Because of the uncontrollable sabotage of our guestbook, user self input is no longer available.
If you'd like to post an entry in the guest book, please e-mail the following info to the webmaster:
Name, e-mail address, City and State and your guestbook entry.
Sorry for the inconvenience,
Inital surgery for the removal of large intestine on January 2004. J-Pouch surgery March 2004. Prenisone was the worst drug I could have been on and many doctors told me this was the only answer for assisting me for years! This surgery was the best thing for me and I have resumed my life! Married 15 years with three small children! I would recommend this for anyone who is ill continually and cannot find relief with medications within a year! Don't go as long as I have for 7 years-500.00 monthly medication. I tried Remicade, Asacol, Prednisone, Antibiotics, Probiotics, I was a patient of trial medications time and time again...the surgery was the only relief for me.
I wish I knew about this very informative site prior to my surgery. A support system is very helpful.
S. Foos <email@example.com>
Tryon, OK USA - Tuesday, February 22, 2005 at 01:11:34 (EST)
hi everyone i had my j pouch in january 2004 following having an illiostomy for 9 months previous to cure colitis. the op went extremely well and my nlife has returned virtually back to normal. I have since met a wonderfull girl and we are getting married this may something i could never imagine happening while i was suffering the pain of colitis. i have noticed alot of people worried about not being able to put on weight easily, i was a bodybuilder weighing 13 1/2 stone before i had surgery and have been able to continue weight training post my j pouch op i now weigh nearly 12 stone and rising. if anyone would like any tips on how to train your pouch to accept lots of food esp favourites like chocolate which i knew i couldn't live without! feel free to email me, i've only just turned 22 so anyone around the same age group who are worried about surgery or who just want advise drop me a line all the best to everyone matt
matt howarth <firstname.lastname@example.org>
london, uk - Monday, February 21, 2005 at 14:24:26 (EST)
Hi there, I had my J pouch fitted in December 2004 and still recovering at present I do have some queries but have not been in contact with anyone else who has had a J Pouch, Im up for a chat and hope anyone can help, Thanks.
London, United Kingdom - Sunday, February 20, 2005 at 13:17:52 (EST)
Hi I've had a j pouch for 5 years now and have developed fistulas. Does this mean I will end up loosing my pouch, and having to have a permanant ileostomy
driver mumu <email@example.com>
jackson, mo USA - Friday, February 18, 2005 at 07:55:09 (EST)
hi this is not the first time on this site i hope someone can help me out i am having a hard time with some things and i do not know what 2 do.i got my jpouch on april 9 2004 i am glad i did but it is hard i do not have knowone 2 talk 2 ok i am going 2 go so if u wont 2 email me back u got my email add. ok have a nice day
paul heim <firstname.lastname@example.org>
montverde, fla USA - Tuesday, February 15, 2005 at 19:00:54 (EST)
I had by colon removed 11/5/04 and my take down on 12/28/04 so Iam still learning what this is all about but feel great. I have enjoyed this web site to learn from. Thank you, Jan
Jan Christopherson <email@example.com>
Boise, ID USA - Tuesday, February 15, 2005 at 17:52:03 (EST)
Hi! I am glad I found a place to go where there are people going through what I am. I am going in for my first surgery on Monday, Feb. 14th - Happy Valentine's Day - and am quite nervous about what to expect with the temporary ileostomy. Actually, the whole idea of surgery scares me A LOT as I have never had one before. Anyone with any advice??
Doreen Schmidt <firstname.lastname@example.org>
- Friday, February 11, 2005 at 23:28:03 (EST)
Hi everyone, I had j-pouch surgery #1 Feb/04 with complications that resolved then surgery #2 in June 04 with complications again. (pelvic abcess' due to long term and high dose steriod use before surgery. It's now Feb/ 05 and I'm finally feeling much better...most days better than before the UC diagnosis. Even though I had horrible complications I do not regret this surgery at all and wish that I had the courage to do it at the onset of diseas instead of battling(and losing) for 6 years prior to surgery...My big question is How do you handle gas pain and does it ever get better or is this something that will have to be dealt with for ever? Someone ....Anyone have some helpful hints?
Mari C.M. <email@example.com>
Toronto, Ont Canada - Monday, February 07, 2005 at 18:57:56 (EST)
My father died of colon cancer 7/8/1970; I was 3 yrs old. My colon examinations began when I was 6 yrs old. In 1981, I was diagnosed with FAP at the age of 15 and underwent a subtotal colectomy. After years of sigmoidoscopies, I made the desicion to have the j-pouch surgery and underwent the procedure on 12/16/2004. I am scheduled to have the "take-down" on 2/10/05. I have had some "rough" moments but I feel having this procedure was a good decision. My uncle and my sister have both had the procedure, in 1983 and 2001, respectively. They are both living very functional lives. I too, look forward to living a very functional life as I continue to adapt. Thank you for such an informative website. I sincerely appreciate it!
Donna Dabney <firstname.lastname@example.org>
Asheville, NC USA - Sunday, February 06, 2005 at 05:57:17 (EST)
I had my colon remove in January 2001 because of FAP. The latest problem I had was the growth of Desmoid Tumor. I got sick the end of September and from the CT scans the desmoid tumors caused a problem with my small bowel and I had the tumor removed along with 12 inches of my small bowell. I am currently on meds to see if they will prevent the Desmoid tumors from growing.
If you have had problems with Desmoid tumors because of FAP please drop me a note.
I however feel very good at the time and can eat anything. I generally have 5 BM a day. I have never taken any meds for BM.
Salt Lake City, Utah USA - Friday, January 28, 2005 at 11:59:29 (EST)
This is a great site. I had my pouch 11-2004; my two ]
biggest concerns are pouch leaking and butt burn. I use
lomotil, fibercon. lactobacillus, calmoseptine--what else can I do? IS it too soon for roasted red peppers and choc
olate cake? Help!!!!!
salt lake city, ut USA - Thursday, January 27, 2005 at 22:15:22 (EST)
this site was the best thing i have found since my surgery oct 2003 i feel at home and the advice is great the chat room is even more great very friendly people keep up this wonderfull site
coventry, ri USA - Wednesday, January 26, 2005 at 17:52:25 (EST)
My Jpouch takedown was on 12/16/04. Has anyone heard of the antispasmodic Levsinex? I've found Calmoseptine OTC and sitz baths are best for the burn and itch. Is it too soon for scar therapy at 5 weeks? What's best for that? I had a wound next to my stoma the whole 3 months of my ilieostomy so the scar is quite large and the stoma barely healed. I'm so relieved not to have that appliance anymore!!
Michele Murphy <email@example.com>
Sparks, NV USA - Saturday, January 22, 2005 at 13:32:23 (EST)
I had my j-pouch surgery at the Cleveland Clinic in 1985. I've lived a very healthy life except for a few problems. I'm looking for others with similar issues! I have not been able to gain weight in many years. I would be happy to gain just 10lbs! Many high calorie foods(icecream, etc.) don't agree with me. Also, I do have bouts of itching,but have controlled that with diet. My doctors at one point thought I had pouchitis, but instead am being treated for IPS(irritable pouch syndrome) and feeling much better. Would love to here form others with these symptoms!
Linda Conway <firstname.lastname@example.org>
Voorheesville, NY USA - Saturday, January 22, 2005 at 07:51:01 (EST)
hi my name is paul i just had my surgery on april 9 2004 and i am having some problems with somethings eating is one of them i am just going 2 get 2 the point i have what thay call dumping and it is haard 2 keep weight on does anyone out ther have the same thing i know my DR told me a lot of people get this i just do not know what 2 do i am 5'10 and i lost a lot of weight i was 180 before now i am 140 i know it is hard 2 keep the weight on lol but this is not fun well i could go on an on but i am going 2 stop so if someone could help me i would like it thank u paul
montverde, fl USA - Tuesday, January 18, 2005 at 20:23:15 (EST)
Hi every one i would like some advise, i am 44yrs of age and suffered with U.C. for 10yrs (silently) i was treated eventually by massive steroid doses with which i lost some of my hair i broke bones and lost my finger nails amongst premature athritis
i was told i was at great risk of cancer and advised to have a colostomy which i did in 1997 have had this for 7yrs and is the best thing i could have i have my life back. recently i was offered a j.pouch and am very worried as to wether to go ahead with it or not as i do not feel ill any more and am very comfortable with the colostomy.Any advise would be appreciated.
linda kebble <email@example.com>
London, England - Monday, January 10, 2005 at 08:53:39 (EST)
I have been having problems with diverticulitis and it has been reccommended that I have my entire colon removed. A colestomy. Has anyone have this done and could you let me know how life was for you after the procedure.
Phyllis S <firstname.lastname@example.org>
Rochester, NY USA - Sunday, January 09, 2005 at 19:37:42 (EST)
Third occurrence of Colon CA. Last of the colon must go. Looking for referenced for the best surgeons on Long Island and NY that do the JPouch. What determines if I'm a candidate for JPouch? Any Service Veterans out there?
Ken George <email@example.com>
Stony Brook , NY USA - Friday, January 07, 2005 at 17:43:29 (EST)
I am having the j-pouch surgery in 2 weeks (Jan 12th). I'm not really nervous about it, actually pretty relieved because of the severity of my UC over the last 4 years and the reputation of the surgeon (Dr. Becker, Boston University Medical Center). I'm tired of taking a thousand pills a day including the steroids for long periods at a time (and including right now). I have a couple of questions - not concerned about frequency in the bathroom as much as control. How long can you hold it after the second surgery and how soon? My job requires frequent travel - how long before you can possibly be in a plane for hours? What about beer drinkers? Any of you out there? I'm 29 and enjoy having a few on the weekends, so I want to know what to expect on that front too. I'd appreciate any help!
Dan Shepherd <firstname.lastname@example.org>
Weymouth, MA USA - Wednesday, December 29, 2004 at 13:37:09 (EST)
This is the posting I originally mae when I found this website....I had a problem with my aol account because my debit card that I barely us except for aol got stolen and my account was deleted. I hve this temporary screen name under a friend's account but in the mean time I have lost my email address for a friend of mine named Denny from Ohio who also has a j pouch. If anyone has his email address could you please send it to me! Thanks I am so happy I found this site!!! I had my j pouch done at the Cleveland Clinic in 1994 and wish I had known there was somewhere I could talk to other J-Pouchers! You know sometimes you sort of feel like a alien or the Six million dollar woman...and you are afraid to tell anyone about your situation because they might think you are different! Well I have found out I am different and think God I am! Because without this surgery I am sure I would have had a miserable existence. Even though the surgeries were very hard to go through and sometimes I wanted to give up I truly think what I have gone through has given me a new outlook on life. When I wake up in the morning I can hear the birds chirp and smell the flowers now. That is something I think that people who have been so close to death and have had the chance to have this amazing surgery can understand! Anyone who would like to email me I would love to hear from you. Take care....Debbie
Sandusky, Oh USA - Friday, December 12, 2003 at 00:25:11 (EST)
Debbie <ITS ME UPPPPemail@example.com>
Richfield, Oh USA - Tuesday, December 28, 2004 at 19:03:51 (EST)
I am so excited about this website! I was at work having a slow day today and decided to look up my old surgeon that did my colectomy and J pouch. Someone else that has posted on this site had the same surgeon and voila, here I am. I was diagnosed with colitis when I was 16, suffered through ineffective treatments for 2 years, including some experimental and somewhat unsafe, and finally had it all taken care of at age 18 via a colectomy and j-pouch. I'm 28 now and, doing ok, but from what I'm reading out here, there are a lot of people having some of the side effects I've had, and they are treating it or seeing a doctor for it. I have not seen anyone for my pouch or anything relating to it since I was about 19. I was told about pouchitis, but haven't had time yet to read up here and find out what that really is. I HAVE noticed a lot of people talking about "5 poops a day" and that is about half what I do. I have learned to live with it, and work with it, I have even been overseas twice and was married in Rome last year! It hasn't slowed me down necessarily, but I look forward to reading more postings on this site when I get home to find out what others are going through and how they are dealing with it. I think all of my failed treatments and a complicated surgery caused me to pretend it never happened. After reading some of the success stories and postings out here, I feel like I might be able to revisit everything I went through and be at peace with it!
Cary, NC USA - Wednesday, December 01, 2004 at 14:21:33 (EST)
I thank you for a wonderful site. You have done very good job. Hope my message it come out OK as we have very bad Internet in Mexico! Actually, we have a very bad many things!
sofort kredit <firstname.lastname@example.org>
de, - Monday, November 29, 2004 at 08:49:59 (EST)
I had my second takedown surgery October 15 at the Cleveland Clinic of Naples Florida. I was out of the hospital in two days and I spent a month in Florida recovering. During this time I was able to resume so many activities that I hadn't been able to do for years. I actually was able to go deep sea fishing once without any difficulties. Unfortunately, I had to endure the surgery twice due to complications, but I would still do it all over again for the quality I can see now. I am still having some perianal discomfort and I think I may be trying to develope pouchitis or something, however, it is not that big of a deal. I have returned home and also work. I am so happy and thankful that I went to the Cleveland Clinic as I probably would not be here any longer if I stayed in Oklhoma and let them try to figure out the problems from the first surgery. I was definitely not a textbook case and probably drove my doctor crazy trying to figure out all the problems I was having. Although I had a multitude of problems and ultimately had to have the first pouch removed and my body cavity cleansed out and then everything reconstructed, I would definitely recommend the surgery for those whose bodies do not respond to conventional medicine. Please feel free to contact me with any questions anyone may have whether you already have had the surgery or if you are considering it.
Jeremy Bisceglia <email@example.com>
Claremore, OK USA - Sunday, November 28, 2004 at 10:25:17 (EST)
Hi everyone. I had j pouch surgery 7/2001 and takedown 9/2001. I have a life and am doing very well. I am having a problem with a stricture where my j pouch connects to my rectal stump. Its causing a significant narrowing and its hard to have a bowel movement without standing up and twisting arouns a bit, then sitting down right when its time to go. My Doctor says I need to be dilated and this narrowing is probably why pouchitis has been coming back. Has anyone here been dilated and/or have similar problems as what Im describing. Please email! My Dr says he'll do it with my finger. I dont know.....sounds painful and even maybe dangerous. This guy is "old school" and scares me in that regard.
Tom Setzer <firstname.lastname@example.org>
New Castle, DE USA - Friday, November 26, 2004 at 00:40:22 (EST)
i signed this guestbook a little while back an had a few emails off people who were encouraged by how well im doing well for the record i do training for boxing six day a week running three times for about 40 minutes and doing over 38 rounds of boxing which is three minute rounds i do a thousand leg chops a day which are like sit ups and four hundred press ups a day this is three months after surgery now im not suggesting everyone should do this but since having my j pouch operation i havnt looked back and am improving everyday i still go to the toilet about eight times a day at the moment but i dont take any tablets for that which would improve it but i never liked taking tablets and thats my choice and im sure it will go down more as the months go by. The reason i bothered writing a follow up was because if i was considering a j pouch operation these are the placers i would go to find out what is like with one and i am being totally honest in the things i say for me i havnt found any drawbacks just my life back im not a believer in frightening people when there is no reason to i see no reason why i wont stay well i trust and pray to god each night i will and i genuinly believe i will and if there are any people out there with uc deciding weather to have this operation then i hope what i can do with mine is helpful . for the record my operation was done at the royal london hospital by professor williams and charlie knowles two of the best sugeons in the world
london, uk - Tuesday, November 23, 2004 at 19:50:01 (EST)
I had a J-Pouch constructed at Rush St. Luke's 14.5 years ago and am fine. No obstuctions or pouchitis. I use to do support groups at Rush and U of C, should any one want to contact me regarding this surgery or Ulcerative Colitis, please feel free to do so and I will respond to offer support.
Sue De Suno <email@example.com>
Chicago Ridge, IL USA - Tuesday, November 16, 2004 at 15:59:02 (EST)
I had a J-Pouch constructed at Rush St. Luke's 14.5 years ago and am fine. No obstuctions or pouchitis. I use to do support groups at Rush and U of C, should any one want to contact me regarding this surgery or Ulcerative Colitis, please feel free to do so and I will repond to offer support.
Sue De Suno <firstname.lastname@example.org>
Chicago Ridge, IL USA - Tuesday, November 16, 2004 at 15:58:20 (EST)
I have had my j pouch for 17 years. I am a text book case. I have never had pouchitis or any other serious problems. One blockage and one very hard to detect tear that was easily repaired in 1998. I now have a 17 yr old son who had UC and had j pouch done in Septemeber.
bonita springs, fl USA - Monday, November 15, 2004 at 19:32:31 (EST)
Just had J-pouch surgery September 24th as a result of ovarian cancer. Trying to find the right things to eat to get closer to normal bowel function.
