Buddy List

Thank you for visiting our pages.

Please send an email to buddylist@j-pouch.org if you would like to be on our BUDDY LIST.This is a list of volunteers who are willing to be a contact person for patients who need help, support, advice, a hospital visit or phone call. We will list your Name (first name or nickname), e-mail address, City and State.
When you are contacted for help, you can correspond with the patient by e-mail and decide if you want further contact by phone or in person.

Please include the following info:
1. NAME:
2. CITY:
3. STATE:
4. BRIEF COMMENTS ABOUT YOUR ILLNESS AND/OR SURGERY


Hello,My name is Synia and my daughters name is Angela.  Angela is 20 years old and was diagnosed with UC on August 9th, 2006.  On August 14th she had surgery (1 of 3) to remove her colon, she was in the hospital until August 30th and sent home with a gwound vach. She is in need of someone her age to talk to her.  She is again in the hospital (admitted on September 24th) with some problems related to the perforation of her colon. If there is anyone out there that would please talk to her I would greatly appreciate it. Also if anyone needs to talk to me I would be willing to talk to or try to help out anyway.
We are from Billings, MT, our e-mail addresses are:
Angela: <puddnpie1@juno.com>
Or myself: iamsinnysue@yahoo.com < iamsinnysue@yahoo.com>

I had the J-Pouch surgery a little over a year ago and I am doing GREAT! I was sick for years and mis-diagnosed by many physicians until I met with the doctors at UNC-CH. I was on Prednisone for more than 7 years and finally I had to get off it but where it has horrible reactions on most people, I tolerated it too well. Anyway, I had to get off it because of what the later problems it could cause. I am willing to talk about my problems, toll on family or surgery with anyone.
Joshua <jnaftolin@ilsnational.com>
Raleigh, North Carolina 00/26/06
I had my j pouch done is 1985 at Mayo Clinic when I was 19. I have had difficulties with adhesions, but overall, I would say the operation is great. It is much better than living with UC! I would be happy to talk with anyone about their j pouch.
Lorie <Lorie@twoelks.com>
Kansas City, Missouri 09/26/06
Nassim Mir Mozaffari. I was diagnoised with UC at age 21 took 15 pills a day for 6 years was in remation only for one summer. Had surgery in Lahey clinic in Burlington, MA in 91. Have had blockages through out the years. The first 8 years was pretty good then was having blockages every month ending up in the emergency room -- blockage would be released on its own ended doing Macrobiotic which help my blockage for 3 years. The diet is strict and time consuming. I slacked off. I was ok had some blockage. Drinking ginger tea, putting hot water bottles on my stomach and my lower back and sometimes Italian ice helped to release my blockage!! For the past year I have been having lots of gas when ever I eat fruits and veggis. and if I have any meat I my stool becomes very loose and mukis. At thistime  I a just eating white rice and yogurt which helps with the stool and the gas. I am going to check if I have pouchitis some thing I just recently heard about. Does anyone else share these difficulties? I would like to hear about any natural remedies or your experience in getting better.
Peace,
Nassim <nassim99@hotmail.com>
Bath, OH, 09/25/06
I am a patient since 1993 of the j-pouch surgery.  I will have to admit that it is a relief compared to the pain which I experienced for 16 to 20 years prior to surgery.  My surgery was done at the Cleveland Clinic Ohio and I had the best of surgeons, Dr. Victor Fazio.  They have a first rate department there.  I live in North Carolina and had to do my follow up biopsies at Duke Clinic.  I developed a lesion in my anal area and it was suggested at Duke by the surgeon there that the only alternative was to have my rectum closed and have an outside appliance.  After getting two other opinions they sent me back to Ohio to the Cleveland Clinic and they discovered with a colonoscopy that I had ulcers in my pouch and now have irritable pouch syndrome.  I have been on Cipro 500 mg. and xifaxan and tindamax to rid myself of these ulcers.  This is all fine but I have been looking for an alternative to antibotics for years and years to keep chronic pouchitis at bay.  My husband heard a program on the radio that said that crohn's and UC patients should try probiotic VSL3 as a therapy.  I have not been able to obtain that product but was able to go to a vitamin store and obtain probiotics covered in enteric coating so it will survive the stomach acids and get to the intestines I have left.  I have been off the antibiotics now for about 5 weeks and with success so far.  I do have to use B&O suppositores to slow things down and this has been a blessing also.  Suppositories are a prescription as they are barium and opium.  I am much happier with this therapy I have discovered and I was afraid since I am getting early osteoperosis that it may be from the antibiotics.  AT any rate I am happier!
Please write if anyone has other questions.  I consider myself a seasoned pouchitis veteran.
Sherri Fox   <SAFOX9190@aol.com>   
North Carolina 09/19/06      

I had my colon totally removed in Jan. of 2003 after suffering from UC for about five years. I had a flare-up that I could not recover from. In November of that year I decided to have the JPouch procedure with the take-down done in Feb. of 2004. I have no regrets. I hated the ileostomy and dealing with the bags and constant irritation to the skin from the various attachments and adhesives needed.  It has been about 2 1/2 years since my J Pouch and I am extremely grateful to my surgeon Judith Trudel from Minneaopolis Colon and Rectal Surgery Assoc. The only real challenge I have is at times extreme pain from the digestive enzymes of whatever I may have eaten. I use Lomotil to manage the frequency of BMs and Lidocaine for the pain. Any wisdom out there on how to manage diet and occaisional pain for the BM? It is excrucating at times!!!
Steven Liberda <sliberda@msn.com>
Stillwater, MN 09/16/06
Had UC for 10 years, 2 step surgeries starting June 2006. Have had pouchitis several times, so I know what hell is like.
I know now how to avoid pouchitis and would be willing to talk with people who are having troubles or scared.
George E. Hutchby, DC, MS <ghutchby@winfinity.com>
Florence, Oregon 09/13/06
I'm Doris and my stoma is Stewart,
I'm 49, diagnosed with ulcerative colitis at 29, subtotal colectomy 18 years aga, low grade displasia showed up this year so I've had a tolal colectomy with temporary ileostomy and a j-pouch on August 10, 2006.  I am alergic to the stoma adhesive paste (from Holister and Coloplast)  Does anyone know of another paste? Also, I have had to have IV fluids daily due to dehydration.  Will this get better?  Thanks,
Doris <hassengers@bellsouth.net> 09/08/06
Had UC for 3 yrs. All meds stopped working and had 3 stage surgery. Had j pouch on Feb 28 2006. Had reversal on June 27 2006. !st month i almost wished i had the bag back, and had to have an easy diet.It was quite hellish at times but YOU MUST stay positive- there's a lot to be said about mind power(for me anyway) I am 2 and a half months out & I can eat whatever I want & visit the bathroom about 8-10 a day. I feel so grateful at this 2nd chance in life...
CHARLYN DILORENZO <acrobat919@verizon.net> 09/03/06
My name is Sheyanne. I live in Romeoville, Illinois
I have been living with a J pouch for 22 years. It blows my mind to find out that this surgery is so common now. I first found out about living with this after having had surgery for a toxic mega colon and acute onset of UC back in late 1984. I was told that I was the very first female and the 13th person to have the reversal for an ileostomy.  And until two weeks ago I called it my ileo-anal pull-through. Wow! Have things changed for me. I love the web sight. Just to find out there are others like me. I have had many surgeries for a wide range of things that go with having UC. I have so many questions for every one I don’t even know where to start. I would love to have some buddies to talk to that can relate to all the same things I am going through. And if I can help in the process it would be great.
The Lockhart's <Adriennel54@comcast.com>
Romeoville, Illinois 09/03/06
My name is Steven, I'm a 34 year old male. I just got a restorative protocolectomy 3 weeks ago and I currently have an ileostomy , I would love to speak to a buddy who has had the two part surgery and who currently has a J pouch. I live in westchester county New York and I'm also veryclose to NYC. Thanks
Steven Gordon <stevengordon1@mac.com>
westchester county, New York 08/30/06
917-575-0503
Was diagnosed with UC when I was 26. Then they said it was Crohns after a total colectomy was done and ulcerated again. I have had more than 35 surgeries in the past 18 years and just had another last month because of scar tissue. I have an iliostomy and it was suffocated by scar tissue so had to be redone. I have been having rectal pain on and off for a while but it usually seems to subside. However, lately, it seems to be every day and get much worse. Since I still have my rectum after the iliostomy, I wondered if this was a common problem or if something could be wrong. Has anyone else had this problem? I could really use some help. Thank you.