Karan Landrie <email@example.com>
Atlanta, GA USA - Sunday, November 14, 2004 at 13:11:53 (EST)
Hello I have FAP. I had the first two surgeris for the jpouch in 99 and had also the whipple in 2000. interested in talking to anyone that needs it but also very intersted in talking to anyone with fap that also had a whipple.
Nj USA - Saturday, November 13, 2004 at 16:30:13 (EST)
3 days after final surgery with j-pouch, i was going to the bathroom without any problems except sore butt. For the first little while you should put cream such as zinc or something thick and use flushable wipes that toddlers use everytime you have a movement. Very important to keep area clean cause once irritation sets in its harder to heal. I'm 34 and had uc. If anyone has any questions don't hesitate to email. Laurie
Canada - Tuesday, November 09, 2004 at 10:18:39 (EST)
I have had my j-pouch a year and a half. I did not do well with ostomies(leakage, dehydration, skin breakdown) and do not want to lose my pouch. Actually, the pouch is healthy, but the perianal skin is not. Can anyone give advice on how to control skin breakdown from leakage? I can't work, travel is difficult, and I have to limit activities to those near restrooms. I have superficial tears around the anus that get irritated. Barriers only exaccerbate the problem. My diet is so limited it is boring. Help!
Auburn, WA USA - Thursday, November 04, 2004 at 14:54:57 (EST)
I had the pouch surgery (coloplasty) one and l/2 years ago.
At this point I am lucky. I don't go to the bathroom many times per day - like many others. To decrease the frequency I use an enema every 2-3 days - and as a result only have bowel movements then. Right after surgery I had a hard time with the 20 bowel movements a day, the acid burn, and a restrictive diet. Things do improve everyone. It takes time. Right now I have a fistula (infection in a small tunnel at the point where my pouch was sewn). But I think that it will be a small surgery to clear it up and I will be back to normal. I wish all well.
alpharetta, ga USA - Friday, October 29, 2004 at 15:56:19 (EDT)
I had colitis for nearly three years and went through all the drugs including steroids which i hated i also got multiple small bloodclots on my lungs because of the disease and aneamia anyway i had the surgery in a two parts from march the third and havnt looked back the differance between colitis and having a pouch is like a small hole n the ground and the grand canyon one is liveble and the other is soul desroying and rules your life 24 seven and as for the itching i hear so much about if you clean yourself after everytime you go to the toilet it gets rid of all the stomache acid juices what causes the itching and you wont get it i think some people are ignorant worrying people who are thinking about this operation due to there lack of higene just get warm water and wash yourself its that simple. i go to the toilet about 7-9 times at the moment but it is getting better and its only been two months so im not to worried im just grateful to god for getting a second chance im also going back in the sport i love so much boxing so ill keep you posted how that goes thanks i would recommend the j pouch to anyone with colitis because you do get your life back so keep your heads up if your fighting uc because the good times are round the corner.
london, uk uk - Tuesday, October 26, 2004 at 10:34:01 (EDT)
I had my surgery in 1993 at age 15.Just found the site now. It's nice to see that I'm not alone :)
Mankato, MN USA - Sunday, October 24, 2004 at 22:56:13 (EDT)
I was diagnosed with ulcer col at age 17. I battled with flare ups off and on for over 20 years. At age 43 I had a complete colectomy and J pouch. That was 5 years ago and I'm still learning things that help me. Caffine is a definate problem for me. Also spicy foods. I had a lot of pouchitis flare ups until I started taking probiotic acidophulus (over the counter). I take four a day and have almost no flare ups of pouchitis. Stess, caffine, high fiber foods all cause me problems, but I'm learning to avoid those things. Life is good !
Peoria, IL USA - Thursday, October 21, 2004 at 13:51:46 (EDT)
Hi I am a 41 year old woman who just recently had a J-pouch. It was tough at first dealing with the ileostomy bag and having to change it every few days and also with dehydration. I had to go back to the hospital a couple of times before the j-pouch was even connected. I would advice that you drink a lot and keep an eye on your sodium because if your sodium is low you can't absorb what you drink that was my problem. I've had my j-pouch now for 1 month and 8 days and I go about 7-10 times a day sometimes less depends on what I eat. I would recommend the j-pouch to anyone who is suffering from UC it is not fun and rules your life. Feel free to email if you have questions would love to give more info.
Rainier, WA USA - Wednesday, October 20, 2004 at 19:51:16 (EDT)
So nice to finally find this site. I wish I had seen it before I had my surgery. I Had my take down surgery a year ago this week. It has been an interesting year adjusting to the jpouch and what I can and cannot eat. I still havent figured all of it yet. It is great to find a place like this where people can relate experiences. thank you,
Patty Rogers <firstname.lastname@example.org>
Cumming, GA USA - Sunday, October 17, 2004 at 21:09:21 (EDT)
Thank you so much for this site. My daughter is having "J Pouch" surgery this weekend and this site has provided me and my family with much needed information.
Martha Gleason <email@example.com>
Ponte Vedra Beach, Fl USA - Thursday, October 07, 2004 at 21:05:08 (EDT)
This is a follow up to a May 2004 posting. I am currently in Florida for a second takedown surgery. I finally decided to go to the experts at the Cleveland Clinic of Naples Florida to see what the problems were. My great doctor found a twist in the pouch and concluded that the twist and some adhesions were causing my problems. Unfortunately, the only way to determine the actual problem was to open me back up and take a look. Xrays and CT scans and all the wonderful technology could not determine the problem 100% due to scar tissue and the likes. I was told there would be three results. First, he would find the twisted pouch was fixable, untwist it and sew me back up. Second, he would find an unfixable twisted pouch, remove it and reconstruct another with a second loop ileostomy. Lastly, he would find an unusable twisted pouch, remove it, not have enough intestine for a reconstruct and I would have a permanent ileostomy. All three of which were much better than the current situation. I was informed of all the complications and problems that could come of this procedure. My family and I decided that we really had no choice but to leave it up to my doctor and went for the procedure. My doctor found that I had a pouch that was twisted 5 degrees upon itself with multiple adhesions (probably due to a post op infection). It was not salvageable and when he removed it, he also found multiple abscesses on the backside that were still full of infection (even though I had been on mutiple antibiotics including IV doses pretty much continuously the past eight months. I did,however, have enough small intestine for him to reconstruct another j pouch and loop ileostomy. It really sucked bad for the first two months because the incision lines had to be opened up and allowed to heal from the inside out to prevent any infections. I am currently back in Florida for the second takedown next week (Oct 15, 2004) and am happy to say I am doing so much better than the previous surgery. I lost about fifty pounds after the first surgery due to infection. The nine months preceding the surgery and prior to the second surgery I only gained about four pounds back. I have already gained about 15 pounds back in the last three months since the second surgery and feel great. I am anxiously awaiting the takedown to be rid of the 'bag' and can hardly wait to see how things are going to be. I still have a long road ahead of me, and may still end up with a permanent ileostomy, however, thanks to the great doctor(s) at the Cleveland Clinic, I have a chance. I'll post again after the takedown.
Jeremy Bisceglia <firstname.lastname@example.org>
Claremore, OK USA - Thursday, October 07, 2004 at 12:00:15 (EDT)
I have been informed by my Gastroenterologist that he is recommending surgery for my Ulcerative Colitis condition. Drug therapy has not helped me achieve remission. I don't feel too bad right now even though the disease is still active. Most ills I am feeling right now is from the side effects of the drugs I am on. I have about 6 bowel movements per day and a usually urgent and somewhat strained and painful. I do have a little blood and mucous every now and then. I've never had surgery before and it is a very frightening thought. What I am looking for is for someone to tell me what to expect from start to finish with the J-pouch surgery. How long I will be "out of commission" from work. And what sort of scarring will I have (location, size, and number of).
Bruce Wilson <email@example.com>
Nepean , ON Canada - Sunday, October 03, 2004 at 12:42:01 (EDT)
Respect! I was surfing along and came across your website. I really enjoyed it. Thanks! This site is very informative. I hope to see more info for. Wishing you all the best!
de, - Thursday, September 30, 2004 at 12:28:02 (EDT)
I have been living with a J-Pouch for 15 years now, and the experience has mostly been a positive one, but definitely a learning experience. I have recently written down my experiences on my website at http://www.northcrossing.com/Colitis.html , and I keep adding to it frequently. My hope and desire is to help others with a similar condition, and share my experiences. Good luck. Juergen
Juergen Amft <firstname.lastname@example.org>
Calgary, AB CANADA - Thursday, September 30, 2004 at 07:19:45 (EDT)
Hi I recently had my take down surgery on August 23, 2004. Im new to the J Pouch and welcome and advise or support I can get. I feel great except for the frequent number of times I still go the the bathroom. But its way early yet and I will hopefully get that number reduced. I live in Jacksonville, Fl and would like to hear from anyone in my area who needs to talk or has any advise for the newbie. Thanks for listening everyone and I wish everyone great happiness and success with your lives and your Pouch. Take Care and contact me if you want to share stories.
Lisa Walker <Princessljw@hotmail.com>
jacksonville, Fl USA - Wednesday, September 29, 2004 at 19:08:34 (EDT)
Developed UC at 15. Diagnosed when I was 16. Had to be hospitalized with only 5.9 of my hemoglobin left, also weighed only 104. When I was 18 the doctor I was seeing told me she would never consider surgery, because I only had a moderate case of Colitis. So I pretty much forgot about it. Although in the last 12 years the longest I have ever been in remission is 8 months. So I pretty much had moderate but recurrent UC. I have been on Asulfadine, Prednisone (who hasn't been), Asacol, Imuran, and Purinethol. Even though I was usually in the middle of a flare up I was able to live my life (kinda). I was pregnant in 2003 and gave birth to my son on 10-05-03 however I had a flare up the entire time I was pregnant and after a C-section had to have a blood transfusion because my hemoglobin was 6.0. After that I was constantly sick and was hospitalized in January 2004, twice in April 2004, and then againin September 2004. During this last one I finally looked at the doctor and said NO MORE I want to talk to a surgeon. So on September 5th I had my ileostomy surgery and my J-pouch built. So my takedown should be sometime in November or December. I am thankful to be right on the verge of being healthy for good, NO MORE ULCERATIVE COLITIS!!!
Marietta, GA USA - Wednesday, September 29, 2004 at 17:05:23 (EDT)
My name is Juan, and I was diagnoised with U Coalitis in Oct of 2003. I was taking all the medications that were given to me and nothing had worked not even the steriods (Prednisone). I would go to the bathroom about fifteen times a day and would bleed alot,and had even lost eighty pound in this horrible ordeal, it was rough at work and at home. Just this month my wife had to admit me to the hospital and my Colon was removed and now I have a pouch. I felt that my doctors had given up on me to soon, but they insisted that this was necessary, and they would create a J-Pouch and connect me back together by next year, since I had lost blood and was very weak before being admitted to the hospital. Physically I'm doing ok, but mentally I'm a wreck. I need some words of encouragment.
Juan Sonora <email@example.com>
San Antonio, TX USA - Tuesday, September 28, 2004 at 14:13:44 (EDT)
This is a follow up to my posting on April 27. I have been on VSL for 5 months. I missed a few days last week and now today I have pouchitis. I dont know if missing those few days did it, but I can honestly say my 5 month run of being pouchitis-free is done. We'll see when I get through this and try it again. I never did more than 1 packet a day. Some of the tests were with 2-4 packets a day so my dosage might be too low.
New Castle, DE USA - Thursday, September 23, 2004 at 19:11:44 (EDT)
Hi, I'm 17 and just had a total colectomy w/ temp ileostomy Aug 19 , I was diagnosed with UC Sep 03 and had a tough time with it I am waiting to schedule my 2nd surgery which im hoping will be around November or before! I'm just very frustrated with the bag and also am a senior in high school... I'm having a hard time with everything! If anyone has gone through similar situation please email me
PA USA - Wednesday, September 22, 2004 at 15:03:33 (EDT)
Hi! Recently had total colectomy due to discovery of colon cancer. Had Uc for 29 years(nver that sick) I have temp illeostomy and will have 2nd op in Nov when J-pouch will be constructed and takedown of illeostomy..really like a one step op. Anyone out there have simlilar story I'd like to hear from..I am concerned about Jpuch function getting back to work etc.
Longmeadow, Ma USA - Saturday, September 18, 2004 at 22:49:43 (EDT)
Hello to all, I am a 50 year old middle school teacher and I was thrilled when I found this site. I had my j pouch surgery back in May and wasn't scheduled to have the take down until December. However, my small bowel became obstructed and that required surgery and my surgeon and I decided that we'd go ahead and do the take down at the same time, a two-for-one offer I just couldn't refuse. I am really happy with the surgery so far, I am feeling strong and am back to work full time already. My major problem is terrible itching and burning that I can't seem to get under control. I have tried antifungal ointments, diaper rash creams, etc. but so far haven't been able to control it. Any advice from fellow pouchers would be welcome! Thanks
Diane Hughes <firstname.lastname@example.org>
Springfield, OR USA - Saturday, September 18, 2004 at 12:42:06 (EDT)
I am 22 years old and this year I will have had my j-pouch for 12 years. I was one of the first kids to get it in Houston and I was blessed to have found my miracle surgeon, Dr. Robert Bloss. He was phenomenal with my operation and his bedside manner was great as well. Unfortuantely, at that time I nor the doctors had much info about what my quality of life would be like in my future. I am still a bit in the dark about what is normal as I progress with this j-pouch. I was always a bit disheartened by the fact that I knew no one who had been through what I had and especially in my age group. I think this site is wonderful and I nearly teared up when I found it because it helped me realize that I'm not alone. I lead an active, normal life now and am about to graduate college in May 2005 so I feel blessed to be alive. I was on my deathbed when the doctors finally found out what was causing my symptoms and by that time the UC had completely destroyed my colon. Surgery saved my life! I just want to encourage others out there who have just had it or are going to have it and let them know that you will regain your life. The only thing you have to watch for his certain foods and pouchitis which is treated easily with anitibiotics. I would love to hear from anyone who wants to talk, ask me questions, etc.
All my love,
Tiffany Matthews <email@example.com>
Houston, TX USA - Friday, September 17, 2004 at 01:58:42 (EDT)
First of all, I think this site is great! I wish I would have found it years ago. I am a 32 year old mother of a 6 year old girl. I was diagnosed with UC in late 1986. In March of 1998, I was (6 months pregnant and my UC was getting out of control) I was admitted to the hospital. I was there for 13 days before they had to deliver my 3 pound daughter to the stress on her due the the high level of steroids I was taking. She was perfect and now they could delay with me. After 3 months of recovery, I went to the Mayo Clinic in Rochester where I was informed about the surgery (as I had not other options). I had my reversal 3 months later. I am happy to say that I am on no medication and have only had pouchitis once (early after my surgery) and it has been over six years. I have learned which foods effect me. Once thing I have learned is DON'T EAT LATE....that only means a restless night. I am grateful for the surgery and living life to the fullest.
I do have a question for anyone...I have found that my system is loud...it sounds like water is running (sounds funny but it is really fun to deal with when you are in a meeting for work; I usually just laugh it off). Does anyone else have this problem and/or know what to eat to he absorb the sound? Thanks again for any feedback and I would love to talk with anyone who has had the surgery.
Duluth, MN USA - Wednesday, September 15, 2004 at 23:08:34 (EDT)
Hi, i think i submitted an entry a while ago but my e-mail has since changed so i thought i would submit another one. I am a 23 year old female who was diagnosed with familial poliposis in December 2002 and i had my j-pouch done in January of 2003. i did have a bit of a hard time - an unplanned second surgery, systemic fungal infection, and small bowel obstructions- and was in the hospital about a month and a half. i am doing great now, though! i consider the quality of my life to be extremely good. i am a registered nurse and work on the floor where i stayed as a patient, with all the same doctors and nurses who took care of me. it's been quite a neat experience. i'm up for any questions. take care =)
Elizabeth Landry <firstname.lastname@example.org>
Birmingham, AL USA - Friday, September 10, 2004 at 22:25:57 (EDT)
Hello- My name is Kate and I am 24. I had the first of the two step surgery on Aug 18. I am still pretty weak, but I was extremely sick when the surgery was performed. I had only had colitis for about a month and as it turned out I was living with a dead colon for about two days before the surgery. Needless to say I have lost a lot of weight and am tapering prednisone, down to 7 mg a day. Luckily I wasn't on it for very long but it still has made me miserable. I am really having a hard time with the bag and am nervous that the takedown won't work out as well as it does for some people. Last week, I had to go back to the hospital because I had a fever of 104! It was due to an infection in the pouch, the docs just drained it and I was better immediately but this incidence has just increased my fear. They say it shouldn't affect/effect? the success of my pouch but I am skeptical of doctors anyway. Advice on any of this is so appreciated. Thanks.