Christine McKeon <1stkrtz@pcisys.net>
Colorado Springs, Colorado 08/26/06
I am a retired Family Doctor. I had UC from aged 40 to 61. In 1966 I had a J Pouch and temporary ileostomy. My resources are acquired through the treatment and advice I have had and given to patients.
Alan Byron <alan-byron@hotmail.co.uk> 08/21/06
I have had my J-pouch since 1998.  I have been mostly problem fee until now- I have pouchitis for the first time and am on anti bioticsc.  I would be very willing to talk to anyone.  I live in Ottawa, Ontario.
stowaij <stowaij@rogers.com> 08/17/06

I was diagnosed with multiple polyps in my lower intestine. i have to go to cleveland clinic and have my lower intestines removed and a J-pouch for 3 months. then they will take the J-pouch out. all of htis will be done by laparoscopy. i am so worried and scared about the operation, what happens afterwards, ifi can deal with the illiostomy for 3 month. i am 23.
steve schwartz <sms8387@sssnet.com>
massillon, ohio 08/14/06
Im willing to talk through or help out people with their concerns to the
best of my ability, ive been through a fair bit so have gained quite a bit
of knowledge regarding colitus treatments and j pouch construction and
functions..thanks <nevebrown@msn.com> 07/29/06
I had 3 stage j-pouch surgery beginning in October 2003 due to severe UC I had for about 8 years.  My surgeries went wonderfully, I had them done with Dr. Jacobson at Baylor Medical Center in Dallas.  The only complication I had was in Feb 2004, I had to have emergency surgery due to an intestinal blockage from adhesions.  I have since fully recovered and am amazed at the change in my quality of life.  I had our fourth child in 12/05 and it was the first time that I did not have a flare up after a pregnancy. Paula Henderson <paula@oneservant2go.com>
College Station, TX 07/24/06

My name is Jennifer. I am 25 years old. I was diagnosed with ulcerative colitis in April 1998. I was tried on prednisone for about two weeks to no avail. I ended up having emergency surgery to remove my colon and create a temporary ileostomy. I was terrified to have this "colon thing" on the outside of my abdomen. Not to mention being gross looking, it was rather uncomfortable. But, I knew I would have it reversed eventually. After about six months with the temp ileo I went in for a j-pouch test, where they fill your j-pouch with liquid to make sure there are no leaks. There was a leak, so therefore I had to wait another six months. After six months I went back for a j-pouch test and it didn't show any leaks. I went in for the reversal. I was so happy I was finally going to be rid of that ileo I had been out of the hospital for about two days when I suddenly felt a God-awful pain in my left lower abdomen. I was rushed to the ER and they found a leak in my j-pouch I had to have it re-reversed AGH But, to make a long story short, I eventually got it reversed and have had absolutely NO problems since then. I am SO glad I had the surgery (even though there were complications). It is the best thing I ever did. No more taking prednisone, no more GI disturbances, nothing. Just back to living my life and loving it. I am here if you ever have any questions. I am not a physician, but I have actually been through it and came out smiling on the other side. I'd be glad to help in any way I can.
Jennifer Fuller <jennfuller30533@yahoo.com>
Cleveland, Georgia 07/24/06

Hi there, I would like to be added to the j-pouch buddy list. I had my surgery in August 1984 at the Mayo Clinic under Drs. Pemberton and Bairt.I am 56 years old and after 20 years of having a pouch, I am still very satisfied with my surgery. I had the ulcerative colitis disease from age 16-34.
Cheers,
Don E. Wolford <don.e.wolford@earthlink.net>
Barrington, Il. 60010 07/23/06
Hello,
I've had a j-pouch since Sept 1, 1999. I had UC for years with little problems, and then a bad attack of it beginning in June 1999, and was allergic to all the drugs that should have helped. They just made it worse, and with so much infection and misery, had no choice but to have the surgery just 3 months later. Miracle was we had just moved 30 miles from one of the few specialists at that time, Craig Johnson in Tulsa, Oklahoma.
I have had some problems with infection and some adhesions, but I would not trade to get my old colon back!  
I would like to talk to anyone who is considering this surgery. Especially anyone in Oklahoma.
Please don't settle for any type of ostomy unless that is your only option. If there's not a surgeon in your area who does it, it would be worth it to you later on to travel to the nearest one.  I know there are a few surgeons locally who have actually asked my advice about whether to offer their patients the j-pouch, who went ahead and did the surgery, but it was new to them, so who knows how it worked?  Find someone who specializes in colorectal surgery, or at least someone who has done a lot of j-pouch surgeries. Good luck, and God bless,
Cindy   <racin@netzero.net>
Lawton, Oklahoma 07/21/06
I had the J pouch done April 19th, 2004, for (that can’t figure out which) muir-torre or FAPS. The only symptoms I had was sebaceous hypoplazia (not sure of the spelling), lesions on my face. In short I had 50+ polyps and with my family’s reputation of colon cancer, it was recommended it come out. I feel as good as I ever did prior to the surgery. I eat whatever I want. Of course I go more often, and depending on what I eat will increase (or decrease) this. I feel I had the best doctors perform this type of surgery. They did the J pouch on a past NFL football player, Rolf Benershka (not sure of his last name’s spelling). He was a kicker for the Chargers, for you old enough to remember. But I met with other surgeons, and after leaving their offices I didn’t feel nearly as comfortable as I did when I left the doctor’s office who ended up operating on me. ANYONE needing the J pouch procedure, feel free to contact me. You won’t be disappointed. I met with doctors who came highly recommended, and wouldn’t let them touch my dog, if she needed it (not saying they’re not good at other things)…..here’s my info:
John Cascio,<jcascio@rti-dfd.com> or <neiipeart@aol.com>
Stamford, CT USA July 18, 2006
j pouch surgery two months ago trying to learn how to prevent a flair up of pouchitis
chuck prichard <decimas@aol.com>
pueblo, co USA - Saturday, May 27, 2006 at 21:52:29 (PDT)
I had Ulcerative Colitis. I had the total colectomy with the J-pouch. I had a bowel obstruction after the reversal. I had to under go surgery for the bowel obstruction. Currently I'm fighting with what my doctor believes to be chronic pouchitis.
Justin Shaw <justin.shaw@insightbb.com>
louisville, ky USA - Saturday, May 27, 2006 at 18:22:18 (PDT)
I am 23 years old. I had UC for 2 years, and I was unable to do any of the activities I had once loved. I was always sick, couldn't even spend time with friends or my fiance. I had the first stage of the J-Pouch surgery in March of 2006 and 6 weeks later I had the second phase.
Megan <mltom82@msn.com>
North Andover, MA USA - Thursday, May 04, 2006 at 14:02:17 (PDT)
I have Familial Polyposis. I was diagnosed at age 11 and am now 22. Will be 23 in July. Anything else anyone wants to know anything else just email me and ask!
Trinity <xdevynebeauty@aol.com>
Lakewood, Oh USA - Tuesday, May 02, 2006 at 16:57:30 (PDT)
Contracted Ulcerative Colitius had 3 surgries already and Im waiting for the doctor to finish the last surgery t complete the reversal. I've been through hell. A J-Pouch was constructed, now I'm waiting to be normal again. Can someone tell me what to expect.
Chris Jones <cgtopcops@hargray.com>
Bluffton, SC USA - Monday, May 01, 2006 at 18:12:26 (PDT)
I had a complete colectomy eight years ago, only three months after my sweet baby boy was born. The j-pouch has allowed me to move toward a more normal life. As each day, month, year passes, I learn to value what this procedure has added to my life. Ulcerative Colitis nearly killed me. Today, I am alive and thriving. I know how it feels to be afraid and to feel like a "non-person" because of the surgery. I know what it's like to feel weak and tired and to wonder if I'll ever feel normal again. I'm a wife, a mother and am leading a very full life. I can listen if you need someone who will understand what you're going through.
Liz <liznorling@cox.net>
Peoria, Az USA - Sunday, April 30, 2006 at 22:25:19 (PDT)
I had ulcerative colitis diognosed 19 years ago. I had my first j pouch done 15 years ago and again 2 years ago and still suffer every day from pouchitis. I have tried a lot of meds and also had a nuerostimulator inserted 6 months ago with no help. I have been searching the net and read about lots of meds I have not tried eg Ciproxin Levaquin Cyclosporine 5ASA. I thought I had come to a time in my life were I had to decide to have permanant iliestomy, very hard discision.Looking for some advice or someone to talk to.