San Francisco, CA USA - Friday, September 10, 2004 at 16:57:34 (EDT)
My husband had the first step of the j-pouch surgery on July 29 and is scheduled to have the take-down on October 19th. He is doing really well, mainly just his stomach muscles are really sore. The only real problem he has had is the emotional part of dealing with the ileostomy. He has also had fluid that develops in the j-pouch that he passes rectally. It has slowed down a lot, but there is some drainage daily. It is water like with some mucous and the doctor says that there is nothing to worry about. He is nervous about the takedown because he doesn't want it to fail. He really hates the ileostomy and doesn't want to have to have one permanently. Anyways, I was wondering what the best probiotic is to help prevent pouchitis, and what should he use to help with this butt burn we have heard about. Any suggestions would be appreciated
Redmond, OR USA - Thursday, September 09, 2004 at 07:24:09 (EDT)
Hi, i'm 28 years old and just had j-pouch surgery this past may and the "take down" a month ago. so far i'm doing really good!
i think this page is just great, i used it a lot(and still do) to get information, or just to hear what others experienced.
i get the feeling that some people mess around with this guestbook and thats sad!!!! many people hope to get information from this site, so its sad when people make a joke out of it.
thanks for this site and best wishes to all!!
Conny Carleton <email@example.com>
portland, or USA - Wednesday, September 08, 2004 at 12:59:09 (EDT)
Background: I'm a 32-year-old male who had Ileoanal (J-Pouch) surgery seven years ago for Ulcerative Colitis (UC). In a nutshell (for those readers not familiar), my entire large intestine and most of my rectum were removed. Subsequently, I now have an internal "J-Pouch" constructed from small intestine tissue which acts as a rectum. I function the same as the average person, except that my plumbing is shorter (I do not have any external appliances, i.e., ileostomy bag). The surgery is a cure (although very drastic) for UC. My health is total fine, now, and in fact, I have been working out for a few years and am in the best shape and health I've ever been in my life. Recently, however (within the past eight months), I've had three intestinal obstructions, due to the early stages (called, angulations) of internal post-surgical scar tissue (adhesions) formation in my small intestine. Fortunately, all three times, the blockages cleared up on their own.
Question: Can anyone out there recommend or at least point me in the right direction as to how I can find a diet that agrees BOTH with my altered (and obstruction-prone) digestive system AND my goals for a results-drive exercise program? Essentially, my digestive system cannot tolerate high-fiber, too many uncooked vegetables, or nuts (many of the items needed to compliment an effective exercise program). As long as it's cooked and not extremely high in fiber, my system can handle it (mainly cooked green beans or zucchini squash). I can eat salads, but only small portions, as I run the risk of another intestinal obstruction if I consume larger portions of raw, uncooked, high-fiber vegetables or whole-grain breads or even oatmeal/bran. I can eat meats, eggs, pastas/rice and non-fiberous raw fruits just fine. White breads are fine for my system; however, I try to limit my intake so that I don't lose my workout results with too many carbs. I also supplement my meals with liquid supplements (i.e., protein shakes, twice daily) to make up for what I cannot consume otherwise. I previously tried a high-calorie diet (i.e., 3,000 calories daily); however, I developed an intestinal obstruction within a month (my first). Now, I eat smaller meals, more frequently during the day, averaging between 1,800 to about 2,000/2,200 calories daily.
If anyone out there as any suggestions regarding a balance between a diet that would work for me and a good weight-training program, I would be more than happy to receive your feedback.
Many thanks and best wishes to all.
Murat Kavlak <firstname.lastname@example.org>
Alexandria, VA USA - Tuesday, September 07, 2004 at 14:16:25 (EDT)
Hi, i did come her almost a year i got introduced to this group by one of my friend from bombay Atul. My case was so critical. but then i thought i should try out homeopathy and since then touchwood by gods grace i have an any problem..keeping my fingers crossed. rik
Ishwar Kumar <email@example.com>
Mumbai, MH India - Saturday, August 28, 2004 at 00:36:46 (EDT)
I am looking for a dr (surgeon) in the Chicago area. I live in the southwest suburbs of Chicago. I had my surgery in 1991 and takedown in 1992 (total colectomoy w/ J-pouch). I had the surgery done in Atlanta (Emory University Hospital) while I lived there. I have been back in Chicago area about 8 yrs. without dr. Have seen a gastroenterologist but didn't like him. He wanted to do a colonoscopy on me and didn't understand my surgery fully.
I would feel better just having some recommendations in case I need them. Thank you. Susan (firstname.lastname@example.org)
Susan Reilly <email@example.com>
Oak Lawn, IL USA - Friday, August 27, 2004 at 09:30:03 (EDT)
I can relate to all! I have had my J-Pouch since Jan. 2003. The whole process was no walk in the park. I made it through all three surguries - and a fourth one thrown in due to complications. I continue to see my doctors on a 3-4 month recall. Life in general is wonderful. Thankful to be alive. Thanks for this site. t
Marcella Kelly <firstname.lastname@example.org>
Colonial Heights, VA USA - Wednesday, August 25, 2004 at 20:50:00 (EDT)
I just decided to check this out...I'v never looked up this topic and I have had a j-pouch since 1986
Lil Flodin <email@example.com>
Prosser, wa USA - Wednesday, August 25, 2004 at 17:51:45 (EDT)
I developed UC when I was 15 years old. From 15 to 19 I had only been in remission for one month. Due to the extensive blood loss, I became very anemic. I was on every medicine you could imagine and nothing worked. I started becoming hospitalized often. The decision to have the surgeries was the only one that I had, I had come close to death already due to the disease. The first step of the surgery did not go well. My small bowl was nicked and I developed blood poisoning, along with pnuemonia and pluresy. I came the very close to dying, and had to stay in the IUC for 11 days....an emergency surgery was done to correct the hole in my small intestine and the incision was left open to prevent further infection. I actually went home for 3 weeks like that, till I had a mini operation to close it. I had 5 surgeries in five months (3/03-8/03) and I am asked for all the pain and struggle was it worth it. I would say absolutely! Its like being given your life back, it belongs to you and not the disease. Keep your head up everyone! It will turn out for the best!
Mina Andreas <firstname.lastname@example.org>
Columbus, OH USA - Tuesday, August 24, 2004 at 03:30:05 (EDT)
My last surgery will have been 4 years ago come this week! August 27th was the day.
I had suffered for 2 years being TERRIBLY sick, almost died, had EVERY SINGLE complication you can imagine, pyro derma, morphine addiction...you name it! Well, I'm here to tell you since that last surgery I have progressed extremely well. I have good and bad days, but the good start to out number the bad, and pretty soon they were all good, and the bad are few and far between. Do I get the "runs" you bet. Just don't eat for a few hours and/or take some Pepto. Do I have some painful roids, and even a fistula...yep, just use some prep H and some calmoseptine watch what I eat, and withing a couple days, I'm good.
I also run/walk 3-5 and even sometimes 10 miles a day. I exersise, take my vitamins and I am a vegetarian! That meat is what is rotting in your pouches and causing you so many troubles!
I'm not vegan, I do eat some cheese and eggs once in a while and I don't retrict the things I eat made with them, (pizza is my favorite food!) but I don't make dairy and eggs a habit either. I eat LOTS of fruits and veggies, and yes, they will pass through fast, but that's a GOOD thing.
Think about it, why would you want anything laying around in your small intestines, or pouch for any length of time...
By the way, I'll be 41 in Sept, I had been sick since the age of about 30 with IBD, then it progressed into full blown UC, with no going into remission after about 7 weeks in the hospital, all the steroids and bulls**t (1 wk, 1 wk, then 2 wks then a 3 wk stay all over the course of about 6-7 months) Finally I gave in and had the surgery in January of 2000, the final surgery ( I had to have 3 because of a complication) was 8/27/2000, and These days, I'm feeling pretty wonderful...to see me you would never know I was so sick and people are always in awe when I tell them what I went through.
Try and stay positive. How you handle it emotionally and mentally will make all the difference.
By the By...I was operated on in Philadelphia at Presbyterian Hospital...Dr Nusbaum, who is featured on this site actually did my surgery!
Deb Troutman <email@example.com>
Mountville , PA USA - Saturday, August 21, 2004 at 12:54:53 (EDT)
Hi everyone, I just had my jpouch surgery at the end of April 04 and my ileostomy close in June 04. For those of you with questions about the pain or possible complications, both are overwhelming. I'm not going to lie, if I had to do it again, I wouldn't!!! It was severe! The pain is indescribable. The complications that can arise are debilitating. I had an NG tube twice. (My stomach pumped) It's a long road to recovery, but I am happy to say I'm back to working out and doing almost everything that I did before. Eating is far different though. Don't expect your stomach to feel anything like it did before sugery (if you have a total colectomy). And stay close to a bathroom! If any of you reside in FL, please go to The Cleveland Clinic in Weston. They are superior! Drs' Wexner and Nogueras! Good luck, be strong and please feel free to contact me. I had colorectal cancer and I'm 29. Bye.......
Kimberly Giavarini <firstname.lastname@example.org>
Palm Bay, FL USA - Friday, August 20, 2004 at 21:36:54 (EDT)
I have been searching for just such a site since my second surgery July 6. Things are progressing with the exception of major irritation and frequent trips to the bathroom both day and night. I am hoping to find relief for the irritation.I have tried calmoseptine and a couple of other things. I really haven't been able to advance my diet much. I try but my body seems to prefer toast. I think the j-pouch is much better than the colostomy bag.Thanks to all of you for your support
Englewood, FL USA - Wednesday, August 18, 2004 at 19:05:21 (EDT)
Thanks for this informative site! UC for 18 years since fall of 1986, looking for surgery options due to colonsocopy results (low grade displasia) ... still contemplating Jpouch or ileostomy and gotta make up my mind soon. Not quite sure which, considering the thing I hated most about UC was the urgency and frequency of visiting Mr. Throne. And haven't had a relapse in over 10 years. But we'll see. .....
Tonawanda, NY USA - Monday, August 16, 2004 at 23:12:33 (EDT)
I have had a j/loop since 1984 and took no medication at all until a little over a year ago when I started taking imodium. After about 6 monthes of taking the generic I started having my first pain since the surgery. I was quite intense right in the pouch area. I had been taking about 4-5 2mg tablets a day. Since I never had a problem before I guessed it could be from the imodium. I have no idea if this is a correct correlation but when I stopped the imodium and stopped eating for a brief time it cleared up. Since then I have had 2 other occassions with similiar pain when I had to be hospitalized. I must restate that I'm not sure there is a correlation but since then I take them sparingly up to 2 2mg pills p/d. I'm still testing and observing myself to see if this will work to keep me out of the hospital. Of course it could all be coincidental that my first pain/hospital problems started at the same time (6 monthes after taking imodium for first time).
Either way,personally when I feel early symptoms of bowel trouble I quit the imodium and stop eating for almost a couple days. This has worked for me and I hope this me and I hope this may be helpful to someone else.
Tom Hoye <email@example.com>
Wheaton, Il USA - Monday, August 09, 2004 at 16:07:05 (EDT)
I suffer with chronic pouchitis. If you have this problem too, I would love to hear from you about what you are doing that has helped and what not to do. I had my reversal 3/03 and have been on Cipro pretty much since then. I also have issues with anal stenosis...
Clemson, SC USA - Thursday, August 05, 2004 at 15:06:01 (EDT)
Hi, I would appreciate a response to my question. Last March, my husband was sick and was diagnosed with uc, he was only sick for 2 weeks, and this was his first bout with it. He was in the hospital for one month on steroids, and that did not put him into remission. He got so sick it was scary, he lost over 50lbs, in one month. He had his colon out and had to wear the bag, he hated the bag, he would never change it, i had to change it for him. We have two children 3 and 4, who don't understand what is going on. Our lives, have been turned upside down. Because of this disease, he could not go to work for months, we went through all of our savings, and with his type of job, no work, no money. This happened in March of 2004, he has since had the reversal, and he is in the bathroom 18 to 20 times per day. he takes 12 immodium a day and eats 12 fiber crackers a day, and is still going 18-20 times per day. It is now the end of July, and he is trying to work again, he is just so sick all of the time, it hurts so much to see. I miss my husband, i lost him when he got this awful disease. Please, does someone have some advise on what to take, in order for him to have less bowel movements. Any advise on anything to make him feel better, will help. Thank you
tina susi <firstname.lastname@example.org>
taunton, ma USA - Saturday, July 24, 2004 at 15:49:56 (EDT)
having lived with the agonising pain and frequent urgent trips to the toilet diverticularitis is making my life a misery doctors can.t help have tried lots of herbal remedies nothing helps please please can anyone help me ??/
helen skinner <email@example.com>
glasgow, united kingdom - Wednesday, July 21, 2004 at 06:02:55 (EDT)
Hi, I came to this sight origianally in late 2001 early 2002 when I had my j-pouch surgery. It sure beat the UC that I had lived with for 27 years!.
I just came out of a 3 week hospital stay for adhesions that blocked off my pouch. This was the most horrible time of my life. But I still don't regret the surgery!
Connie McCollum <firstname.lastname@example.org>
Logansport, In USA - Saturday, July 17, 2004 at 12:07:58 (EDT)
I first had ulcerative colitis at age 12. It was in remission with drug therapy until I reached 16 and my bowel had to be removed(except for my rectum). I lived with an ostomy until age 21 and then had the J pouch performed in one precedure. I found the surgery very painful but well worth it! I have had the pouch for 16 years now and it is a much better choice than having an ostomy which I had for 5 years.
Bradford, Ont. Canada - Wednesday, July 14, 2004 at 23:28:52 (EDT)
I suffered with UC for about 3 years and got really really sick really really fast in Feb 04. The 1st and only time I spent in the hospital was a month and went for the J pouch on Mar 1. The day after surgery I woke up and felt wonderful for the first time in years. I am now going for 'the take down' on July 26. I'll miss not having to run to the bathroom, but I hope everything goes ok
Rhonda Croal <email@example.com>
Weyburn, Sk Canada - Friday, July 09, 2004 at 15:01:17 (EDT)
I just graduated from high school. In January this year of this year I was diognosed with U.C. I really didn't understand what it was. All I knew for the moment was that there was blood in my stool and a lot of pain. The more I worried about it the worse it got. My doctor thought it was directly related to my bad nerves. I am now preparing to go to college, but I still have frequent flare ups. I don't want this problem to stop me being successful just because I have pain. I am currently taking Asacol, Prednisone, and Azathioprine for my U.C. I really don't understand much about it, so please if you're in the same situation help me out with some information.
Jazmine Barnes <SupaStarr05@aol.com>
Rocky Mount, NC USA - Thursday, July 08, 2004 at 11:38:59 (EDT)
Dec 1999 i came down with a case of the flue...it turned into pneumonia.After many visits to the doctor & still feeling lousy,i asked my husband to take me to the hospital,saturday jan 10,2000.That's the last thing i remember until i woke up 5 weeks later.The nurse bending over me told me i had been in a coma/had an ileostomy??had a fistula??had a tracheotomy,that's why i couldn't talk and all of these surgeries had been preformed because i had contracted something called closidrium difficile.Oh,i'd have to re-learn how to walk/brush my teeth ect ect because to keep me from coughing they had injected me with something to paralyze me..which had caused a lot of muscle and nerve disintegration.What the heck!!!
9 weeks after that i was discharged from the hospital on a walker.The balance of that year was a total nightmare,not only trying to get my strenghth back but learning about my stoma,things i couldn't eat..accidents with the pouch ect ect.I really did not want to return to that hospital to have my take down operation.But 15 months later i returned and had it done-came down with pneumonia again,infection on the operation site..more nightmares.
But i'm glad i got it done,i really did not want to live with the ileostomy for life..my depression lifted after the operation.I just wish i had known about all these great sites,found them after the take down operation.I would have learned about my j-pouch/why i gained 50 lbs and why my hair almost all fell out.I was very low on B12 so now i get shots every month for that..also that when i take vitamine pills..check the toilet after i go...seems they were comeing out whole..so now i crush them and take with orange juice.So many new things to learn.
The most important thing i learned after take down surgery...Do Not Fart unless absolutely sure that it is a fart..sorry about the graphic explaination..couldn't resist.And i have had a few accidents..Oh well,I'm alive and almost back to pre-pneumonia incident..and happy
Thanks for the great site.
London, on canada - Wednesday, July 07, 2004 at 10:52:17 (EDT)
During April 2003, I had a sudden acute attack of Inflammatory Bowel Disease. I had only had one minor flare up in my life in December 2001, this was when my diagnosis was Ulcerative Colitis. Two weeks later I was fine. From April 2003 to June 2003 I was in the hospital fighting to get well and save my colon. Never had I had experiences of running to the bathroom or severe abdominal pain until my hospital stay. This made it hard to be willing to lose my colon. I was physically fit and had always been in good health until I entered the hospital in April. The high doses of prednisone seemed not to work, so the doctors tried three infusions of Remicade. I finally got out of the hospital June 14. Went home and thought I was going to be ok. But then on July 4th my colon perforated and the colon was removed. Waking up with an Illeostomy bag was a shock. My thoughts were why did this come all at once? I had been feeling fine and in good physical condition. Soon I could no longet ask why and accepted my condition. I found a fantastic colon rectal surgeon at the Mayo Clinic in Jacksonville, FL. My second surgery was January 28, 2004 and my take down surgery was April 9 allowing me to have a J-Pouch. I realize my life will never be as it was, but much better than what could of been. My J-Pouch is functioning great.
This web site has been very beneficial to me over this past year. Through prayers, faith, and perseverence I will be fine. My prayers are with all that suffer with IBD and my fellow J-Pouchers.
Winter Park, FL USA - Wednesday, July 07, 2004 at 03:38:22 (EDT)
I'm a 46 year old mom of two, my husband has chronic progressive Multiple Sclerosis and I've just been diagnosed with F.A.P.. My colon and rectum will be removed in the middle of July, I'll be sporting a temporary bag for six weeks and then it's back to Sloan Kettering,N.Y.C. for the tweaking of the "J-Pouch". To Say I'm frightened is an understatement! I know I have no choice, the polyps cover my entire colon and rectum and don't look good. My stomach has polyps as well but that's a problem for another day. My son, 20, is experiencing bleeding from the rectum as well so he will soon be examined for this too. I'm a strong person but I must admit this is hard. I'm not accustomed to asking for help, however, I could use some now. What foods do I avoid? How often are the bowel movements on average? How is it possible to sleep with the dreaded bag? After the "J-Pouch" can I continue with an exercise program including sit-ups? Will Sit ups help or is everyone laughing thinking that's the last thing I should be thinking of? I hit the ground running so I'm thinking of how to heal fast. I have everyone looking to me for answers. I'm the sole bread winner here so my down time needs to be trimmed to the quick. I should mention I'm 4'11 about 109lbs. I put on a bit of weight before I started dropping lbs.. Is it expected I'll be losing more? Is there anyone who can answer the average life expectancy for someone with F.A.P.? Besides taking Celebrex or Sulindac are there any other medications for the treatment of this hereditary disease? I'm weak, tired and scared if anyone has any advice I could use it now! Good health to all, Thank You.
Elizabeth De Luca <firstname.lastname@example.org>
Riverhead, N.Y. USA - Sunday, July 04, 2004 at 20:55:54 (EDT)
I've been banned from this board simply because I talked about how unhappy I was living with my J Pouch and wish I never decided to choose the surgery. That's the only reason they banned me here. So if anybody thinks this board will be of any good to them think again. The truth is this board is worthless and of no real help to anybody.
J.Pouch.org is worthless
USA - Saturday, July 03, 2004 at 12:01:35 (EDT)
I would like to know how I can go about collecting stories on people with j-pouches in my local area, being the State of Victoria in Australia. I am asking anyone out there as I am not 100% sure how to go about collecting this information. I have contacted the hospital that I'm a patient at and am waiting for a response. But as most would know, doctors are always busy and are short on time. Any suggestions or referrals on people who may be able to assist would be greatly appreciated.
I myself am a j-pouch recipient and I am trying to get together people who have had the same surgery so I can collect their stories and find out how they manage their j-pouch. Most of all I want to do this so I don't feel so alone and to make this information available to people in Australia whom have had the surgery or are faced with going through with surgery. I know there is this website, but I'd love to meet more people with a j-pouch, so if anyone has any suggestions please forward them onto my email address: email@example.com.
My operations were performed in 1998, when I was 20 years old and I have been living with a J-pouch coming up to six years now. It has been going well, however I have had incidences with Pouchitis and many other niggly things that I've had to deal with along the way, in other words, nothing has been the same since. As, I can see with others on this site, I was once very fit and very active. I only had symptoms for a little less than 6 months, predominantly bleeding and then I flared up in the last 5-6 weeks before surgery. Needless to say I did not respond to any of the high dose drug treatments that were being administered in that short time period. Thus, I had to have surgery. This may come as a shock to some, but I did everything I could at the time to avoid surgery, due to extreme fear of the unknown as this was all very new to me. I went to three different hospitals when I flared up. The first due to the surgeons incompentance in the plan of treatment. The second, they put the fear of god into me and told me I had 1-2 days to live if I didnt have surgery. At the time I fooled myself to believe that my health wasnt as bad as what I was being told, so I discharged myself from that hospital and went to another for a third opinion. Well, they told me things were bad, but I wasnt at deaths doorstep just yet. I came to realize the truth of the situation when the severe diarrhea, bleeding, weight loss and medium level of pain that I was already experiencing was then accompanied by severe pain, sheer exhaustion, vomiting and two blood transfusions. So, a few days after that I let them do the surgery. During my stay in hospital I felt like I was in a whirlwind. Even though the doctors in the third hospital were most compassionate and worked hard with me to try to put my fears at bay, it would have been even more helpful if I had such information as this website or if I had seen final results from people who had experienced this. That is what I want to give to those who may have the misfortune of going through this illness and face these operations.
Danny Amore <firstname.lastname@example.org>
Melbourne, VIC Australia - Friday, July 02, 2004 at 02:37:43 (EDT)
Hi My name is Charlotte Im 18 years old and i live in England. Im having the j-pouch on Monday (5th July) due to a condition called fap. I've known about it for 3 and a half years. I inherited it from my Mom who nearly died because of it. Feel free to email me though as the op is now so near it may be some time before i can reply.
England - Thursday, July 01, 2004 at 17:23:48 (EDT)
I am 26 and I suffered from ulcerative colitis for only a year and a half but my symptoms were really aggressive. I used to be a full time athlete on the British rowing team. Although retired I had taken up competetive cycle racing. I tried to carry on even though my symptoms were getting worse and worse. You just don't see it coming as it grows with you; day to day you learn to cope. By June 2003 I was passing blood 10-15 time a day and after waiting 3 months for a hospital appointment the doctor put me on a large dose of oral and enema prednisalone aswell as another anti inflamatory drug, pentasa (sorry also for bad spelling of the drugs!). These worked in reducing the symptoms for a while but I was still bleeding. I regained enough energy to still race my bike, which rightly or wrongly made me think I was not as bad as I was! The symptoms flared up again so I was put on a heavy dose of pentasa tablets and enemas which gave me incredable headaches but controlled the symptoms. Then after an exploratory camara was put where no camara should be put(!) I had a major flare up which resulted in me being admitted to hospital for two weeks. I was given intravenus steroids, which made my face blow up but did nothing for my colitis. I was then put on intravenus cyclosporin which made me feel really bad but worked. I was sent home on a high dose of oral cyclosporin and a big dose of azothiaprine (again sorry for the spelling!). This combination turned my toilet habits almost normal, however I was now on the same dose of drugs as someone who has just had an organ transplant and I new that I could not stay on the cyclosporin for long. It made everything taste odd, I lost all sensation to hot and cold in my feet and hands and, because it was lowering my immune system, I was on antibiotics to prevent other infections. However every time I tried to come off the drug I would get to a set dose and I would flare up again, and the flare ups would be worse. After five months of this I decided I had lost this battle and with the doctor and my wife we decided that surgery was the only realistic option. I had tried a thousand and one alternative treatments alongside conventional medicine and I wanted my life back. So on March 2nd 2004 I had a total colectomy and a permanent illeostomy. I went for the permanent illeostomy for the reason that I wanted it sorted I did not want further surgery and any more complications. I have met many who have had the pouch operation and are very, very happy. I just felt that it was right for me and I made sure that I was fully up on all the information I needed! The surgery went well, but after a week my small intestine stopped working and and I had to have the bile drained, after a few days this cleared up I then developed an infection in the space left by my rectum and this too needed to be drained. After several different drains had to be inserted through my anus this eventually cleared up. I was in hospital 4 weeks and had the drain in a further 3 weeks at home. Now this may all sound like a horror story but through all this I did not have colitis anymore and this gave me incredible hope. I never felt I had made the wrong decision through all the discomfort. The reason I have written this rather long winded account is not to put people off, but to explain that with colitis we have a way out if things get to the stage where where you cannot live a normal life. Even with my drain in, I was back on my bike and a week after it was removed I went back to work part time for a month and then full time after that. I cycle 10 miles each way to work and carry out an active job, and at the weekends I ride my bike for 60-70 miles. I won't pretend that things are not different or sometimes difficult and their is a lot to come to terms with physically and mentally and I am along way off both of these, but I will get there. The bottom line is having an illeostomy was the best decision I could have made, it was on my terms and my stoma (named Stan) and I are getting to become good friends. I have my life back and I mean to enjoy every moment!!! If anyone has any questions don't hesitate to email me and I hope that I can help.
Tim Bedingfield <email@example.com>
Reading, UK - Wednesday, June 30, 2004 at 15:12:12 (EDT)
I had J-Pouch surgery Feb 16th 2004. This followed a period of about 7 months after emergency surgery to remove my colon which perforated (out of control UC) I was very fit and healthy again before the Feb operation (best 10km run time in 10 years!) Spent 8 days hospital post op then went home, but was readmitted about 2 weeks later with an internal abcess in a difficult place between the tail-bone and the pouch. Another 8 days in hospital with a drain being installed right through the buttock - very painful to have in, and after 7 1/2 weeks the docs agreed it had failed in it's task - I had to take morphine every day for the pain. A new drain was installed, this time through the anus and through the J-Pouch wall into the abcess. Within 3 days I felt hugely better and after 4 weeks it was removed following clear blood tests. I am still low on iron but gaining strength, and a couple of the 10kg lost, very quickly. There is s small (3mm hole) in the top of the J-Pouch, in addition to the larger hole made for the drain. Both of these need to repair before I can have the ileostomy removed. Anybody else out there had a similar porblem - if so, did the J-Pouch repair itself OK? It's my only worry now. I am scheduled for a meeting with my surgeon 15th Sept 04 and final surgery soon after. The only other issue I still have is a much more active ileostomy than it was before the J-Pouch formation - eg it is not uncommon for me to have to empty the bag 12 - 15 times some days and it is quite liquid at times also. Taking Loperomide and Codeine to help restrict this. Please contact me if you have had anything at all similar. Regards, Frank Swanberg.
Frank Swanberg <firstname.lastname@example.org>
Auckland, New Zealand - Monday, June 21, 2004 at 01:22:10 (EDT)
I am 14 months post take-down and living with a j-pouch. My digestive system is working fine, because I have gained back all my weight. I need to diet, but frankly am afraid to. My diet is very limited as it is, as many of my favorite foods seem to be irritating. Why don't nutritionists know anything about this?
I do not like to even contemplate return to an ileostomy, as I did not do well, either nutritionally or with getting the appliance to stay on and not leak. Seems I have traded burned out peri-stomal skin for ever-present peri-anal irritation. Has anyone else dealt with anal fissures and the resulting burning pain? I lost my entire rectum but retained the sphincter, thank goodness.
I wish I could get back to 50% of normal. I am on disability. I can't travel, because a "good day" can turn into a bad day in an instant. I make 12-15 trips to the bathroom a day due to the irritation, which affects continence. I leak badly at night. Of course this affects intimacy! Barriers don't work, and the doctor seems to think I just need to keep the area dry. Is there anything you have found that can help?
I used to climb mountains, sea kayak, hike into the deep woods and camp--all not possible now. So I have become a full time artist because my bathroom is ten steps from my studio. Still, I have days when the pain disrupts my ability to concentrate or create.
I do not want to return to an ostomy. I lost control of my life completely with sometimes three appliance changes a day!
Auburn, WA USA - Sunday, June 20, 2004 at 17:10:25 (EDT)
I'm 41 yr old male who had the J-pouch procedure done April 15 '04. This is a huge change for me since I didn't have any symptoms. I still don't know what I have specifically. I need to go back to a genetic counselor and have my blood tested again. I either have muir-torre or FAPs. I have symptoms of both. The reason for the J-pouch procedure was because when I went for my colonoscopy I had 50 pre-cancerous polyps (roughly), and there's a family history of colon cancer on my mother's side. So I went from going to bathroom once or twice a day to now roughly 5-7 times a day.
It's not as bad as I thought it was going to be. I feel 100%. I had the best doctor. He did the samwe procedure on Rolf Benersca. He was the kicker for SD Chargers when I was (much) younger. My doctor also claims to have done this procedure more than anyone else. I would recommend him in a second. I did look into other surgeons and none of them sounded too confident in doing the J-pouch procedure. They actually recommended that I wear a bag, but they would do the J-pouch if I wanted. The doctor I chose didn't hesitate at all about recommending J-pouch.
Stamford, CT USA - Tuesday, June 15, 2004 at 12:15:05 (EDT)
since may 24 2004 when I had a partial colectomy and ileostomy takedown my bm's have slowed down from 15 a day to maybe 5 a day. I just have to be close to a restroom after eating . I love reading the stories on here and even though I hate knowing anyone suffers from colon trouble it's nice knowing your not alone . I had my ileostomy 3 yrs. even named it rosebud . there's a site on the computer I have always loved and shows pics of stoma's and j-pouches it give me an idea what i was to undergo. it's called Shaz's homepage you can look it up on your search engine . My stoma is on there also . Please keep posting and know you all are in my prayers....
pickens, sc USA - Sunday, June 13, 2004 at 20:58:59 (EDT)
Appreciated to find this web today, it is very informative.
I'm suffering from UC since 1999,and I'm on medication which are not controlling my UC.Sometimes I have to go 10 times with blood. Doctors advised to total colectomy surgery with Jpouch because of frequent relapses.Please I need your advise if the surgery will be the right solution to my problem, and which hospital is the best for this surgery.Thank you
Sauda Ali <email@example.com>
USA - Friday, June 11, 2004 at 10:31:55 (EDT)
I am a 27 year old mother of one, I have had UC since Feb 2000, I have had no let up in symptoms since. I am miserable, this has cramped my style and is affecting my activities and what I can do with my son...I'm starting down the road to j-pouch surgery. Any thoughts you could send my way would be appreciated, I loved reading all of the sucess stories, hopefully I'll be sharing mine in the near future!
Sarah Biggart <firstname.lastname@example.org>
Lakeside, CA USA - Friday, June 11, 2004 at 00:38:59 (EDT)
Hello I am 32 yrs. old and on May , 24 , 2004 I had a colestomy and iLeostomy take down. I lived with a iLeostomy for 3 yrs. I have underwent 10 major surgeries and 6 minor one's in the past 4 yrs. I had a hysterectomy and the doctor messed up he ripped out my pelvic floor and cut my intestines I kept having sever blockages and several surgeries they did the takedown in order to try and save my life and live a life without being in the hospital I was getting put in every 2 weeks with a ng tube pumping my stomach. After my takedown I had alot of bm's a day at least 15 but they are slowing down alot. They are trying to tell me now I need a urostomy I am currently using a disposable cather trying to keep from it. I really enjoyed your site and all the post.
pickens, sc USA - Thursday, June 10, 2004 at 17:41:44 (EDT)
Hello, I am a 21 year old female and was diagnosed with Ulcerative Colitis when I was 12 years old. When I was first diagnosed I was very ill, and hospitalized in the Calgary Childrens Hospital. Thats when I was started on Prednisone and other 5-ASA meds. However after using the 5-ASA meds the DRs. found that I was intolarate of them and they caused ulcers throughout my intire digestive tract. So for the last 9 years I have only been able to use Prednisone. Just last week I finished my dose after 10 weeks of Prednisone. My family physician is very reluctant about me trying Imuran so I have now shyed away from that. And am sick of all the side effects of Prednisone, adn worried about there long term side-effects. He strongly suggested the j-pouch surgery, so last week I was to see a wonderful surgeon, and am scheduled to have my surgery early in September 2004. I am extremely nervous and hesitant about getting the surgery. I feel that maybe I have not used up all of my options, and that I may be worse off with the j-pouch. The longest I was in remission was for 2 years, and I am scared that I will never be the same after surgery. I was also wondering about the abilty to have children after the surgery, as I am recently married and would someday love to have children. Please e-mail me with some advise. Thank you. And thank you to all of your comments and discussions they have calmed me a little bit!