Wendy <randerson8@optusnet.com.au>
Sydney, NSW AUSTRALIA - Thursday, April 27, 2006 at 05:44:32 (PDT)
I was diagnosed with UC at age 10, 32 years ago - I had a J pouch in spring of 98, with the ileostomy reversed that summer - subsequent to that I have undergone two complete mucosectomy's (6 t0tal surgeries) and I am still in near daily pain - with a chronic anal fissure that bleeds on a daily basis - take lots of meds but still make 8-12 trips to the bathroom per day and also suffer with ever worsening arthritis - it seems as if this is as good as it will get for me - the only positive is that I have thus far avoided a permanent ostomy - although it was recommended to me twice when dysplasia was found in the rectal cuff (hence the mucosectomy's) -- anyone else with had any similar experiences?
Daniel Wanderman <drw10471@yahoo.com>
Winston-Salen, NC USA - Wednesday, April 26, 2006 at 16:13:50 (PDT)
I had UC for about 6 months, then developed toxic megacolon. I had thje j-pouch made in three phases. Since then i ahve undergone two more surgeries, to get me better.
Annah H. Hines <abanana1313@yahoo.com>
Bedford, OH USA - Wednesday, April 26, 2006 at 12:54:05 (PDT)
Colonectomey and take down in '99. New definition of "normal" an acceptable adjustment, especially compared to the alternative.
Jim Brant <jbrant@triad.rr.com>
Greensboro, NC USA - Tuesday, April 25, 2006 at 19:24:23 (PDT)
i am having problems with adhesions at the anastamosis sight and also getting my pouch to empty, especially getting flatus out. i am also curiouse if any one has any suggestions for adequate diet, i am so limited in what i can eat, and what is actually beneficial to me to eat. help! thanks
julie hix <hixsieben@msn.com>
clarkston, wa USA - Tuesday, April 25, 2006 at 17:50:44 (PDT)
most respectfuly sir/mam i am invalve in very troble because i am a ileostomy pationt i need your sincearly help theres doctors done many time my surgeory but every time he failed so i am not satisfy for there ntreatment i done more treatment in abroad so you can help me for my treatment in abroab please help me for save my life i submit you a some detail of my madicaly histary so please read my histary and possible to save my life thanks...((intestinal obstruction Dec 2001,ileostomy was performed.hetook ATT for 1 year.closure of ileostomy wasperformed on March 2002.there was leakage of anastomosisand reversal of ileostomy was done.second attempt of closure of ileostomy was done on August 2004.again leakage of an anastomosis and he remained in ICU.reversal of ileostomy was performed.he still has functional double barrel ileostomy.)) sir/mam please you possible to treatment ,guide me and save my life i hope you help me better so i wait your mail my mail address is this((khurram3214052140@yahoo.com)))thanks again ..a pationt...
khurram baig <jhurram3214052140>
lahore, pakistan pakistan - Tuesday, April 25, 2006 at 04:57:26 (PDT)
32 year old woman with 2 toddlers & lovely husband, suffered with uc for 1 year - 1 severe attack july 05 - hospitalised for 3 weeks resulting in total colectomy aug 05. Illeostomy bag not wellcome but terrified of further surgery - due 24th april
trina merry <burrowtrina@aol.com>
banbury, oxon england - Tuesday, March 21, 2006 at 16:24:26 (PST)
HAD J POUCH SURGERY AND WANT TO HAVE A BABY AND NOT SURE IF I CAN.
DEE COLLINS <THATSHOT007@MSN.COM>
CORONA, CA USA - Tuesday, March 21, 2006 at 12:46:55 (PST)
Had uc for 32 years. In 04/2002 I had the j-pouch procedure done and the reversal 08/2002. I've battled chronic pouchitis and went through a anal fissure last summer. I am finally healing from that. I know that this too will pass and better days are ahead
Clydene Davis <clydenedavis@skytex.net>
Leonard, Tx USA - Sunday, March 19, 2006 at 16:46:47 (PST)
i had an illeostomy for 4 years and now i have a j pouch and i'm very scared that i made the wrong choice.
helen jackowiak <hjackowiak11@juno.com>
nolanville, tx USA - Saturday, March 18, 2006 at 10:22:15 (PST)
I had ulcerative colitis for 8 years, and had an ileostomy for five years. One year ago I had my ileostomy reversed, since then I have not been feeling very well and have had several partial obstructions. I was just looking for someone to talk with who is going through or went through the same experience.
Kristen <netsirk58@aol.com>
Westchester, NY USA - Saturday, March 18, 2006 at 10:02:28 (PST)
I was diagnosed with UC at age 22. Was hospitalized 2 months with no success at controlling it medically. Had emergency surgery for temp ileostomy and J pouch with the take down 3 months later. Now, 13 years later, I have gotten married, had children, got a degree, have a full time job and am very active. I have had no complications and no regrets! When I was sick, strangers came out of the woodwork to talk to me about their experiences and it made all the difference in the world to me. I would like the chance to do the same for someone else.
Marlene Riffenburg <mrsriff@earthlink.net>
Redford, MI 48239 - Friday, March 17, 2006 at 13:29:37 (PST)
Had the second surgery already. Very weak and have had 3 bowel obstructions. has anyone else experienced the obstructions. I still have an ileostomy for three more months. Will I be happy once I'm all connected????
Theresa <t.olsen57@sbcglobal.net>
Medinah, Il USA - Thursday, March 16, 2006 at 17:50:25 (PST)
I have an 11 yr. old daughter about to have the j pourch surgery after trying all other methods of meds. with no success. We have been referred to Ann Arbor to a surgeon named Dr. Hirschl...any comments?
Marcia <m.mulder@nwhealth.org>
Harbor Springs, MI USA - Thursday, March 16, 2006 at 07:55:58 (PST)
don't have a j-pouch, but despirately need help. i am 8 weeks postop following total colectomy with ileorectalanastomsis as a result of colonic inertia. while recovering from the surgery i developed a sever ileus which not only made me sicker, but delayed my recovery period resulting in a 2 week hosptal stay. since i have been home i have had a very slow recovery period with severe pain in the muscle wall along the site of the incision and severe diarrhea with low abdominal pain and severe persistent nausea. i can't eat or go anywhere as activity makes the diarrhea worse and i tire easily. my doctor wants me to hold off taking immodium for several weeks to allow my body the chance to adjust to the changes, and at the same time dismisses my complaints comparing me to his other patients. i m so frustrated, i had been very sick for 5 years and this surgery was supposed to make me better. will i ever get better and where can i go for more help. i lost my job over this and am too sick to return to work. can someone tell me what went wrong and what can i expect from here. i have been told and confirmed it with research that i should be going between 8 to 12 times a day--however i am going more like 20 to 30. i do know i also have problems with urinary retention and feel this is only complicating things as well as increasing my chances for urinary tract infections. please someone help me, i am really tired of this. thank-you brenda
brenda <almondsugar1@aol.com>
new market, tn USA - Wednesday, March 15, 2006 at 02:23:00 (PST)
I had the ileo anal pouch operation in 1998 at Macclesfield Hospital
Miss Leigh Davis <leighdavis100@yahoo.co.uk>
Manchester, England - Tuesday, March 14, 2006 at 11:33:36 (PST)
I had a total colectomy with ileostomy in October 2003 due to UC. Now I'm considering having the reversal sometime this year. I haven't had it before now due to other medical problems. Would like to hear about your experience with the Jpouch. Also, I would love to have some PSC Buddy's.
Patty <pez905psc>
Alamogordo, NM USA - Friday, March 10, 2006 at 08:50:02 (PST)
I had a 3-stage j-pouch procedure done over the last 1.5 years. It's been 3 days since my last op. on 2/27/06, so can't comment about status just yet.