Oyen, Alberta Canada - Monday, June 07, 2004 at 00:42:49 (EDT)
Second surgery went fine 10 days ago. I am looking forward to a round of golf at the end of this week. Back to work tomorrow (but on a very reduced schedule). Hats off to the great doctors at Mt. Sinai in NYC?
USA - Sunday, June 06, 2004 at 17:29:17 (EDT)
Just found this site , 2 years with a pouch and having a bit of hard time with pochitus at present but overall very content with the pouch, still getting some urgency and surgery destroyed the nerves controlling ejaculation but all in all no more UC which destoyed any life quality I had.I hope to become a regular contributor to this site Thanks
Slough, uk - Friday, June 04, 2004 at 20:09:41 (EDT)
delaware, de USA - Thursday, June 03, 2004 at 07:49:27 (EDT)
If you scroll down you'll see my May 27th post sayign Im going to try VSL#3 to keep pouchitis away. Its been 5 weks and no pouchitis! I take 1 packet a day int he mornign and somedays I eat yogurt. I think I am on to something and will keep posting so I can chronicle my progress. Drop me a line with any questions.
New Castle, DE USA - Thursday, June 03, 2004 at 07:42:52 (EDT)
Thank you for a great and informative site, I am a UK citizen currently working
in the South of France so there is not a lot of support for me here
Brian Tomlin <email@example.com>
Peymeinade, France - Tuesday, June 01, 2004 at 05:02:19 (EDT)
I've been battling UC since March 1999. After my second hospitalization this past March, with great improvement while on high doses of prednisone, and full flare up when tapering off, I've finally decided I'm tired of the medications, side effects and always being tired. I met with a surgeon this past Thursday and came to this site looking for more insight. The success stories are really encouraging. Thanks goes out to each and every one of you. Please feel free to email me with any tips, further stories or words of encouragement. All will be greatly appreciated. God Bless You and Your Families!
Jacksboro, TN USA - Saturday, May 29, 2004 at 20:51:13 (EDT)
Hi. This coming week I will have my second surgery and reading all these posts has been most reassuring. I am 60 and my first surgery and follow-up were without complications. I was back in the classroom teaching within 15 days of the surgery and have not missed a day since. I hope the take-down goes as well. My doctor gave me tincture of opium to control dehydration and it worked like a charm. Thanks for sharing.
USA - Sunday, May 23, 2004 at 17:48:15 (EDT)
Thank you, I just wanted to give a greeting and tell you I like your website very much.
ÖÐ&supl;ú - Wednesday, May 19, 2004 at 21:39:49 (EDT)
I had J-Pouch surgery Sept. 16, 2003. I had nothing but problems from the start. First I got a post-op infection that nearly cost me my life. After that, I had to postpone the 2nd surgery due to a pouch leak. Finally, after the takedown, I have had a problem with an abscess that causes chronic paid and symptoms of severe pouchitis - actually, it was treated as pouchitis for months. We are still working to completely heal the pouch and abscess, but I would do it all again to be rid of that nasty disease. I know I am much better now and only have a short time to go before I am through the whole ordeal. Nearly every person I spoke with researching the surgery said it takes about 12 months to fully recover and get through the 'fine tuning' of the new body. I would recommend the j-pouch surgery to anyone that has UC that cannot be controlled 100% by medicine, diet, etc...
Jeremy Bisceglia <firstname.lastname@example.org>
Claremore, OK USA - Monday, May 17, 2004 at 18:29:57 (EDT)
Our opthamologist has detected lesions/freckles on one eye of my 6 year old son concurrent with Gardner's Syndrome. Does anyone have any info that could help me. His pediatrician can't say anything for sure and it may be too early for a GI scan. Has anyone been diagnosed this early and by what method? Thank you.
Sheboygan, WI USA - Monday, May 17, 2004 at 15:22:43 (EDT)
I joined this site for the first time in 2000/1 after my j-pouch surgery and was quite active for a while but later I had problems etc and stopped using the computers. Now I have a problem with the J-pouch which is being examined tomorrow and I've been trying to get someone to give me some advice for the alst 3 or 4 days - nobody wants to discuss it .... my conclusion - internet support groups are great but take for ever to respond
Tain, Scotland - Sunday, May 16, 2004 at 16:47:55 (EDT)
Had J pouch surgery 4years ago.Not looked back.Anyeone like advice.
Alan ball <BALLWadball@aol.com>
whitchurch, shropshire england - Saturday, May 15, 2004 at 17:14:30 (EDT)
I'm a 48 yr old woman I was dignosed with uc at age 19 after suffering for 20 years I had the j-pouch surgery done in 94 best thing I ever done. I had my surgery at Mayo Clinic in Rodchester MN Any one want to talk or have ? feel free to write Peggy
Helena, MT USA - Friday, May 14, 2004 at 21:27:51 (EDT)
Hello, My boyfreind had the J-Pouch surgery 2 years ago after over twenty years of the bag. He is having a terrible
st marys, PA USA - Monday, May 10, 2004 at 19:45:23 (EDT)
I was diagnosed with UC when I was 16. I only had one flare up that continued to get worse as time went on. The flare up lasted from May to January. (a 9 month long flare up.) Everything about UC was like undergoing the most horrible torture imaginable. I am 18 now, and it has been 1 year and three months since my surgery. At times, it has seemed like getting the j-pouch was a mistake....But looking back on it I would rather have been killed then continuing living with UC. Getting the J-Pouch was the best decision I have ever made, and although I have not yet made many decisions in my life, I'm sure it will be the best decision I have ever made for a long long time.
Garrett Whitney <email@example.com>
Marblehead, ma USA - Saturday, May 08, 2004 at 16:35:32 (EDT)
Hi Someone please tell me more about the cost and hospital stay for J-pouch. Thanks!!!!
Va USA - Thursday, May 06, 2004 at 20:12:17 (EDT)
Hello. I am scheduled for first surgery next week (May 10th). Worried about the pain control. Would love to hear what type of pain control others received after their surgery and what worked/what didn't. Surgeon and I will discuss once again before day of surgery. Thanks so much for your time.
Plymouth, MI USA - Sunday, May 02, 2004 at 13:49:41 (EDT)
Hi all, I've had an ileostomy due to UC for nearly 2.5 yrs and will be going in for J-pouch surgery in about 4 wks time. Will be about 3 mths after that they do the take-down step and the ileo will be gone completely. Aprehensive and pretty scared (naturally!) about the procedure but have done a lot of reading and research on it so I think I have pretty much covered everything that I could be in for with the surgery.
You'll probably be seeing a bit of me on here while I get accustomed to things with the J-P!
Hobart, Tas Australia - Thursday, April 29, 2004 at 21:57:49 (EDT)
i am doing a project on ostomy, and it would be very helpfull if someone could answer some questions for me
sincerly Laura McMaster
peterborough, ___ Canada - Thursday, April 29, 2004 at 09:54:34 (EDT)
Had jpouch surgert 7/2001. I have been having some bouts with pouchitis but I respond to Flagyl almost overnight. I am going to try VSL#3 this week. I feel like the antibiotic has killed the pouchitis so now its time to try and maintain remission.
J pouch surgery is never easy, but neither was living a life with UC and wishing I would die - its a big step in the right direction if you can't live life to the fullest. I feel like a success story and am here to help.
New Castle, DE USA - Tuesday, April 27, 2004 at 22:32:33 (EDT)
Scheduled for the J-Pouch on May 10th. Would love to hear words of wisdom. Thank you.
Plymouth, MI USA - Saturday, April 24, 2004 at 16:38:07 (EDT)
I have had my j-pouch since October 2003.. I'm doing alot better than before and love not having an ileostomy, but I feel alone at times, especially through bouts of pouchitits and increased bowel movements, any advise would me great..
Jennifer Roundy <Roundyx6@aol.com>
Plain City, Ut USA - Thursday, April 22, 2004 at 23:06:22 (EDT)
HAD MY SECOND SURGERY OVER 2 YEARS AGO. EVERYTHING OK, EXCEPT I STILL WAKE UP 2-3 TIMES PER NIGHT TO GO. STOOLS ARE OK, BUT THE FEELING OF HAVING TO GO WAKES ME UP. HELP!
JOHN JANSKI <JTHROATSNAKE@AOL.COM>
CASPER, WY USA - Wednesday, April 21, 2004 at 11:31:23 (EDT)
Hi everyone, I have recently had a jpouch, due to uc. I am at the moment taking imodium to slow my bed time visits to the toilet, I am experiencing cramps in my stomach is this normal...if anyone knows could they, please give me some infomation, it would be very grateful. Is there any other thing I can take, to slow my visits down to the toilet during the day, I dare not take imodium in the day because I can not get a balance between going to the toilet too regularly or not at all, And when I can not go to the toilet due to imodium, I am scared of getting the piles...What can i do?...I only had my bag removed in january this year. I know it is only early days yet..but any ideas would surely help.
craig jones <firstname.lastname@example.org>
ENGLAND - Wednesday, April 14, 2004 at 13:55:13 (EDT)
I had my surgery 10 years ago best thing I ever did
Helena, mt USA - Sunday, April 04, 2004 at 21:28:47 (EDT)
Hello...I just spent some time reading a good number of entries on this page, mostly about people with UC who opted for the J-Pouch. I have been battling UC for the past 2+ years, and I haven't ever really reached any remission. After a terrible 3-month flare early this year, I've opted to go with the J-Pouch surgery, scheduled in 2 weeks. I'm lucky and will have it all done in 1 step. I came on here to read about what others have to say, and I have to say, there is a lot more negativity on here about the surgery and complications then I had thought.
If anyone has anything positive to say or any works of encouragement, please email me! I need it right about now!!
Wish me Luck!
Coram, NY USA - Wednesday, March 31, 2004 at 23:54:54 (EST)
I would love to get in touch with the 3 ladies who for one reason or another are having or have had their pouch taken out, I think their names are Joanne read from London England and Shell, I am having my pouch taken out 28th April 2004 and am desperate to talk to someone who has been there. I have felt very alone as my stoma nurse could not put me in touch with anyone who had their pouch out and the support has been literally nil, please help me.
Vanessa Harrison <email@example.com>
United Kingdon, England - Tuesday, March 30, 2004 at 19:47:13 (EST)
Hi gr8 website. I had the J-Pouch over 9 yrs ago and still go the bathroom 3-9 times daily. Usually I take 8 prescribed Lomotil before work and I can go about 8-10 hours with no bowel movement. I dont regret having the surgery one bit. I had a partial colectomy in 92, but several years later the UC came back with a vengance, so I decided to have the J-Pouch. Right now I am exp. alot of painful bowel movements and am trying to figure out whats causing this. Is this Pouchitis? Not sure what that is...anyway if anyone wants to talk or is about to have the J-Pouch surgery feel free to drop me a line.
David C <David1ray2@cox.net>
Phoenix, Az USA - Tuesday, March 30, 2004 at 14:09:51 (EST)
I suffered with UC for 3 years before I had my surgeries. I had been hospitalized numerous times, missed many weeks of work and the disease was dictating my life. Finally on June 3, 2002 I had a sub-total colectomy. I had an ileostomy for 3 months which was wonderful. I felt like a million bucks! I returned to the hospital on August 29, 2002 to have my J-pouch constructed and attached. I function normally now with 8-10 bowel movements per day. It seems like alot but it's really not that bad. It sure beats the pain and agony of the disease. If I had to do it all over again I would.
Sue Mailloux <firstname.lastname@example.org>
Belle River, Ontario Canada - Tuesday, March 30, 2004 at 00:54:28 (EST)
hello i have FAP, and got my j-pouch done at the cleveland clinic...I changed my address so please email me at the new one...I love to talk to anyone with pouch surgery..I am doing so good, and i love my j-pouch...Best regards to all......
Allison raia <email@example.com>
garden city, ny USA - Friday, March 26, 2004 at 22:41:10 (EST)
I am 30 yrs old, was diagnosed with UC almost 9 years ago. 2 1/2 years ago after the birth of my daughter, I was hospitalized with a flare-up then underwent emergency surgery that left me with an ileostomy, to be followed up 2 surgeries later with the finishing j-pouch. It's hard when it all hits at once, post-pardum depression, topped off with having to let go of my new baby and spending most of her first year in the hospital. I'm still trying to regulate my diet and sleep schedule. We're thinking of having another baby. My surgeon says I'm okay, but I'm scared to death of my body going through all those changes again.
Centreville, VA USA - Wednesday, March 24, 2004 at 18:45:37 (EST)
THANKS FOR INFO ON DIET AND EXCERISE I AM 48 YRS COLON CANCER SURVIOR HAD SURGERY 7/15/04 STILL FIGHTING TO GET COMFORTABLE WITH ALL THE CHANGES IN LIFE THAT COMES WITH THE OPERATION.
Bill Liddell <BILLL@CROWNBOILER.COM>
Phila., PA USA - Friday, March 12, 2004 at 11:46:01 (EST)
I have a question.
I had my surgery in February, 2001, so it has been three years. I have really had no problems except for frequency, which is fine and I can deal with it. But, tonight, I noticed bright red rectal bleeding twice with bowel movements. I hate to go back to the doctor's after all I have been through (as have all of you I am sure), any ideas on what this could be? I guess you could say I am scared - no matter what I never want a colostomy again. Looking for advice...........
Pittsburgh, PA USA - Wednesday, March 10, 2004 at 00:21:09 (EST)
Hi! I'm a 20yrd single mom and I've had Crohns for almost 5yrs. It's never been really bad but lately it's getting harder and harder to go to work, clean house and take care of my daughter without passing out.I am a strong willed person and don't hardely let others know when I'm sick.Well it's getting harder to hide, I can't take a movement with out crying and the cramps are getting worse.I don't have insurance and the last time I saw a doctor I weighed 105lbs and all my clothes are getting to be to big.. what should I do??Is there anyway my daughter could have crohns????
Jacksonville, AR USA - Saturday, March 06, 2004 at 16:11:24 (EST)
hey everyone.my name is emma and im a 22 year old female.i was diagnosed with uc in feb 03. a month later i was taken into hospital and had to have my bowel removed.a BIG shock! i woke up to find these two huge things stuck to my body. one was of course the colostomy bag and the other was a fistula seal.it just all happend so fast i never new what was happening to me.when i went into hospital i was in a prety bad way. going to the loo bout 20 times a day, chronic pains, being violently sick and looked awful! i never slept at night cause i was in so much pain and whenever i did drift off to sleep i had to get up to go to the loo!i ended up on 100mg of predisinolone a day,asacol and so many more tabs i cant remember their names.i was a mess. i remember the surgen coming into my room on the thursday to tell me i was beyond medication and on the friday i was having surgery.i cried myself to sleep that night. i hadnt even heard of colitis before and hear i was in hospital having surgery to remove my diseased bowel and a monstrosity bag stuck on my body.that was almost a year ago and im like a brand new person. i think i have coped really well.i was so dertermined that this was not going to ruin my life and whats happend has happened and theres nothing i can do about it. i have to be strong and get on with things.of course i have broke down in tears many a time and wanted to rip the stupid thing off my body but i kept telling myself its not forever, it will HAVE TO GO! my friends and family have been great and my boyfriend has been so suportive.i had further surgery in september to have a J pouch formed and im now awaiting a date for reversal.my second opp didnt go so good.my skin was so soft because of the steriods so they had trouble closing my wound. about a week later half of it had split and i was getting it packed and dressed every day. i then got MRSA and went totally down hill.i was constantly sick, couldnt eat,slept 24/7, lost more and more weight AND WAS REALL RUN DOWN.it took me a long tome to recover but with LOTS of positive thinking i eventually got there.i still cant believe what has happend. ive been through a really rough time and no one can tell me why. i have so many questions but there are no answers. i may be being selfish here but i just hope my pouch goes well and i never have another problem in my life again. i dont think i could take anymore. i just want to say to everyone who suffers from uc or has a pouch no one can understand what we go through and we are all extrodinary people.i pray that none of my children get this because i could not bear to see them go through what i have. email me if you wanna chat. take care
glasgow, scotland - Thursday, March 04, 2004 at 18:56:42 (EST)
H,I am a 29 year old female with FAP..I had j-pouch surgery last year at the cleveland clinic..My doctor was amazing, and i am back to normal now..I am looking to chat with anyone who has FAP..its so rare..
allison raia <firstname.lastname@example.org>
garden city, ny USA - Sunday, February 29, 2004 at 02:38:55 (EST)
hi i am jolenes mum and wish to say a big thanks to all showing concern for jo at this time.
lincoln, uk - Saturday, February 28, 2004 at 19:10:47 (EST)
I had my first UC problems when I was 12. For 5 Long years, and every medicine they had, I decided to go with the surgery for the Illeostomy. I spent 9 months with the Illeostomy and knew that I wanted the Pullthrough. I went through many bouts with Pouchitis from 18-21 and then I pretty much went into full remission, with the exeption of the diarrhea. I am 25 now and am now fighting with the apparent Post Traumatic Stress(Chronic Nightmares)that I cannot let go of. If anyone has any advice I would love to talk to you. Thanks and it finally feels like I am in the company of people who know, exactly, what I have gone through.