Steve Livingston <livingston43204@yahoo.com>
Cleveland, OH USA - Thursday, March 02, 2006 at 13:23:47 (PST)
j-pouch 11 yrs. pouch revision jan.4th,2006,about to get hooked back up; but worried about same abcesses/fistulea's recurring in 1 to 5 yrs? SOMEONE PLEASE ADVISE!!!!
john zegouros <lzegouros@cox.net>
middletown, RI united states - Thursday, March 02, 2006 at 08:57:08 (PST)
I,ve recently had a j-pouch revision done due to recurring abcesses/fistulea's. And restrictions above and below the pouch (have had pouch for 11 yrs.) am about to get hooked back up and I'm really worried about same problems recurring after a couple yrs. or so. PLEASE, CAN ANYBODY OUT THERE tell me if they went through same thing and had prolonged good luck, or should i just keep the BAG, as much as I DONT WANT THAT! please respond, PLEASE!!!!
john zegouros <samnoah1@cox.net>
middletown, RI USA - Thursday, March 02, 2006 at 06:57:33 (PST)
in 1997 i was diagnosed with F.A.P. (familial adenemous polyposis). i believe that is the correct spelling. my mother also has the same comdition. when the doctors discovered my condition, they found moms also being that it is a heredity disorder. around january of 97 the performed a total colectomy with a j-pouch on my mom. october that same year i had the procedure. i was 17 at the time. my mother has had some problems since the procedure but now everything seems to be okay in 06. she had several blockages and had to have several more procedures to have some small bowel removed. i have been on the fortunate side. because of my age at the time i was able to heal better. i havent changed my diet much and have never had an obstrucion. my mother s=changed her diet to high soluble fibers and blan foods and still had these problems. i dont know why she has had the problems, but thankfully she hasnt in the past two years. here recently i have encountered a problem. my j-pouch is protruding out of my anus. i am seeing a surgen in a couple of days do see what caused this and to see what can be done. any advice would be greatly appreciated. jason stewart
jason stewart <cjgstewart@yahoo.com>
albany, ga USA - Tuesday, February 28, 2006 at 19:33:24 (PST)
I had (HAD, I love it) ulcerative colitis until 2 weeks ago. Now I wear an ileostomy pouch until May when I will get the reversal. I have questions about the second part of surgury, yet I am mainly volunteering for the buddy list to help someone else through the process of choosing surgury and beginning recovery. I, fortunately, had the support of a friend who also had the surgury and honestly believe I would have lost my head without her. All the doctors and nurses can tell you all the facts, but when it comes from someone who went through it, you can begin to have peace of mind. I am willing to be a contact person by phone/email right now and when I am able, visit someone in the hospital or even help take them to an appointment. Thank you for this website, I really want to be there for someone else.
Mary <mjosten79@yahoo.com>
Grapevine, TX USA - Monday, February 27, 2006 at 16:09:05 (PST)
It has been 13 yrs since having the J-Pouch procedure d/t ulcerative colitis. I have been experiencing abdominal cramping, distention and sluggish, slowed bowels. Is this a sign of pouchitis? Is diet a factor with these episodes> thanks for your help Jane
Jane <ldyjane1@aol.com>
Weymouth, MA USA - Sunday, February 26, 2006 at 19:01:22 (PST)
UC for 16 years, can't control with meds, now considering Jpouch surgery. want to know of anything tips, advice, what to expect, etc. from surgery and post-op.
Rina <rina.daya@pamho.net>
London, UK - Wednesday, February 22, 2006 at 02:33:10 (PST)
I was diagnosed with UC in 1999, at age 19, and had a j-pouch put in 3 stages over 2000.
Angela M A V <ama9483@comcast.net>
Atlanta, GA USA - Sunday, February 19, 2006 at 18:10:06 (PST)
I had a three step j-pouch but ended up with 5 surgeries and almost 6 years of hospitalization, so if I can survive, any one can, I have plenty of experience and knowledge, so please, by all means....contact me, I'm here for you!
Eric <ericlbird@hotmail.com>
Toronto, Ontario Canada - Sunday, February 19, 2006 at 12:45:15 (PST)
Hi I had surgery to remove a tumor in my rectum, I had a temporary ilioestomy bag for 3 weeks. I had the second surgery to reverse the process. After I got reconected, I have been having trouble. I am always in the restroom i cant go anywhere without knowing where the restrooms are at. I am either constipated or have loose stools.i have a painful ball in the bottom of my rib on my left side[I wonderwhat that is?]My surgery doctor said it was normal that the intestines are retraining themselves. He siad to drink plenty of fluids, high fiber foods and eat my veggies and fruits. I am doing all that but I am still the same way. All I WANT IS THAT WHEN I GO TO HAVE A BOWEL , I WANT EVERYTHING TO COME OUT AT THE SAME TIME , NOT A LITTLE ONE TIME THEN 3 MINNUTES LATER I GO AGAIN 5 OR MORE TIMES IN A 5 MINNUTE TIME FRAME. iS THERE ANYONE OUT THERE THAT HAS GONE THROUGH THE SAME THING AND HAS GOTTEN OVER IT. please let me know how long it takes to have normal bowwel movements.
nahum garcia <cgarcia72385@satx.rr.com>
san antonio, tx USA - Sunday, February 19, 2006 at 12:04:19 (PST)
Scheduled for J Pouch surgery in September 2006. Presently have an external ileostomy pouch as a result of surgery to cure Ulcerative Colitis.
Bruce Wilson <bruce.wilson@hotmail.com>
Ottawa, ON Canada - Friday, February 17, 2006 at 21:59:12 (PST)
Having reconnection surgery 02/24/06, am a little nervous have heard that the first month isn't fun...Had a LARGE polyp in my rectum, removed the entire rectum, streched my colon down and created a j-pouch and new rectum...
Kim Lake <lake5family@aol.com>
Castle Rock, WA USA - Friday, February 17, 2006 at 19:31:22 (PST)
Three step total colorectomy with J pouch. Diagnosis changed in surgery to Crohns, by Dr Wexner, the best at Cleveland Clinic, Weston. It is a daily struggle.
Stan Simmer <smsimmer2@aol.com>
Naples, Fl USA - Friday, February 17, 2006 at 17:18:43 (PST)
I just had the reconnection surgery on February 3rd 2006, and am adjusting to new system. It is such a blessing to be reconnected and rid of the ulcerative colitis.
Nathan Anderson <na Three step total colorectomy with J pouch. Diagnosis changed in surgery to Crohns, by Dr Wexner, the best at Cleveland Clinic, Weston. It is a daily struggle.
Stan Simmer <
smsimmer2@aol.com>
Naples, Fl USA - Friday, February 17, 2006 at 17:18:43 (PST)
I just had the reconnection surgery on February 3rd 2006, and am adjusting to new system. It is such a blessing to be reconnected and rid of the ulcerative colitis.
Nathan Anderson <nateandleah@juno.com>
Sheridan, WY USA - Friday, February 17, 2006 at 11:51:20 (PST)
I have Familial Adenotomous Polyposis and have had an illieostomy and reversal.
Cortni <goddardc_06@hotmail.com>
Gaylord, MI USA - Saturday, October 22, 2005 at 23:12:03 (EDT)
Had sever UC. Ileonal anast. with J pouch 7 months ago. I have had pouchitis issues and am trying a specific carbohydrate diet. Some success. Just starting to be active again, cycling, hiking, etc. I struggle with dehydration and sometimes it's hard not to get depressed, just remember you're not alone!
Dusty Heyrend <dusty@kbear.fm>
Pocatello, ID USA - Saturday, October 22, 2005 at 12:16:33 (EDT)
I have been diagnosed with colorectal cancer in 2/04. I had some colon removed and now wear a ostomy bag. I work and am trying to raise a 10 year old by myself as I lost my husband to cancer. I have been getting social security as a widow raising a minor. Because of my income, they have taken my social security away and now I am left with hardly any money to support my child and to buy my supplies. Do you know of any program that can help me with my supplies? I am torn in how to provide for my child and what do I do for supplies that I have got to have. I am a nervous wreck worring about this. I have to work to get my health insurance but that is so very expensive for my daughter and myself. Please give me some guidance. Thank you.
Carolyn <shaydee@charter.net>
Hastings, NE USA - Saturday, October 22, 2005 at 01:19:56 (EDT)
I had rectual cancer which was removed at surgery and given a lleostomy for seven months. I recently had reverse surgery. I would like to hear from anyone that had the reverse done as i am having a hard time with the process.
gloria <gyoung45@juno.com>
spring valley, ca USA - Wednesday, October 19, 2005 at 22:25:11 (EDT)
< I have a J-pouch in four stages, the last stage was completed in 1999. The surgery was the result of Ulcerative Colitis.
Gurdeep Singh <gurdeep7@gmail.com>
London, England - Wednesday, October 19, 2005 at 13:30:29 (EDT)
i have st had a ileostomy due to having crons diease for arond 10 years now feelin ok
lisa sykes <terrysykes707@btinternet.com>
devon, england - Tuesday, October 18, 2005 at 16:19:09 (EDT)
Diagnosed fall 2004, it was mild at the time. My ulcerative colitis was unresponsive to medication and I had a huge flare up in April 2005. I was hospitalized for a month and required emergency partial colectomy. I had the j-pouch surgery September 2005. I hope to encourage or help others going through this terrible disease.