Severn Evanson <email@example.com>
Blackwood, NJ USA - Saturday, February 28, 2004 at 18:53:37 (EST)
I first flared-up with UC in 1999 and have had controllable flare-ups until Nov 2003. My GI put me in the hospital on Dec 10, 2003 and after losing alot of blood and having 2 transfusions, I had the 1st surgery and feel pretty darn good. I am waiting to have the 2nd surgery and am very optimistic, especially after reading all the stories here. Good luck to you all!
Mesa, AZ USA - Friday, February 27, 2004 at 23:30:52 (EST)
Hi I have had my pouch for 1 year, best move I ever made, I am now down to about 4-6 visits to the toilet a day and with the help of 1 codeine phophate a night I sleep right through the night, still use barrier creams on occasions, do not get any burning or soreness, I have no probs at all with the pouch, travel a lot fly to the USA (9-10 hour flights no probs), life is now back to normal, like a couple of beers but find red wine upsets the pouch, not found any foods yet that i cant eat, enjoy a good curry with no probs, all gets a lot better in time, I find I have to be very positive and focussed to keep going !
Plymouth England U.K.
Rob Thomson <firstname.lastname@example.org>
Plymouth, Devon U.K. - Sunday, February 22, 2004 at 14:31:17 (EST)
I am a 35 year, caucasian female that had j-Pouch surgery done in May 1996 and then my "takedown" in August 1996. I would not to go through it again, but if I had to make the decision to have it done again, I would. In other words I highly recommend it!!!! If you are sick of being sick!!! Prednisone is POISON!!! the pain!!!! bleeding out your butthole! the crapping your pants!!!! Basically~just exsisting~not having any kind of a life! Yes! I do go to the bathroom a lot! and I have had a few instances with incontinence!!! But, I it nothing compared to full blown ulcerative colitis! I do everything now, in line skate, bike, run, eat, drink, travel, and just recently obtained my dream man!!! Any questions or concerns? Please do not hesitate to give me a holler! God Bless!
Minneapolis, MN USA - Thursday, February 19, 2004 at 12:21:33 (EST)
Hi I am 28yrs old, and 2 yrs ago I found out that I had uc, straight away I was rushed to hospital, I spent 5 months in hospital going through every procedure to calm down my first flair up of uc.I had all the normal steroids which did not work they tryed some more special steroids which did not work, they moved me to leeds general infirmary. Here I found that I had severe uc I had to have surgery, In 3 stages I was gutted at first because I was a fitness instructor , I loved boxing , thai boxing and ground fighting, and any physical sport what out there. I walked into hospital 14 and half stone of muscle with a six pack,I walked out of hospital 5 months later 10 stone of skin and bones with a ileostomey bag on my side I thought I would never train again at my sports which I loved. 6 months later I was back to normal with a bag on my side , and I was king of the boxing gym again. MY life was back to normal. what i am trying to say is if you do have a bag on your side it is not the end of the world, you can live on and do everything you did before, fair enough it is a eye sore but who cares I am a live. and can do ny thing I want to. I have recently had the bag removed and had a j pouch, it is hard going at the moment as I have only had it 2 weeks. if this does not work out for me I will definetly go back to my bag, which I now miss. I am going to the toilet about 5-6 times a day and every hr throught the night. I hope the night time toilet runs calm down, if they do I think I can handle it, Superb web site it made me feel good when I found it, and I dont feel alone anymore, my email mail adress is open to anybody who wants to talk.One thing I do want to say is that I am in the process of wrighting a fitness programme out for people who have gone through a bowel disease surgery and are intrested in getting fit again, I will have to get it passed by a specialest though first , if anybody as any good suggestions please email me.
craig jones <email@example.com>
pontefract, yorkshire england - Wednesday, February 18, 2004 at 12:19:52 (EST)
I am 44 years old and next month will be a year since my Jpouch surgery. I am so much better and so glad that I had the surgery after suffering with UC for 18 years. My Nephew is 26 and had the same surgery for the same reason one month before I did. He is my sister's child. Does anyone else have other family members that had the same thing. I heard that it can be hereditary. We are both doing great! He had his done in Iowa and I had mine done in Seattle. Life is so much better.
Karen Matthews <firstname.lastname@example.org>
Cascade, MT USA - Monday, February 16, 2004 at 00:55:09 (EST)
It's really great to finally see a website that focuses on "J-Pouches" for a change! I've been a certified visitor for the UOA now since 1987, also the year my 'J-Pouch' was installed and it's good to see there are more and more folks out there that are willing to talk about this particular disease now. Even to this day, I visit with many patients that are scheduled for this surgery here in the northeast part of the great state of Texas. Guess I've always looked at this surgery a 2nd chance on life of being normal and with lots of patience, it does work and well. Of course there are set-backs, but all in all, it's been worth it to me! ...God bless you all...
White Oak, TX USA - Saturday, February 14, 2004 at 16:10:31 (EST)
Hi! My son, Alasdair, has had three step surgery following a single acute attack of ulcerative colitis. This followed on severe acute pancreatitis, caused by an infection of the gall bladder, resulting in a cholecystectomy and pseudocyst dainage, all on his twenty-first birthday. Some present! However, after his takedown surgery on 13th December 2003, things were going well till the dread "butt-burn" struck. Fortunately, he was due to see his surgeon and she was of the opinion that bile salts were at the bottom (?)of this and prescribed Questran (generic name Cholestyramine ) a powder mixed to a suspension with water or fruit juice. it was rather like a miracle cure - the soreness disappeared within a day and, three weeks on, is still at bay. Cholestyramine is primarily used to reduce cholesterol, but it works in conjunction with the barrier creams.
Anne Ide <email@example.com>
Glasgow, Scotland - Thursday, February 12, 2004 at 07:41:46 (EST)
I would like to know if anyone has Gardner's Syndrome or FAP? Please email at firstname.lastname@example.org
Kathleen Carey <email@example.com>
Hermiston, OR USA - Wednesday, February 11, 2004 at 13:07:24 (EST)
I was diagnosed with UC in 1986 and in and out of remission for years until Setpember of 2000 when I had to have a colostomy or die. I then had the j-pouch reconstructive surgery in January 2001 which really gave me my life back. Thank God for everyone that played a part in my recovery. I am struggling right now with swelling and pain and tenderness on the left side of my scar below my belly button and I think maybe it is from pulling some muscles from lifting something too heavy last week. Has anyone experienced this? My husband thinks I need to go get this checked out but I am hoping it is only a strained muscle. Please contact me if anyone has some knowledge on this subject. I am a 46 year old mother of 2 and going back to the hospital for even an x-ray scares me to death. I live with the fear of having to give up my j-pouch and go back to a front bag again. That is just the worst possible.
Ginger Mitchell <MRSGCM@aol.com>
Houston, Tx USA - Tuesday, February 10, 2004 at 12:34:02 (EST)
Great site! I've had my pouch since 2001 and my only struggle is a burning, raw feeling inside the anal canal at the opening of the pouch, in between and during bowel movements. My Dr. has always dismissed my complaint saying that it will pass. I think he thinks I'm exaggerating, but it is very uncomfortable especially when you have gas pressuring down. Has anybody experienced this? and do you have any suggestions? Also, How do you pass gas without having an accident? I can only do so by laying on my stomach (not always on the toilet) which is very inconvenient if you're at work or out. Any other experiences along these lines?
Mayra Bassett <firstname.lastname@example.org>
Boca Raton, FL USA - Monday, February 02, 2004 at 15:06:00 (EST)
I am a 72 year old male with a Total Proctocolectomy with a Brooks Ileostomy that I acquired in 1996 after having Ulcertive Coilitis for 18 years.
I had prostate cancer prior to the operation and the radiation implant seeds ruined the elasticity in
my rectum causing it to be removed necessitating the proctocolectomy.
It has been a blessing for me as my wife and I had absolutely no social life as I
was wearing Depends, etc full time. With help from a support group, I got along
just fine and recommend support groups highly. I have had
2 open heart surgeries and a heart attack but none of them
were as depressing as this operation....however, compared
to my previous situation---I would not want to go back to
the way I was. It is wonderful to be able to get out
and enjoy life again. In fact, even tho I am retired I
drive tour buses (part time) and am gone from home sometimes
for a couple of weeks. I just pack my Ostomy supplies and
return to the
Bill Lundy <email@example.com>
Mt. Airy, NC USA - Sunday, February 01, 2004 at 00:27:25 (EST)
Old guy with an ileotomy for almost 8 years. Don`t handle pain well. This is still better than what U/C put me through.Life is great even with the bag. The J-POUCH sounds good if the gain with out the pain were possible.
Ralph Sweeney <firstname.lastname@example.org>
Oakland, CA USA - Saturday, January 31, 2004 at 15:52:53 (EST)
I had my surgery in 1995 with no major complications. I have over a period of about ten years had four episodes of severe gas that cause extreme pain. The pain remains for around six hours. Has anyone had this trouble? Any suggestions?
Frances Riter <email@example.com>
USA - Saturday, January 31, 2004 at 15:50:40 (EST)
Great to find and explore this site. Will join up when I have more time. I had an Ileo for UC in April 2002. Have had rectum left intact in hope of a reversal some time this year, however last summer I had a blockage wi\hich did not clear by the usual methods and had major surgery to dissect adhesions strangling my bowel in August 2003. Am terrified of more surgery, I want to be as normal as possible but don't want to go back to the constant trips to the bathroom EVER!!! Iknow that the J pouch isn't alwaays a complete success and that it comes with it's own complications but I feel trapped between the devil and the deep blue sea.
Any advice - anyone???
Helen Garratt <firstname.lastname@example.org>
UK - Thursday, January 29, 2004 at 16:22:14 (EST)
Hi to everyone. I just read the article in the O.Q. about Bill. I am interested in finding other people who have had a Urinary Continent Kock Pouch. I have had mine since the spring of "86 and am so happy. I had a standard urostomy in "64, after several years of infections and proedures to "save" my bladder. I had various birth defects, which was one of the reasons for my problems with my bladder. So, in closing, feeling great, I try not to let anything hold me back. Would like to get in contact with others who have the u-kock pouch. Thanks.
Dianne Watson <email@example.com>
San Diego, Ca USA - Wednesday, January 28, 2004 at 22:05:51 (EST)
Thank for all the info .I have had a J-pouch since 96 and have had alot of surgeries for adhesions and blockage but time went on and surgerys disapated and now surgery free for 2 years.It is amazing.
Walker, MI USA - Saturday, January 24, 2004 at 22:52:31 (EST)
New to the site, Hope to get to know some of you
Kent Pierce <firstname.lastname@example.org>
East Wenatchee, Wa USA - Saturday, January 24, 2004 at 20:31:01 (EST)
HI THERE,VERY INTERESTING SITE.IM 41 HAD UC. FOR SIX YEARS,HAD NO QUALITY IN MY LIFE WAS SCARED OF HAVING SURGERY FINALLY GAVE IN ANYTHING WOULD BE BETTER THAN PAIN AND STEROIDS.HAD SUGERY 2001 NOW HAVE POUCH .IT HAS GIVEN ME A NEW LEASE OF LIFE,I REALISE NOW I HAVE MISSED OUT ON SO MUCH,I WISH ALL THOSE YEARS HAD'NT BEEN WASTED. I AM A LITTLE ANEAMIC AND HAVE DEVELOPED OVERACTIVE THYROID BUT THEESE ARE ONLY LITTLE THINGS.HAS ANY ONE EXPERIENCE OF THE ANEMIA?
ber flan <ber email@example.com>
co.clare, USA - Friday, January 23, 2004 at 16:26:00 (EST)
hi i am a 50 year old pouchie.i have had it for 2 and a half years now after suffering u/c for many years.my g.p said there was nothing wrong with me for years , so i did get very ill before someone would help me.i do find these sites so good, even if i feel like the only one to have gone through this, i just turn on the computor and all my friends are there. we dont have to meet to help each other.but some times it nice to talk..
diane young <firstname.lastname@example.org>
worthing, west sussex england - Thursday, January 22, 2004 at 16:34:41 (EST)
Hello everyone. I am new to the J Pouch Surgery. 8 weeks to be exact. Would like to talk to others, find info and generally feel like one of an international brotherhood of Colitis survivors. thanks, cheers,
Dunedin, New Zealand - Tuesday, January 20, 2004 at 01:29:20 (EST)
I just had the first surgery for the J-Pouch, and will be undergoing the second in about a month. I've had quite a bout with pancreatitis before and directly after the surgery and I think I am still dealing with it but my doctors are all disagreeing with eachother on the issue. I also think I am suffering from adhesions but...the doctors wouldn't want to cut me open just for that, they just sent me home with pain meds. I am 22 and would like to know what kind of pains anyone else may be having or have had. What kind of complications can I expect? I had to have the surgery or I would have died, I just want my life the way it was before the bag, without the UC pain of course. Please email me and let me know of your experiances. I don't want to walk into recovery blind. Thanks, Natalie
Natalie Chappelle <email@example.com>
Overland Park, KS USA - Saturday, January 17, 2004 at 03:18:50 (EST)
I have had my J-pouch since 1989 due to UC. It was a decission that I would make again. It has not been without it's problems; pouchitis, narrowing in the ileoanal anastomsis, surgery for narrowing because of scar tissue, off and on diarrhea, and pain. It took a couple of years to fully return to a life when it did not include UC. For ten years after the surgery I had been able to resume flying, skiing and almost any activity removed from a bathroom.
Since then, Ire-developed symptoms of UC again. This time it was confirmed that I have Crohn's Disease. Not a good thing now that I have a pouch, but It might define why I was having pouchitis all the time. I probably was having a fare-up of Crohn's. So I am currently taking medications: ie. predisone, imurane, etc.., for Crohn's and things are starting to get better.
I have been through a lot, and over the years even the j-pouch surgery has changed. I still feel that this procedure can really be a life enhansement, both mentally and phyically. I have not yet read or heard something thing from someone else that I don't thing I have not experienced. The only real hard part, is finding a good doctor that understands you and the j-pouch as a great alternative. Doctors usually have never been in our position or face living the rest of your life on heavy meds or a bag. This is where being able to contact other people and understand this proceedure and it's good and bad side effects is great!!
If I can ever help by drawing on my experiences, please contact me.
Thomas G. Niepoth <firstname.lastname@example.org>
Eagle River, AK USA - Thursday, January 15, 2004 at 18:30:21 (EST)
Your website and the UOA site has been very helpful in making a very aprehensive decision on getting my surgery.
I was diagnosed in '95 with UC and was put on all the usual drugs:prednisone,asacol,imuran,rowasa & cortosone enemas, iron for bleeding and even B-12 shots for lack of energy.