Pia <piarintala@hotmail.com>
Lively, ON Canada - Sunday, October 16, 2005 at 10:34:31 (EDT)
I had my colon out when i was 14 im now 19 and i still get depressed and paranoid physically and mentally, i really need some comforting and support, or someone i can talk to to help us both, :) please add me to your hotmail msn list my address for eamil and msn is andrewjnash123@hotmail.com thanks :)
andrew <andrewjnash123@hotmail.com>
DEVON, UK - Saturday, October 15, 2005 at 18:24:58 (EDT)
I had my colon out when i was 14 im now 19 and i still get depressed and paranoid physically and mentally, i really need some comforting and support, or someone i can talk to to help us both, :) please add me to your hotmail msn list my address for eamil and msn is andrewjnash123@hotmail.com thanks :)
andrew <andrewjnash123@hotmail.com>
DEVON, UK - Saturday, October 15, 2005 at 18:24:57 (EDT)
I was finally diagnosed in 1977 with Ulcerative Colitis after about 3 yrs. of being told I had indigestion. At the age of 18 I was rushed into the hospital and had my large intestine, colon, and rectum removed. I don't have the time right now to go into the mental changes that took place over the next few years but contrary to how I felt at the time, I thank God every day for the day that I have just experienced. I am hoping that maybe someone who is going through the depression that comes with this kind of situation will talk with me. I was wanting to die rather than to have the surgery. If it had not been for the support group I had I am sure I would have.
Jim Morse <ivorytickler1960@email.com>
Beaverton, Or USA - Wednesday, October 12, 2005 at 23:11:36 (EDT)
I've had Ulcerative Colitis since 2001, I'm looking into have the j-pouch surgery. If anyone has some advice to help me with my decision please email me. I'm absolutely terrified. Thanks
Dawn <dawn_694@hotmail.com>
Piqua, Ohio USA - Wednesday, October 12, 2005 at 22:40:01 (EDT)
I had my surgery in June 04 and have been feeling quite well. I hope I can help someone with questions etc
Lynn Lumb <lynn_lumb09@hotmail.com>
Toronto, Ont Canada - Wednesday, October 12, 2005 at 21:40:37 (EDT)
I have had a j-pouch for about 6 years some complications but think its the best decison i could have made
Joshua A. McCleese <mccleese17@yahoo.com>
Galion, Oh USA - Tuesday, October 11, 2005 at 04:50:51 (EDT)
I found out that I had Ulcerative Colitis at age 6. I had my large bowel removed at 13 and have been living with a J-Pouch since 14. So far all is pretty well with the pouch, now 12 years later. The ocassional infection, and upset, but for the most part I feel so much better living with the pouch then I did suffering from UC flareups. While in the Hospital for my first surgery I was visited by a girl who had her large bowel removed as well. It was such a help to be able to connect with someone who was going thru the same thing. I would love to be able to do that from someone else who may have questions, or just the need to talk or vent.
Heather Hayden <heatherhayden2@hotmail.com>
Halifax, NS Canada - Friday, October 07, 2005 at 23:14:22 (EDT)
i had the j pouch surgery on sep. 19. i was lucky enough to be a one stage surgery, although im having a very hard time with my diet. either im constipated so bad i cant move or i have diarrhea so bad i cant get away from a bathroom any advice, tips, any type of info is deeply needed and would be greatly appreciated.
kim reeves <kswift7395@yahoo.com>
aurora, in USA - Friday, October 07, 2005 at 16:37:27 (EDT)
Thanks for this web site! I had UC until New Years Eve 2002/2003 when I had a complete colectomy, 1/2 of my rectum removed and my appendix removed. All was basically fine for the first year. Had to take Immodium AD & Metamucil just to have a formed stool. This now has not been working for almost a year. I have had several prescriptions for Flagyl & Cipro inwhich I take several MG's of each 3 times a day for 10 - 14 days. While on these meds I feel really good but get the gassy noisy loose then all liquid stools with in days after I get off of the meds. I have also tried VSL#3 and prednisone with NO luck. Only the Flagyl & Cipro together work. Wonder if I will have to stay on these meds forever? Nothing else seems to be at risk at this time. Any feedback? Anything would be helpful. I also have massive muscle ache and joint aches. I have been tested for 4 types of arthritis and all were negative. I don't have M.S., M.D. or Lupus either. Any ideas what I can have the Primary care physican to check for now? THANKS!!! in advance for your help!
Jim <jimcore@excite.com>
Austin, TX USA - Thursday, October 06, 2005 at 13:35:57 (EDT)
Hi, I'm Mara, I have ulcerative colitis and was diagnosed at the age of 15... I just turned 20. I have been on tons of different treatments and medications. I am thinking about surgery. I am a nursing student at a college in PA. It's called Indiana University of Pennsylvania (IUP.) I am looking for a recommendation for a surgeon in Pittsburgh. I would really like to go to the Cleveland Clinic, but this is out of my insurance network! Before surgery, my doctor wants to try remicade for me. If this actually works, than I won't think about surgery until it comes to that time. I've had a flare-up for about 20 months now, and like I said nothing will control it! I would like to talk to someone who's had surgery that is about my age. Thanks:)
Mara <plfm@iup.edu>
Erie, PA USA - Wednesday, October 05, 2005 at 00:34:28 (EDT)
I had Ulcerative colitis diagnosed when I was 19, (1992), and through it's severity was forced into surgery. Being in the military and having my bills covered, I elected for an emergency "J-pouch" surgery. The procedure was still fairly new at the time, and I was quite young to undergo such an extreme measure. Long story short, I have had my J-pouch for over 10 years, and have had minimal complications that are outweighed by the chance to live a full, happy lessed to have had the doctors that I had, since they were expert and personable. I loved the Mount Carmel Health System and was in both hospitals at different times. I go back for my two year check up in September. I have only had one other experience and that was a slight obstruction last fall and then I developed a kidney stone and I guess they go along with ulcerative colitis. I was over 60 when I had the surgery, so there certainly is no age limit. I have been an RN for over 40 years most of the years in OB. I am currently working part time on a Chemical Dependency Unit as I really couldn't go back to Home Care and needed to be near a bathroom. I did obtain continence but still need to be close. This is a fairly routine job, no challenge like I am used to, but it works, and covers the insurance that is so necessary. (: Nancy
Nancy A. Tjapkes <nancytjapkes@msn.com>
Marietta, Ohio USA - Tuesday, August 09, 2005 at 20:17:52 (EDT)
i have ulcerative colitis,no surgery as of yet...I'm currently on colozal...it's helping so far...and hopefully i won't need surgery! I would like to help in any way i can with other people...
dawn <dwnmckn@aol.com>
North miami beach, fl USA - Friday, August 05, 2005 at 13:14:07 (EDT)
Diagnosed UC 1999 Colectomy W/ J Pouch 11-2003 & 1-2004
Denise DeBord <dmd1987@yahoo.com>
Victoria, TX USA - Thursday, August 04, 2005 at 00:41:43 (EDT)
I had UC for only 2 months and they had emergency surgery at the Cleveland Clinic and had the Jpouch surgery in three stages. I am doing well, however occasionally batter pouchitis and cuffitis.
Michelle <evileyes00@yahoo.com>
Swartz Creek, MI USA - Wednesday, August 03, 2005 at 21:02:23 (EDT)
Had surgery about 12mths ago for UC. Now I think I have Pouchitis ? Bleeding, and undigested food, like lettuce, mushrooms etc. Are these part of it ? or could it be something else
Anne Thorp <athorp@bigpond.com.au>
Townsville, Qld Australia - Sunday, July 31, 2005 at 21:24:05 (EDT)
hI, I have had my ileostomy and stoma for a year now. I had Ulcerative Colitis for several years before surgery. I am currently deciding on whether to have the reversal op. My surgeon isnt keen, but I wonder how it was for other people? Susan
Susan <susmckeever@yahoo.co.uk>
Belfast, UK - Sunday, July 31, 2005 at 16:47:53 (EDT)
My mother, 87, is an illiostimate, and her stoma recedes at times. Her pouch is constantly leaking under the seal and burning her skin. I have tried spray adhesive, putty, by Coloplast and am now trying a wafer type with bag. HElp******
Gail Berk <tennis1@mind.net>
Ashland, Or USA - Sunday, July 31, 2005 at 16:43:29 (EDT)
diagnosed w/rectal cancer a yr ago. after the surgery to reconnect me it has been a real hell. because i have loose stools 75% of the time my butt is raw, really RAW ,and terribly painful. please help, lucy
lucy pavan <lmptim>
allen park, mi USA - Friday, July 29, 2005 at 21:50:29 (EDT)
Ulcerative Colitis Diagnosis - May 24, 1994 Subtotal Colectomy - March 18, 2004 Ileo-anal anastomosis & Loop Ileostomy - August 31, 2004 Reversal of Loop Ileostomy - December 14, 2004 It is 7 and a half months now since my ileostomy is reversed and I no longer have the bag. I expected a much smoother sailing after the surgery, but I can't say it has been the case. I intend to share my experience with others by becoming a J-pouch Buddy! In all, I spent over 5 and a half months in 2004 on the surgical floor of a local hospital for and in-between my surgeries. My experience has been unique, and that is precisely why I want to share it, so others can benefit from it. Love your website from the first glance... Had been looking for something like this ever since the first surgery, and finally found it. Looking forward to join the rest!!!! Happy Healthy Life to All! .Pranav.Amin.
Pranav Amin <rajikhushi@yahoo.com>
Ashburn, VA USA - Friday, July 29, 2005 at 17:18:54 (EDT)
I have had my j pouch for 15 years. I've recently met an eight year old little girl who just got hers. She is having some problems with pain. I'd love to hear from anyone who experienced pain in the first few months after surgery. I had some, but I can't remember anything that sent me back to the hospital. Any input is appreciated. Thanks.
amy sussman <amys@alumni.upenn.edu>
cherry hill, nj USA - Friday, July 29, 2005 at 16:26:39 (EDT)
I had an abscess on my liver, then when healed they found that a diverticuli punctured my intestine. So they did a colostomy. This is very difficult for me. I find i dont want to eat, i have a hard time sleeping, i am having a hard time cleaning it. I am a wreck. I have only been home from the hospital for a week and a half.. Anyone out there have any advice or sound words for me please? Thanks
Eli <reets@pctechnmore.com>
levittown, PA USA - Wednesday, July 27, 2005 at 12:10:02 (EDT)
I had UC, I had the J-pouch proceedure in april, Aug. 1st I'm having the reversal.
cherie l jarolimek <cheriel@cfl.rr.com>
orlando, fl USA - Monday, July 25, 2005 at 17:40:54 (EDT)
I had J pouch surgery in 2002. I had a lot of difficulties. I had to have 5 surgery's in less than a year. I spent 2 years in U.C.S.F hospital only returning home a few times for just a couple of days before being admitted again. I have had a tough road but I am pressing on!!!!! I am doing well now and after all that I went through I am happy to be able to go to the bathroom normally and pleased with my pouch (most of the time) I still have some difficulty and thought that maybe if I had a j pouch buddy it would be nice to share and learn from one anothers experiences!
Bonnie A. Ekblad <msbons@earthlink.net>
Atascadero, CA USA - Thursday, July 21, 2005 at 16:34:59 (EDT)
hi i had my colon removed in march got an abcess but recovered. went in for my reversal the xray showed i was healed but wall must have been week because 2 days after i was home got sick again and 5 days later had it reversed again. my problem is thatwe can't seem to keep the bag to keep from leaking. we r using the holister system now, which i like but still have a leaking problem. can anyone help maybe have some secrets they used.
lynn cupo <steadychic1@aol.com>
las vegas, nv USA - Wednesday, July 20, 2005 at 10:21:32 (EDT)
Had chronic UC cured by total colectomy and one-staged J-pouch in 1998. I've been through it all and can help with questions. Although the past few days I've had what feels like a recurrence just inside the anal stricture. Same symptoms as with UC. Not as extensive, but just as severe. NE comments on recurrences of leftover mucosal tissue after colectomy? I've been using topical steroids but to little avail.
Ken <drken@bellsouth.net>
Slidell, la USA - Monday, July 18, 2005 at 08:54:23 (EDT)
Hi. I live in Creedmoor, NC, which is about 15 minutes north of Raleigh, NC. I was diagnosed with Ulcerative Colitis in 1999 when I was 24 years old. I only had three major UC attacks that led to hospitalizations with the years of 1999 to 2002. My GI doctor and surgeons are at Duke University. I had the two-stage colectomy and J-pouch surgeries in November and December 2002. I had a bowel obstruction that led to a perforation in May 2003. I have two kids, one son who's 4 years old and a daughter who's only 8 months old. I had healthy pregnancies -- one with UC and vaginal delivery, and then my second one without UC and c-section surgery. I'd love to meet and/or help others with their problems, questions, and concerns. Kristie, July 2005
Kristie <LU24LU@aol.com>
Creedmoor, NC USA - Thursday, July 14, 2005 at 19:54:27 (EDT)
I'm always up to being a "buddy" to someone. I carry a positive attitude and enjoying sharing it with others!
Wendy <wwyman@kualumni.org>
Houston, TX USA - Wednesday, July 13, 2005 at 22:58:26 (EDT)
My husband is going to be 63 on July 21. He has had ulcerative colitis for about 50 years, basically untreated. When he was about 17, he was told he probably had ulcers and the doctor gave him a diet to follow and told him to get rest and reduce stress. In the army they told him he had proctitis, usually a precursor to ulcerative colitis. When he had 'attacks' he just stayed home from work and didn't tell anyone. I only realized he had a serious condition when he got a terrible rash with itching after an over-the-top XMAS dinner with friends (three wines, huge chocolate dessert). In January 2002 my doctor told him he had a serious liver problem and sent him to a specialist. In March the gastroenterologist told him he had a colon blockage, had to have it out like now, he also had cirrhosis (spelling?) and gave him medication for the ulcerative colitis. We never went back. My husband has a history of never going back to doctors, of treating himself with lots of bed rest. In December 2004 he started having trouble walking. We didn't know it, but it was adema. In March my doctor sent him to another gastroenterolist - someone who was more delicate and explanatory than the first. The colon blockage was worse. The liver was worse. In January, looking into liver transplants at NYU Hospital, we were told he was a candidate, but that he had a 5.2 cm liver tumor. So we have now at least 4 problems. 1. the bowel blockage. Don't know what to do about it. He is too frail for an operation but may have to have one anyway. From 155 lbs. he is down to 103 with shoes. A predigested IV feed may get around the bowel blockage, we are looking into it. 2. The liver tumor: Today we had a CT scan to see how the tumor has grown since Jan 10 2005. We just started injections of octreotide, an anti-growth hormone that is 72% successful reducing tumors. 3. malnutrition. almost nothing is being digested now. He is on baby food for one year olds or less, seems to have problems with applesauce for 3 years old, we are using Ensure, and looking into TPN, TEN, and enteral feeds. He may opt for a month in a nearby facility that specializes in TPN. 4. Lungs: well, because of all the bed rest perhaps his lungs filled with liquid from October-June, and on June 23rd about 1.5 liters were drained from the lungs. He felt great after that, a little weak, but now his voice is getting whispy again. 5. The heart. A lot of pressure on the heart due to blocked bile ducts. So: I need someone to talk to. Someone who understands the lingo. I just got the info on pre-paid funerals just in case. I'm trying to get him to talk to me about the options, the possibilities, but he seems to be able to concentrate only on one thing at a time, like getting out of bed to the bathroom. On Friday someone from a nursing service is visiting us to see if he qualifies for the nursing home, which we hope to use temporarily. On 7/21 we see Social Security to see if he can qualify for any benefits. He has been retired for about 20 years, and his vocation has been to increase his portfolio (successfully) and to garden. Well, he is too weak to garden now. And I know nothing about his portfolio. I'm scared.
Holly Fuchs <fuchsh@hotmail.com>
Brooklyn, NY USA - Wednesday, July 13, 2005 at 17:44:03 (EDT)
J-Pouch surgery in 1992.
Peter <peteranddan@earthlink.net>
San Diego, CA USA - Monday, July 11, 2005 at 23:49:43 (EDT)
Looking for answers of what to expect from J pouch surgery. I have ulcerative colitis and the doctor says my colon must be removed. Thank you Ed
ed dovers <hdovers@aol.com>
austin, tx USA - Monday, July 11, 2005 at 20:21:58 (EDT)
im 22 and recently diagnosed with fap. i go in for my first surgury on 7-14-05. im scared and had never even heard of this before. words of advice and support much needed. thanks.
lisa <swenninger@netscape.com>
Dallas, TX USA - Sunday, July 10, 2005 at 19:06:37 (EDT)
My 4 year old daughter has ulcerative Colitis. We found out in April 2005 after 2 months of bleeding. Dr. said that she is the youngest patient he has had in his 30 years of practice. She is on Prednisone and Pentasa and does not seem to be helping. Anyone else had this same problem?