I tried every diet in the book in combo with the drugs and gave each diet a long time to see if it would help me go and then stay in remission. That was an adventure in itself. Sometimes something would work but it didn't last that long and I was back with a flair-up. I was lucky enough at one time to go into remission that seem to last around 9 months. Well 2001 came along and I really started to feel the effects of this disease and was in bad shape, the symptoms got worse and the doses got higher. By early 2002 nothing was working and my emotions were getting tired. When that started to happen my Gastro doctor mentioned surgery, of course I said to myself no way. But was curious about it and started searching the web. My doctor got me on the UOA website and I found your wonderful site, (thank you). After another year of struggling with UC I decided to go ahead and do the surgery. I am lucky enough to have great support from my wife and family and I was also tired of the embarassing accidents and all the time sitting on the toilet with pain. I was referred to an excellent Dr. Who is Dr.Yamashita in Federal Way,Wa. and the hospital was St. Francis which is also in Federal Way. I Checked in the hospital on Sept.16th about 6am, after a night of the horrible cleansing of the system, and was a little scared but I knew I was done with the pain and agony of the disease which brought me to this day. When I woke up my family was there to give me more support, I love them all. With excellent care at the hospital I was doing great and was walking after a day. Things seemed to be better already. The 5th day came along and I wasn't passing gas out of my stoma and very little fluids were getting thru, I started feeling pressure and alot of pain that evening. It wasn't a restful night and when the doctor came to visit me early in the morning I was in extreme pain. He upped my dose of pain meds but it didnt help that much. I went in for 2 ex-rays and he found nothing. But the pain was getting worse. He decided to do a CT-scan to see what was really going on. That's when all hell broke loose, The nurses wanted me to try and drink some liquid that would make my insides glow when they did the scan. But I was in such extreme pain there was no-way I was going to get that stuff down. I was shaking with a high fever and my heart rate was very high. They got me back to my room and gave me the really good stuff, shoved a tube down my nose along with all the other tubes I already had in my arms to pump what I had in my stomach. I started to feel some relief after an hour, or so it seemed and the nurses went back to work with trying to get that fluid in my body. This time thruogh one of my tubes I had in my arms. I finally got to the scannig room still with the shakes and high fever, but managed to get thruogh it. The doctor came in almost right away and told me in a gentle way that my internal pouch was strangled by my small intestines and that the pouch had died. He told me that he had to go back in and remove the dead pouch. At that point I didn't care I just wanted to feel like I did when I woke up from the first surgery, Alive and ready for a new life. I woke up about 2am the next morning with my wife by my side. I think I felt more for my wife than the pain I had for myself, she had to deal with that whole 24hrs of trying to find out what was wrong. Then dealing with me having a 2nd surgery in less than a week. Well I got out of the hospital after 17 days and 20 less pounds. I'm on my way to recovery and the the doctor said it's going to take longer than I want it to. I'm back to my wieght which is 160lbs.+/- a couple and thats where I want to be but I still feel weak with a few days here and there feeling some energy. I am having some inflamation on the tissue left on the little bit of rectum I have left. The doctor said he left it there so if I decide to get hooked back up I will be able to be continent. I have been using some anti-inflamatory supositories and I'm still on pain meds.I'm not sure what to do at this point it has only been about 3 months. I have no regrets on getting rid of my colon, and I have been back to work at my night gig. If there is anybody out there that has any words of wisdom or encouragement that would be greatly appreciated. Thanks again for this wonderful sight..... Dan, Federal Way,Wa.
Dan J <email@example.com>
Federal Way, Wa USA - Wednesday, January 14, 2004 at 19:56:42 (EST)
I was diagnosed with ulcerative colitis in 1993, only 17 years old at the time. I believe I had this at a very young age because I can remember having stomach pain through out my childhood and missing School. And I always had a low energy level, but not exercising plays a big roll in that too. I also believe Ulcerative colitis is hereditary because my Uncle on my Fathers side had the same condition as mine. However, it was in the late 70s or early 80s and went UN diagnosed until the bowel basically disintegrated to nothing causing him to have a complete colostomy to save his life. Alcohol played a big roll in dissolving my uncles bowel as well.. My uncle is doing great and has lived a healthy life with his very manageable colostomy. Its Funny because I never even knew he had a colostomy until my Aunt told me after I had been diagnosed. My Aunt is a RN and was very resourceful and supportive to me during the whole unimaginable ordeal. I was lucky to have friends and family who were there for me. Before I was diagnosed I had visited my Family DR. many times with severe abdominal pan, frequency in bowel movements around 16 or more a day with bloody stool, mucous, or just plain blood. This went on for weeks until I finally landed myself in the emergency room needing something for the pain. After receiving more tests including an ultra sound which had nothing to do with the intestinal area. The on call ER Dr. referred me to a Gasterternologist in Kirkland, Washington. His name is Dr. Arnold Levin. I explained my symptoms to the Dr. and refused to be probed at because of embarrassment, but dont forget I was only 17 at the time. However, Dr. Levin ended up being very understanding. He told me before even performing the colonoscopy that he believed I had Ulcerative Colitis. And he nailed it right on the head. After taking the biopsy and shipping it off to the University Of Washington Lab. It was found that they were 99.9% sure that I had Ulcerative Colitis. Dr. Levin started treating me right away. With Sulfa Zaledine, Prednisone, and other enema type steroids. This went on for about 6 months with no success. My disease was rapidly manifesting itself. I married a Sailor on the USS Nimitz when I was 18 years old, which turned out to be a blessing even though the marriage only lasted two years. After we were married I went to see a Gasterternologist at a naval Hospital in Bremerton, after under going another colonosopy. They hospitalized me for a week with a prednisone drip and a liquid diet, to try and get rid off the flare up. This again did not work and the guy I was seeing there was a complete ASS. So I moved onto Madigan Army Hospital in Fort Lewis, WA. It was there that I found a team of Drs that were my saving grace. They were all very young and good looking Men which made it even more embarrassing at times having my young butt hanging out every where. But it got easier each time I went into the office. After undergoing yet again another colonoscopy they presented the option of the Illeo anal pull though with a J-pouch. It freighted me, but I was in bad shape relying on painkillers to ease my suffering, vomiting in the wastebasket while sitting on the toilet day after day. And now unable to make it to work. The way I see it now, is I had no choice. Surgery was my only option I had left. I had even started to get bruising on my legs which was the disease manifesting further. So I met up with the surgeons at Madigan. They went over the procedure with me and brought in a Civilian Surgeon from Tacoma General to head the operation. This dumb lady went in and took a foot and a half of my large intestine out and then sewed me back up because she thought it looked like CHRONS. How could it be chrons when I had 3 specialists and 4 biopsy that said 99.9% it was Ulcerative Colitis? I was sure it was Ulcerative Colitis and so were all the other Drs I had seen. So we fired the Civilian Surgeon from Tacoma General who was obviously in way over her head. And they called for an Army Pediatric Surgeon, Dr. Randall Holland who happened to be doing work in Honduras at the time. I believe I had to wait a month or so for him to get back. At that time, they started the process with a team of about 10 surgeons looking after me. It was the best care I had ever received in a hospital. I had to go through 4 more surgeries. But they wanted to heal the effected area, so I was with a colostomy for a few months. I had all the surgeries performed in a period of one year. The last surgery was the longest and most painful. I was in the operating room for nine hours, but it was finally over. The pain in my abdomen was gone. I had lost about 15 pounds during the ordeal but gained it back within the first year. Now, I had to learn how to live with the J-Pouch. A few helpful hints, foods play a big roll in your bodies reaction. I havent given up anything but Its all in moderation. I learned eating small amounts through out the day is better than eating big meals. I am a lover of Mexican food but the salsa kills me so you should eat it in moderation. Any acidic foods should be eaten in moderation. You should never go without food for a day because that will make your possibility for leakage greater. Also, for the people who were complaining about soreness and redness in the bottom. I suggest keeping your bottom very clean and dry. Use Charmin Ultra toilet paper, its the only kind that works. Shower and dry your bottom with a hair dryer. This was a tip given to me my a nurse who is to with a J-pouch. Just make sure you do not burn yourself. If ointment is needed, which it shouldnt be unless you are ignoring these simple tips. Than use Calmoseptine 1-800-800-3405. You should be able to purchase this at a medical supply place or call the company to find a distributor in your area. I used this several times the first 2-3 years but now it just sits in the closet. I started out by using Imodium and Metamucil, etc but I felt these products made my soiling at night worse. So I stopped using them all together. I eat a early dinner and try not to snack before I go to bed. I get up about 1-3 times per night depending on what I ate to relieve gas and runny stool. And I go to the bathroom about 6 times per day. I always relieve myself when sitting on the toilet because it doesnt make any sense to try and hold it. The big thing for me is gas but I have found I can relieve it sometimes at home without using the toilet. I have never tried this any other place in fear that I might have an accident but it gives me more control over my life knowing I still can at home. I have forgotten what it is like to have a normal bowel movement and wonder sometimes what it would be like. But I am thankful to be alive and without pain. I havent experienced any pouchitis. I did see the Dr. to see if we could get a thicker stool to produce but he wanted to do a dilation process on me and I am afraid of messing with the muscle down there. You should exercise that muscle on a daily basis by squeezing for 10 seconds and letting go. This will help any control issues you are having. Currently, I am thinking about having a baby with my new husband of 3 years but I am a little scared. I have read about having babies after the surgery with normal deliveries but I am still fearful. I worry about the muscle getting torn or them having to perform an incision. I would almost rather have them do a C- Section but than I am afraid of them screwing up my J-Pouch. Any advice you all could give me would be great. If any of you are experiencing soiling at night. I would suggest watching your liquid intake especially before bed. As you should now know your large intestine held most of the bodys water and now its gone, so if you drink to much it will push everything right through you like a laxative. And if you do not drink enough you will become dehydrated. Try to find that happy medium to avoid nighttime soiling. Stay away from vegetables, especially lettuce. Lettuce is mainly water and is really not beneficial to you anyways. DO NOT DRINK APPLE JUICE. This was hard for me because, I love it but it is a natural laxative and GAS BOMB. If you need to thicken the stool, try peanut butter and bananas. I hope these tips help someone out there. I know they have helped me. My surgeries were performed in 1996.
Seattle, WA USA - Wednesday, January 14, 2004 at 01:04:34 (EST)
This is a great website! I had the j-pouch surgery in 2002 and finally have my life back. My husband & I want to start a family however I'm concerned because I have chronic pouchitis and require 1 cipro and half a flagy/day to keep my pouchitis from flaring up. Is there anyone who has gone through a pregnacy while on antibiotic's or know anyone in my situation? Any advice or comments would be extremely helpful. Best Health Sandra firstname.lastname@example.org
Sandra Steinberg <email@example.com>
ON Canada - Tuesday, January 13, 2004 at 21:42:04 (EST)
Hi. I was diagnosed with UC at age 33, managed it with meds for 7 years. I having the J-pouch surgery in one week I have never been in remision and kind of looking foward to a new life. Rick
Rick Norton <firstname.lastname@example.org>
Norco , CA USA - Friday, January 02, 2004 at 23:46:20 (EST)
I have a friend who told me about the web site. I had never heard about it until he shared the infomation with me. Thank you Derrick. I was really touched by some of the entries I read. I would like to commend each one of you for sharing the info. I also would like to wish each one of you a continued success in your recovery process you are in my prayers. God Bless
Queenie Neville <email@example.com>
Marietta, Ga USA - Sunday, December 28, 2003 at 21:17:26 (EST)
Firstly, thank you SO MUCH for the information that you have stored on this site. I'm 32 and have had UC for 12 years, totally out of control for most of that time. My gastro says "it's time" and I see the surgeon in early January. I must say I really appreciated Martin's story as I was worried about the whole surgery and pain thing. I can't imagine I'll be doing laps of the hospital within 48 hours though! My surgeon does the 2 step procedure so I'll only have 2 more ops... ever!! (at least I hope!!)
My main concern is the whole stoma and bag thing. I'm one of those wimpy women that doesn't do poo and spew so UC 'accidents' are my absolute hugest nightmare ever (up there with snakes and spiders). I thought I'd be used to it by now but I'm not and that REALLY scares me about the bag. Anyone who could give me some words of encouragement would be hugged and kissed (via email of course) til the cows come home.
I'll keep you posted on the surgery etc. Thanks so much, Jane.
NSW australia - Sunday, December 21, 2003 at 05:22:33 (EST)
Hello everyone! I was diagnosed with UC June 1999 a month after I was married. A year later I was told that it was so bad I had to have surgery. It's the best thing I ever did! I do have one question... Has anyone had problems with pregnancy after their surgery? Just would like to know what to expect when my husband and I want to start a family.
Shawna Hancock <firstname.lastname@example.org>
Norwalk, OH USA - Friday, December 19, 2003 at 23:08:38 (EST)
Bonjour, (English below) Je suis atteinte de la polypose adénomateuse familiale et jai un réservoir iléo-anal depuis 1998. À ce moment-là, le site de J-Pouch a été ma principale source de renseignements. Depuis ce temps, jai créé mon propre site Internet traitant de la polypose afin daider toutes les personnes qui sont atteintes de cette maladie génétique et dont ladresse est : http://pages.infinit.net/polypose/. Bien quil soit essentiellement francophone, jy donne aussi des références anglophones. Vous trouverez une foule de renseignements portant sur la description de la maladie et son traitement ainsi que divers autres conseils très importants. Je vous encourage à mécrire ou à laisser un commentaire dans mon Livre dor. Bienvenue sur mon site. Hi, I was diagnosed with Familial Adenomatous Polyposis in 1998 and have had a J-Pouch. Then, I found very important information on the J-Pouch Group Website. Since, I have created my own Website on polyposis in order to help everybody diagnosed with this disease. My website is at the following address: http://pages.infinit.net/polypose/. Despite it is designed to French speaking people, you will find links to English websites. There is a lot of information on this disease, its treatment and some very important advices. Moreover, I can easily read English so you can send me e-mail or add a comment in my Guestbook. Welcome on my Website.
Louise Létourneau-Poulin <email@example.com>
Cap-Rouge, Qc Canada - Thursday, December 18, 2003 at 18:41:44 (EST)
Hello. Great site. I need help to decide whether to go for the J-pouch or keep the ileostomy. I am 65 years old and fear incontinence might come back with the j-pouch. Everyone on these websites seems much younger. Any older ones out there I could speak to?
L G <firstname.lastname@example.org>
Winnipeg, Man. Canada - Monday, December 15, 2003 at 01:42:01 (EST)
sorry guys this was the only way I could get in touch w/ you as a group. I can not get registered right or logged in right....Its driving me CRAZY!! I have had some major stuff going on...Friday, Kenny,my hubby was admited to the hospital w/ congestive heart failure. We still don't know exactly what is going on but he has showed improvement. If someone reads this and can let Bill or Dave know what trouble I'm having getting into discussion I would appreciate it
Rohnert Park, Ca USA - Saturday, December 13, 2003 at 04:55:31 (EST)
Hi. I was diagnosed with UC at age 30, managed it with meds for 13 years. I had the J-pouch done Jan.3,2001 at the Cleveland Clinic and went home 5 days later. Exactly one week after the first surgery, I had emergency surgery for a twisted bowel, and a week later developed a staph infection in the incision. Recovery was a long haul, but my take-down was done three months after the initial surgery. I love the freedom that the pouch has given me. Is there any info on nutrient absorption differences for us "gutless wonders?"
Nancy Schellack <email@example.com>
Winter Springs, FL USA - Friday, December 12, 2003 at 15:48:24 (EST)
I am so happy I found this site!!! I had my j pouch done at the Cleveland Clinic in 1994 and wish I had known there was somewhere I could talk to other J-Pouchers! You know sometimes you sort of feel like a alien or the Six million dollar woman...and you are afraid to tell anyone about your situation because they might think you are different! Well I have found out I am different and think God I am! Because without this surgery I am sure I would have had a miserable existence. Even though the surgeries were very hard to go through and sometimes I wanted to give up I truly think what I have gone through has given me a new outlook on life. When I wake up in the morning I can hear the birds chirp and smell the flowers now. That is something I think that people who have been so close to death and have had the chance to have this amazing surgery can understand! Anyone who would like to email me I would love to hear from you. Take care....Debbie
Sandusky, Oh USA - Friday, December 12, 2003 at 00:25:11 (EST)
My brother who is 25 years old has chrons since he was very young.
A year ago his disease has become worse , and because of this his has become very closed in himself and will not let anyone reach him , he closes himself in his room for days and will not talk. His depression worries the whole family and we tried many time to talk him in to getting help , to join a support group but he will not listen.
I really want to help him but I dont know what to do!!!
Israel - Thursday, December 11, 2003 at 05:55:29 (EST)
Hi. I had an Ileostomy done on the 4th of November (and went home on the 7th). I am scheduled for my J-pouch on the 15 of December. So far everything has been great. Family thinks that I need to stick with the way things are. My surgery was due to an emergency caused by my UC.
Columbia, SC USA - Wednesday, December 10, 2003 at 21:50:21 (EST)
hiya. i read throught the emails and thank God I am not all alone. i just had an appointment at Cleveland Clinic, awesome place. i have exhausted all the meds available...i have uc. now they want to do surgery...i also have irritable bowel, which may cause complications??? i don't know what to do...my mom has a j pouch (1991) and is doing great! has anyone tried AMP???? God Bless!
pa USA - Tuesday, December 09, 2003 at 22:11:25 (EST)
Ich würde so gern mit euch diskutieren.aber ich spreche so wenig englisch,Ich bin 44 Jahre alt und habe den Pouch seit 8 Jahren.Es war eine falsche Diagnose. Man dachte ich hätte Colitis Ulcerosa, aber nun ist es ein Morbus Crohn.Mein Sohn und mein Bruder haben auch MC.Ich bin so allein mit meinem Pouch und habe Angst, dass der MC wiederkommt.