Tatjana Hartung <tanja1616@aol.com>
toledo, oh USA - Saturday, July 09, 2005 at 23:57:06 (EDT)
I have had a proctocolectomy and now have the J-pouch and a temporary iliostomy. All of this was due to Ulcerative colitis.
Jacob Willett <Xjac0bmichaelX@yahoo.com>
Cedar Falls, IA USA - Friday, July 08, 2005 at 00:31:29 (EDT)
I was diagnosed with UC, and have had the three stage j-pouch proceedure.
Vannessa <nagr8biz@aol.com>
Las Vegas, NV USA - Wednesday, July 06, 2005 at 19:25:03 (EDT)
I suffered with ulcerative colitis for several years, and last year in December I had the J Pouch fitted/made. I want to give something back by helping anyone who is worried and answer any questions people want knowing and if questions are ones I cant answer I will find out the information for them.
Karen Coble <kcobleuk@ntlworld.com>
London, United Kingdom - Tuesday, July 05, 2005 at 17:49:21 (EDT)
I have Small Bowel Inertia, it started with Colonic Inertia (they took my colon out) then Rectal Inertia (they took my rectum out and made a j-pouch, and now its small bowel inertia, and I have an Ileostomy......Does anyone else have similar things? or if you just want to know about it, feel free to ask me anything, Thanks, Dusti
Dusti <cheeto_dusti@hotmail.com>
Riverton, Utah USA - Friday, July 01, 2005 at 13:57:06 (EDT)
Surgery done 2/2/05--reversal on 4/1/05. I have regained some weight, but legs and joints hurt. Any tips on regaining strength?
Bob <robert.m.o.connor@delphi.com>
Dayton, OH USA - Friday, July 01, 2005 at 12:36:59 (EDT)
I had my orginal surgery to removal rectal tumor July last year. This June 9th I had the takedown; I have a J-pouch. A buddy would be great.
karima <karima1@ptd.net>
Milford, PA USA - Friday, July 01, 2005 at 04:19:38 (EDT)
my daughter has ulcerative colitis and all her med seem to stop working. The doctor is thinking on taking her colon out
cjwe124 <cjwe124@yahoo.com>
nicholson, Pa USA - Thursday, June 30, 2005 at 07:52:23 (EDT)
I have just been dx with uc. I miss at least 1 day a week. I am currently have this problem that when i sit down for long periods of time, in which at my job I sit 8 hr a day, that it presses on my ulcers and I seem to have a flare up a day and this is hard for me to deal with. I am having major depression right now and cry a lot of my day . I am currently on pentasa 1000 mg a day, I also have bacteria overgrowth in which I take xifanan. I do take percocet for the pain but that only last so long. I need someone to help me get thru this or if someone knows of a support group in the northeast section of phiadelphia, pa. Every day is a struggle for me. I am thinking about getting some professional help for dealing with uc. Thanks Debbie
deborah stone <dastone04@comcast.net>
philadelphia, pa USA - Sunday, June 26, 2005 at 18:18:21 (EDT)
I had UC since 1997 and I had my surgery for the J-Pouch in July of 2003 due to pre-cancer cells of the colon. I had complications after surgery including a blood clot in my small intestine. I am doing great and I am leading a happy and healthy life. Although, somedays I do get a bit down dealing with everything. Anyone that wants to talk please contact me.
Christine <angelic@usadata,net>
Plattsburgh, New York USA - Sunday, June 26, 2005 at 13:49:51 (EDT)
I had my colon removed July of 2003. I had UC since 1997 and pre-cancer cells were found through a biopsy. I have the J-pouch, but I had many complications after surgery including a blood clot in my small intestine. I am doing great now and I would do it all over again. My life has been pain free and I can do everything that I did before I became ill. I would like to know, though, if anyone has had the cancer cells reaccur in the small part of the colon that attaches to the pouch?
Christine <angelic@usadata,net>
Plattsburgh, New York USA - Sunday, June 26, 2005 at 13:46:44 (EDT)
I had my colon removed July of 2003. I had UC since 1997 and pre-cancer cells were found through a biopsy. I have the J-pouch, but I had many complications after surgery including a blood clot in my small intestine. I am doing great now and I would do it all over again. My life has been pain free and I can do everything that I did before I became ill. I would like to know, though, if anyone has had the cancer cells reaccur in the small part of the colon that attaches to the pouch?
Christine <angelic@usadata,net>
Plattsburgh, New York USA - Sunday, June 26, 2005 at 13:45:39 (EDT)
Diagnosed with UC in late 1997. Tried to control it with medication till June 1999. Had my colon removed in August 1999 and had a j-pouch created at the same time. Take down surgery was six weeks later. I've been living with the j-pouch nearly six years with pretty great success.
Russ Lowder <rlowder@cableone.net>
Boise, ID USA - Friday, June 24, 2005 at 01:36:03 (EDT)
I've suffered from UC for about a year and half. Just recently had surgery; now have ileostomy for about 6 weeks and then go back in for the J-pouch. Any advice or support I would love!
Chrisan <Lastdawn45@yahoo.com>
McLean, VA USA - Wednesday, June 22, 2005 at 14:47:47 (EDT)
I have had uc for 30years and had a w pouch in 1988 having many problems at present and am waiting for results of tests and need to hear from people who will understand how I feel.
sally <ludlam2000@aol.com>
swansea, uk - Tuesday, June 21, 2005 at 15:05:45 (EDT)
I was diagnosed with FAP in 1996 I was 18 now I am 27 and I have had a J-pouch about 9 years. I have never talked to anyone else that had one, I am so excited to know this is something I can share.
mandy <mandydawnsherman@hotmail.com>
Pampa, Tx USA - Monday, June 20, 2005 at 12:25:30 (EDT)
i have had a j pouch as the result of suffering with uc since 1984 . i have had some incidents of inflammation which the doctors call it pouchitis . antibiotics was always the way they go . but sometimes they create other problems. i have tried everything probiotics seem to have a lot of merit. been doing this for 5 years. with good results. good luck
don m <dgmchrome2@verizon.net>
philadelphia, pa USA - Sunday, June 19, 2005 at 19:46:04 (EDT)
I have Crohns Disease. Had my first surgery 4/22/05 take down surgery end of July. Anyone that wants to talk email me.
brandi <b_mac0703@yahoo.com>
Midwest City, OK USA - Saturday, June 18, 2005 at 10:27:04 (EDT)
I have had crohns for 10 years and have been threw the gamit of tests and have has to surgery's and one intestin cleaning right after my doughtre was born they scaped out my intestins I am looking into havein some colonic hydrotherapy done because I am down for a week out of the month with serev pain bloatig. and vomiting, I just moved to the Makato area so I have yet to find a doctor and I am not on any meds at this point. and have no idea what sort of diet i should be fallowing? I was thinking of starting to juice but is that a bad idea. I guess I have just never gotten any advice on this condition I am 32 mother of three and I am a stay at home mom, in need of someone to talk to that undrstands what I go threw. as well as any advice that I can get. if anyone whats to offer some help please contact me
Jessica Tyley <belladonna131313@msn>
Mankato, MN USA - Saturday, June 18, 2005 at 01:52:42 (EDT)
I am scheduled to have a subtotal colectomy done on June 27th. I am not going to have a j-pouch because I will keep my colon. Anyone else have this proceedure done?
Kelly V <im4unl@yahoo.com>
IA USA - Friday, June 17, 2005 at 21:53:18 (EDT)
UC for over 20 years (began at age of 14). Had my 1st of the two step on 2/8/05, and my take-down on 5/10/05.
Todd La Pittus <todd@lapittus.com>
San Diego, CA USA - Friday, June 17, 2005 at 09:18:06 (EDT)
UC for over 20 years (began at age of 14. Had my 1st of the two step on 2/8/05, and my take-down on 5/10/05.
Todd La Pittus <todd@lapittus.com>
San Diego, CA USA - Friday, June 17, 2005 at 09:17:22 (EDT)
I HAVE HAD A J-POUCH SINCE 1996 AND I AM STILL NOT SURE WHAT HAPPENED TO MY BODY AND I JUST WANDER IF ALL THESE "THINGS" HAPPEN TO EVERYONE.
Mandy Sherman <mandydawnsherman@hotmail.com>
Pampa, TX USA - Wednesday, June 15, 2005 at 12:36:24 (EDT)
Had my colon removed in 1998 reconnect in 1999 and have lived with getting up numerous of times in the night. Had lost great amount of weight, gained back and then some and having some bloating big time some days and having diffucult to take off the excess weight. This bloating is really a pain as I could swear I would explode. The only meds I have been on -prednisone - off for some time and bentylol one tablet 30 minutes before meals if needed. Rarely use it before meals and must say hardly never. BUt when feel I have gaz take it and it helps... Have no idea what is causing it and would appreciate any help from anyone who has experienced this. Thanks
Christine <csunshine4@hotmail.com>
Montreal, QC Canada - Sunday, June 12, 2005 at 08:06:19 (EDT)
Had successful j pouch surgery at Cleveland 20 yrs. ago and until recently all was fine. Now I have an apparent fistula/abcess leading from outside the pouch connecting to and forming a bladder dome cyst/abcess. Aspiration and putting a drain in and then ultimately surgery to seal off fistula is recommended by my surgeon says in all likelihood i will lose my pouch due to complications and adhesions, etc. Surgery is complicated because I also have pyoderma gangrenosum. Any imput is appreciated!
hattie <haarrr@aol.com>
plantation, fl USA - Thursday, June 09, 2005 at 15:08:51 (EDT)
I have an ileostomy as I had my colon removed about 14 months ago. I had complications and had two more surgeries in the same month. I lost 35 pounds and have been unable to gain any weight back. My appetite is not as good as it was before my surgeries but I try to eat foods with a lot of calories. I do take a multi-vitamin. I understand that normally the small intestine puts out nutrition to the body. My question is: Does your intestine put out the same amount of nutrition as it did before my surgery? If it doesn't, that may be the answer to my weight problem. I do not know where to get help for this problem so any comments are welcome.
Skip <mriddell@wi-net.com>
Stevens Point, WI USA - Wednesday, June 08, 2005 at 12:56:08 (EDT)
I have an ileostomy as I had my colon removed about 14 months ago. I had complications and had two more surgeries in the same month. I lost 35 pounds and have been unable to gain any weight back. My appetite is not as good as it was before my surgeries but I try to eat foods with a lot of calories. I do take a multi-vitamin. I understand that the normally the small intestine puts out nutrition to the body. My question is: Does your intestine put out the same amount of nutrition as it did before my surgery? If it doesn't, that may be the answer to my weight problem. I do not know where to get help for this problem so any comments are welcome.
Skip <mriddell@wi-net.com>
Stevens Point, WI USA - Wednesday, June 08, 2005 at 12:54:11 (EDT)
I just had my surgery on April 18. Even though I am still recovering, I am happy that I had the surgery and would like to help anyone I can.
Rebecca Long <edlral@aol.com>
Placentia, CA USA - Saturday, June 04, 2005 at 12:48:23 (EDT)
I was diagnosed with Ulcerative Colitis when I was 15yrs old and had my colon removed a year later. I am now 25yrs old and am living a happy healthy life. If you need someone to talk to or ask questions of, I am here for you. This is a tuff thing to go through and the more support the more better!
Amie Schold <amie1222@hotmail.com>
Flagstaff, AZ USA - Wednesday, June 01, 2005 at 16:34:34 (EDT)
Could someone please tell me a lil bit about the j pouch surgery. What type of surgery is this? Can it work for someone who has short bowel syndrome? Looking to be educated because I would love to see my sister take her life back. Thank you so much. Also where can we find literature on this procedure?
Dee Handley <dee.handley@weyerhaeuser.com>
Lithonia, Ga USA - Wednesday, June 01, 2005 at 10:16:19 (EDT)
My sister, Sondra, has battled Chron's Disease for some 30 + years now which has lead to a non-reversable ileostomy with a very high output. Can some one please recommend a ostomy bag that would work during the course of the night to help prevent her from having to get up and down so many times to empty her bag. With the high output she is only averaging about 3-4 hours sleep because she's up and down all night. Or can you please, please offer up some suggestions that would enable her to get more rest. Thanking you so very much in advance. I am so happy to find the "Buddy List" and can't wait to tell my sister about you! Thank you again.
Dee Handley <dee.handley@weyerhaeuser.com>
Lithonia, Ga USA - Wednesday, June 01, 2005 at 09:51:15 (EDT)
I am having the surgery in August and I was looking to see if someone could assign me a "buddy" in preperation for the next step. Thank you
Julie <OOLIE8@aol.com>
west allis, wi USA - Wednesday, June 01, 2005 at 00:16:23 (EDT)
I had uc for a long time. Then 13 years ago I had j-pouch surgery.It was working fine, Now I have delovped some problems and I am currently undergoing more surgery.It would be really good to have a budy to talk to. Michele
Michele Niven <cupacupatea@hotmail.com>
Toronto, Ont Canada - Tuesday, May 31, 2005 at 00:56:30 (EDT)
I had ulcerative colitis for about six years then in october of 2004 i had my first surgery to get rid o f my colon and had a temporary ileostomy. In January of 2005 I had my 2nd surgery and had my jpouch constructed and had a different kind of ileostomy in March i finally got my ileostomy taken down. Know im disease free and ileostomy free and loving it!!^)
Jennifer Gleason <chelbocat@excite.com>
Ponte Vedra, FL USA - Saturday, May 28, 2005 at 16:45:18 (EDT)
UC for 4 months. Pain. Diarrhea. Vomiting. Dehydration. Blood transfusions. PREDNISONE!!!! Colon out -> Ostomy in. Ostomy out -> JPouch in. And that's my story. I'm having a rough go at it and need some JPouch friends to discuss problems and just vent to. Please e-mail me if you want an e-penpal. I'm an engaged 24 yr old male, living on Long Island. I work at Starbucks but am going to nursing school.
Matthew <pouchpotato@msn.com>
Franklin Square, NY USA - Monday, May 23, 2005 at 22:44:43 (EDT)
I have Crohns Disease and I just had surgery a month ago. If anyone needs to talk or ask questions I will be glad to answer them.
Brandi <b_mac0703>
Midwest City , OK USA - Monday, May 23, 2005 at 13:12:11 (EDT)
In April 2005 I had the first step of the 2 step process. I will be having the reconnection surgery sometime in July or August. I would love to have a buddy to bounce probems and off of and get advice. Thanks
Lora <LCH937@aol.com>
Dayton , Oh USA - Saturday, May 21, 2005 at 14:54:23 (EDT)
Its been 12 years since my pelvic pouch surgery for UC. I feel fortunate to be here today. The quality of life I have now is something I could never have imagined possible when I look back at the horendous way I "lived" just to get through the day. In the past few years I've spent many hours looking into supplements in order to manage my digestive system better and have found a number of them very helpful. I'm happy to help anyone else who needs some support in dealing with the challenges of living with an internal pouch.
Sabrina <spreens@hotmail.com>
Vancouver , BC Canada - Saturday, May 21, 2005 at 13:06:01 (EDT)
I HAD MY TAKEDOWN IN 1999 AND AM DOING FINE.
DANIEL CORBIN <djcorbin@comcast.net>
LAWRENCEVILLE, GA USA - Friday, May 20, 2005 at 18:35:35 (EDT)
I have had the proctocolectomy with ilioanal j-pouch surgery in August and a reverse ostomy in november. Im wondering if any of you can tell me what your life has been like after surgery. Im always tierd and have rectal pain and presure all the time. I was taking IB prophen every day but I know it cant be healthy to take that stuff everyday for ever. Please let me know if any of you have this problem and can give me some ideas of how to get energy and natural remedies to deal with the pain. I have a 3 year old and my husband is in Iraq. We moved before he left so i had to leave my doctor and im really afraid and fighting depression and nightmares. PLEASE HELP
sarah <brkswife@netscape.com>
killeed, tx USA - Friday, May 20, 2005 at 01:30:54 (EDT)
My J-Pouch was done on May 26,2004 at the Cleveland Clinic Florida by Dr. Steven Wexner. The resection was completed on August 17, 2004, and I am doing fine. Of course I have had the usual burning and sometimes leakage, but that is better than the alternative. My husband and I recently returned from a trip to the West Coast (6,609 miles) and I had no problems. I was 71 years old when the surgery was done. I am going to have a little more surgery in the very near future. I have a hernia near the resection incision. My understanding is that the fascia is not closed at the time of surgery. If anyone knows anything about this or has experienced this, I would appreciate your input. If I can help anyone else, I will gladly do so.
Pat <pat5@bellsouth.net>
Gastonia, NC USA - Thursday, May 19, 2005 at 19:49:50 (EDT)
I had my surgery in 2001 had been battling U.C. since 1994. after haveing the surgery things were fin until recently 2005 I was told I have U.C. agian. it is in a 5 cm strip they used to attach the small to the rectum. Is that a usual practice