Ganz liebe grüße an alle von Elke
by Berlin, Germany - Saturday, December 06, 2003 at 15:26:01 (EST)
Hi, I'm 29 in Dec.03 and I am scheduled for surgery on Dec.11/03. I've been diagnosed with colorectal cancer and/ or FAP. I've opted for the j-pouch, but I must have the ileostomy first. I would love to get some input from those that have gone through it!! Thanks-Kim
Kimberly Giavarini <firstname.lastname@example.org>
Guilford, CT USA - Monday, November 24, 2003 at 22:32:05 (EST)
Interesting Site. I was the 3rd person in the US to have the J-pouch operation, back in November 1983, after a 3-year battle with UC. I've been very pleased with life overall, although I've had recurrent trouble with pouchitis. I've recently started a new treatment for it it seems to be effective.
Kip Gardner <email@example.com>
North Canton, OH USA - Thursday, November 20, 2003 at 17:17:39 (EST)
I had a total colectomy with a temporary ileostomy in June of 2003- went back at the end of August to have my ileostomy knockdown and started using the j-pouch. I have had no major problems since but I would love to hear from others who have had the same procedure done.
Massena , New York USA - Thursday, November 20, 2003 at 10:00:20 (EST)
I've had a j pouch for 5 years now and have developed fistulas. Does this mean I will end up loosing my pouch, and having to have a permanant ileostomy?
Lee on solent, HANTS ENGLAND - Sunday, November 16, 2003 at 12:08:59 (EST)
waiting for second surgery!
peterborough, canada - Thursday, November 13, 2003 at 11:49:04 (EST)
I have mild to moderate UC for about 9 years. During that period, there was only one period of remision that lasted about 2 years. The last two years was very bad even though I have never stopped taking 6MP and various ASA drugs as well as periodic predinisone. These drug have some effect, they reduce my stool to 3-6 times a day but never give me complete remision. I'm now thinking about the surgery. I just wonder if anyone out there has done surgery in the Denver area or I should go to one of these places like the Cleveland Clinic? I am trying to find as much info as possible on the subject. I'll definitely read more here. Thanks.
Ming Zhou <firstname.lastname@example.org>
Fort Collins, CO USA - Thursday, November 13, 2003 at 00:30:14 (EST)
IM HALFWAY THERE,I NOW HAVE THE OSTOMY BAG
LAKEWOOD, CA USA - Monday, November 10, 2003 at 23:41:23 (EST)
As a 51 year young person with a Kock Pouch Ileostomy which has been functioning A-one perfect for almost 30 years, I am glad to find others to share questions/solutions with. I look forward to being of help to anyone I can. All questions welcome!!!
Jan Marcott <email@example.com>
Effingham, IL USA - Monday, November 10, 2003 at 23:24:54 (EST)
I browse the site from time to time to see how I can help - Im 28 yrs old, male and had UC for 8 yrs. I had surgery and final takedown 9/2001. Had some difficulty in the beginning but now I am living a life I once gave up on. I didnt know jpouch surgery would give me my life back and then some. Drop me an email with any questions. Life is Great now with the jpouch!
Tom Setzer <firstname.lastname@example.org>
New Castle, DE USA - Saturday, November 08, 2003 at 02:24:03 (EST)
I've had a pouch for over 12 years now and am wondering if anyone knows whether it deteriorates over time?
Toronto, ON Canada - Tuesday, November 04, 2003 at 11:51:47 (EST)
HI, I'm Jo and I'm and irish pouchie,delighted to find this website and while on one hand it's not great, on the other it's nice to know there's loads more pouchies out there.I have my pouch now for 11 years and wouldn't swap it for a colon again.
Meath, Ireland - Monday, November 03, 2003 at 09:10:18 (EST)
I appreciate having this website as a resource. My son, age 24, will be having this J-Pouch surgery (Restorative Procto Colectomy) on November 10, 2003 at Mount Sinai Hospital in NYC, so we are at the beginning of this journey. His Ulcerative colitis was just not being controlled. The surgeon is hopeful that it can be done in one stage. We shall see...
USA - Sunday, November 02, 2003 at 12:28:33 (EST)
THANKS TO THE PRESIDENT OF THE SUPPORT GROUP OF CHRONS AND U.C., ABIGAIL DONES,PerlaPR07@aol.com , I DECIDED TO LOOK ON THE WEB FOR PEOPLE WITH ANY OF THESE TWO CONDITIONS. PLEASES, FEEL FREE TO CONTACT US, PABLO. TEL (787)864-8303
PROF. PABLO FERNANDEZ <email@example.com>
GUAYAMA, PR USA - Thursday, October 30, 2003 at 13:15:47 (EST)
This is a great website, I wish I had this at my disposal when I had to make my decision for surgery. Keep up the good work !!!
Scott McClory <firstname.lastname@example.org>
QUINCY, mA USA - Wednesday, October 29, 2003 at 23:15:14 (EST)
my son is a college freshman who had his first j pouch surgery in july and due to have his 2nd over christmas break. i would like to know if anyone has had a problem of excessive salivating at times after their 1st surgery. it didn't happen until a month or so ago.problem has doctor baffled. good luck to all and thanks to whomever responds.
marietta, ga USA - Monday, October 27, 2003 at 20:15:41 (EST)
I'm Steve and live in manchester UK and need to decide, withing the next 4 weeks or so, whether to have a full ileostomy or elect to have a reversible pouch operation. Opinion amongst the medical team seems divided. I would prefer to go for apouch but would like to know what you guys who know about these things think. I know people can't tell me what is best for me but I would like any advice that you could give please. BTW I'm 50 years old and have have UC on and off, for 6 years (on for last 3 years)
Many thanks and regards
P.S. I have found this site invaluable
Steve McDonough <email@example.com>
Manchester, - Sunday, October 26, 2003 at 19:28:44 (EST)
Hello all! I've just discovered this sight today and am so inspired by all of your testimonies! Your courage and determination throughout your disease has been exemplary! My 17 year old daughter was diagnosed with mild UC at the age of 9, but has only had a period of remission for about 2 years during middle school. Now a senior in high school, she has been on Prednisone for almost 3 years now. We tried the 6MP, but it ended up making her much sicker. We switched to Asacol which gave her some improvements, but we cannot seem to get her below 10 mg of Prednisone without a flare. The doctor thinks she is a candidate for surgery, and I'm beginning to think so myself. But with college next fall, and all the demands of her senior year, we're having a tough time deciding when would be the proper time. I would love to get feedback from some of you if you have the time. I would especially like to hear from any teenagers out there who can relate to her story, and tell me how you got through it. Thank you for giving me the opportunity to write to you. I think this will really help us. Love and Peace to all of you. :)
Lisa Loebs <firstname.lastname@example.org>
Rocklin, CA USA - Sunday, October 26, 2003 at 18:23:12 (EST)
my name is russel and i am 21 years old. when i was 19, i was diagnosed with a severe case of UC and within 4 months had to have surgery. i lost over 50 lbs, like most of you probably, and have had uncountable blood transfussions. to make a long story short, a little over a year ago (sept. 4, 2001) i had my second surgery; connecting my j-pouch. praise God, i am here today to talk about it. i just moved to boise, id to go to school to become a pastor (boise bible college). its pretty scarry being away from home for the first time and away from all the security of my parents taking care of me while i was sick. but like i said, praise God. He's taking care of me.
Russell Clum <email@example.com>
Boise, ID USA - Tuesday, October 21, 2003 at 00:41:30 (EDT)
On August 11th 2003 I had the first part of the J-pouch
surgery. Part 2 is going to be soon. Im fify three and after 8 years of having uc they found displayia and told me that they sugest I have my colon removed. Finding this site has made things a little easier for me and not so scared of the next surgery. Would appreciate any information or good word I can get. Thanks Mona
Mona McCall <firstname.lastname@example.org>
Sun City, CA USA - Saturday, October 18, 2003 at 03:04:59 (EDT)
My husband recently has had the second surgery and has started experiencing some difficulties with his pouch. The web site has a lot of great info and we will be back to chat. Thanks Rebecca
Rebecca Holder <email@example.com>
Signal Mtn, TN USA - Monday, October 13, 2003 at 21:58:50 (EDT)
I had mild UC for 15 years. In early August, I had my first serious flare. I have lost over 2 months of my normal life to it. Apparently, I am prednisone resistant + cannot take Immuran. So, it's surgery for me. I am terrified and need words of wisdom!
Seattle, WA USA - Saturday, October 11, 2003 at 20:56:01 (EDT)
Hello! I have been diagosed with FAP after finding 30-40 polyps- scheduled to have the J-Pouch surgery in Nov 03. Please feel free to e-mail me if you have advice or want to chat. I am a 37 year old woman with husband and 10 year old daughter.
MPLS, mn USA - Saturday, October 11, 2003 at 18:13:54 (EDT)
UC>15yrs. J-pouch 7 years after. Anxiety manifested itself from my colon to my head (nut dr vs butt dr??). New to this. Thought I was all alone. Husband >24 yrs (bless his heart) over in Kuwait. Lonely, didn't know anyone else was post-op and proud (shall we invest in TP stock?). E-mail when you can and for you newcomers, it is better than all the other pain, suffering, etc. But I sure wish I knew about this site soooooo long ago. CCF.ORG fine pre-op but not much follow-up for those of us that committed to the mini-colon. Take care all, just nice to reach out even when it's late and there is no-one there at the time because I know you'll be there later. Peace out. J.
Summerville, SC USA - Thursday, October 02, 2003 at 02:49:54 (EDT)
I am a school administrator who suffered with UC for a year before I was reffered to Mayo Clinic Rochester, MN to have the procedure done. They did taake my entire colon and performed the J pouch surgery. It has been 2 years since the procedure and i am so thankful i brought myself to admit that this was the only way to go,and since then i have been able to live a normal life with my wife and two kids. I also can do my job to the best of my ability without being tired and in the restroom. Please feel free to contact me if your to the point of not knowing what to do with the disease.
Richard Sspencer <firstname.lastname@example.org>
Burlingame, Ks USA - Tuesday, September 23, 2003 at 22:08:44 (EDT)
Great site which I have looked at several times in the last two years. I'm having j-pouch sugery October 7th. Just wondering if I will be able to do sports like cross country ski marathons or will I have problems?
David Lewis <email@example.com>
Ottawa, ON Canada - Saturday, September 20, 2003 at 02:52:16 (EDT)
I had UC since 1995, underwent total colectomy, with connstruction of J pouch and temporary ileostomy in March 2001 with reversal of ileostomy and connection of j pouch in Sept 2001. I have never looked back. Making the decision to have the surgery was difficult but Mae West helped out there it went something likethis... when you reach a crossroads try the path you haven't tried before...I was relatively well at the time which helps ...it is pretty huge surgery...so to give yourself the best chance of an uncomplicated recovery aim to be at your fittest prior to surgery. After the connection of the J pouch make sure you have a tube of Drapolene cream and Johnson and Johnson baby wipes!
Jean Mc Cormack <firstname.lastname@example.org>
San Diego, CA USA - Thursday, September 18, 2003 at 16:20:34 (EDT)
I had my surgeries 8 years ago this coming Dec. 2003. I wish more people would be screened for UC. I am doing great and have never regretted having the surgeries. I had am Uncle that was 6 months younger than me that had UC and did not take care of himself. He passed away 2 years ago on April 1 of 2001. I sure miss him. Please support anyone that you know that is thinking about having this surgery. It is a pretty scarcy thing, but you can survive that surgery and your chances with cancer are not so great.
Kristi Glenn <email@example.com>
Caldwell, ID USA - Wednesday, September 17, 2003 at 11:57:05 (EDT)
I had this surgery 8 years ago this coming December and I am doing very well. I am leading a normal happy life. My wish is that more people would be screened for the disease. I had an Uncle that was 6 months younger than me that died from the disease after I had gone through my surgeries. I sure miss him.
Kristi Glenn <firstname.lastname@example.org>
Caldwell, ID USA - Wednesday, September 17, 2003 at 11:44:49 (EDT)
A good friend of mine is about to have the op for a j pouch
Any advise as to helping him with support. He's 27 years old and as I'm sure you all know how he must feel i'ld like to know what myself and his friends can do to make things and best we can for him,
Scot robin <email@example.com>
Adelaide, s.a. Australia - Tuesday, September 16, 2003 at 23:50:13 (EDT)
Im 14 years old and i got colits when i was 7..now 7 years later i got crohns...so ive been threw kinda alot, and it isnt fun but i guess u just have ta no how to deal with it all...well email me sometime...Bye
Mi USA - Tuesday, September 16, 2003 at 21:12:08 (EDT)
I underwent the J pouch surgery in 1999, and I never look back. I wasn't scared as I was williong to do anything to get away from the flare ups of my UC.
Windsor, NS Canada - Sunday, August 24, 2003 at 19:16:07 (EDT)
Hello! I have been chatting on this site for some time now and though I haven't been on in awhile, I would like to just say that this is one of the most wonderful sites for people like me with UC or Crohns. I have had UC for about 3 yrs and though I have not yet had surgery, I am going to very soon. The thought of it is just a bit scary, considering the last time I had any kind of surgery, I was getting my tonsles out. Haha... anyway... I am only 13 yrs old, and many people think me to be too young to be going through anything like this, but I think I'm just the right age. Any younger maybe, but this has really shaped who I am as a person I think and so I feel blessed to have been able to go through this and meet so many wonderful people along the way. Thank you for making such a marvelous site and for bringing people with IBD together. You have made UC feel like something that I can actually live with. Good bye, and may your lives not be so much of a pain in the butt. ^.~
Sarah G. (a.k.a. firesstar) <firstname.lastname@example.org>
Rutherfordton, NC USA - Wednesday, July 30, 2003 at 21:20:57 (EDT)
I had this surgery in '95 (coming up on eight years ago) and it's the very BEST thing that every happened to me! I got my life back. It was certainly very scary but the alternatives weren't acceptable - being so sick and on so many meds. I had an incredible doctor at the Medical College of Virginia in Richmond and he was absolutely terrific!
Beth Howell <email@example.com>
Hampton, VA USA - Wednesday, July 30, 2003 at 13:01:20 (EDT)
Hi, my names Liz I.ve been searching for a site that relates to Chrons disease to find out more about the disease and to just keep informed about any new treatments etc. I have had chrons disease since i was 12, i'm now 22 and i've been lucky that i'm not as affected as some people. I'm feeling motivated and inspired to actively do something to raise some funds to contribute to any research into chrons disease, so any information about any contacts any of you may have it will be appreciated. Any info that you may have please firstname.lastname@example.org. Well, thats it! Hope you are all doing ok out there. Keep well.
Wales-Uk, USA - Wednesday, July 30, 2003 at 09:55:40 (EDT)
I've had ulcerative colitis for 4 yrs. I've recently had surgery. July 7,2003 I think I did the right thing. I did the one time surgery, and it was a success.
Kelvin Mitchell <email@example.com>
Monetta, SC USA - Wednesday, July 30, 2003 at 06:05:30 (EDT)
I have had my J-Pouch for over 17 years and have been very, very please with my decision to have it done.
Joyce Pistone <firstname.lastname@example.org>
Las Vegas, NV USA - Sunday, July 27, 2003 at 00:43:56 (EDT)
just learned I could have pernicious anemia, I would like to know what some of the symptons would be.
kay mayer <email@example.com>
USA - Friday, July 25, 2003 at 01:37:22 (EDT)
I entered this ad well over a year ago and would like to re-list it with my current email :: i've been searching crohns sites trying to find a lost love.she also has crohns.she was diagnosed in calgary about 3 years ago and although she and i were supposed to be married she left to be with her family after getting the news about her illness.it was alot for both of us to deal with.i've come back to new brunswick to find her and have been here for a little over a year.i found her parents phone # but i think they blame me for her illness.i was hoping that mabey you may have seen her at a function or talked to her at a site.her name is jami mcphee and i believe she lives in penobsquis nb.i love her and always will no matter what crohns does to her body,i know that what's in her heart will always remain.!thanks for your time. john
john williams <firstname.lastname@example.org>
moncton, nb canada - Thursday, July 24, 2003 at 23:14:29 (EDT)
I HAD MY FINAL SURGERY IN MARCH OF 2001. I AM 28 YEARS OLD AND SOMETIMES HAVE A HARD TIME WITH MY J POUCH BUT I AM EXTREMELY HAPPY NOT TO HAVE AN ILEOSTOMY ANYMORE! I WOULD LOVE TO TALK TO OTHERS WHO CAN RELATE. I'M STARTING TO FELL A LITTLE ISOLATED.
Katie Nicholson <Katie@windsorknolls.com>
Ijamsville, Md USA - Wednesday, July 23, 2003 at 22:34:00 (EDT)
Thanks for visiting. Please sign in and enjoy our website.
Bill Johnson <email@example.com>
Hatboro, PA USA - Tuesday, July 22, 2003 at 22:54:08 (EDT)
Scripts and Guestbook can be found at