Guestbook 4

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End ileostomy four one-half months. I'm doing good! Considering J-Pouch in near future. Must decide to keep bag or rectum??? Sounds like an easy decision; however, reviewing all the possible problems experienced by others in both situations complicates such a decision. -- If the J-pouch is a great problem, what is the procedure and what are the problems related to reversing back to ileostomy? Would like to hear from any and all. Will be talking with surgeon soon.
Dan Ives <dives@nstci.com>
Rosenberg, Tx USA - Sunday, April 04, 1999 at 10:20:33 (EDT)

I Was first diagnosed with Ulcerative Colitis in the fall of 1979. I was in grade eleven at the time. I was in and out of remission for eleven years(also in and out of hospitals).The doctors told me that they usually need to operate after ten year to prevent any sort of growth from showing. I knew what the word "growth" meant and told them that I wanted the surgery as soon as possible. The surgery took place in December of 1990 and I was given an S-Pouch. It was a great relief to get it done after all the years of being ill. Life has been good ever since.
Desmond Griffith <grifjone@connect.ab.ca>
USA - Friday, April 02, 1999 at 00:09:57 (EST)

It's almost 3 years since my take-down surgery. I've had a number of problems in this time including an intestinal virus(unknown) which caused severe diarhea and dehydration and subsequent hospitalization which did little good until it ran it's course. Lately, Iv'e experienced anal bleeding and from the indications of some of the letters to this site it maybe an inflammation of the suture from the remaining rectal tissue. I'm reluctant to go back to the doctors who have caused me nothing but grief. I'm looking for some kind of natural relief. Any ideas? Is not causing any significant pain, but I'm nervous about the long term effects and possible surgery later on. I don't want to go under the knife again! In any case, I want to keep the pouch. I like it! Thanks.
mike mahoney <mmahoney@midwest.net>
carbondale, il USA - Wednesday, March 31, 1999 at 20:55:38 (EST)

Hi! what an interesting chat line. I suffered from UC for five years and had a Kock pouch constructed at the age of 19 in 1978( my first son was born six months prior to surgery) This pouch preceded the kock pouch and wasn't very popular due to valve problems. For those who are unfamiliar with this I will attempt to provide a brief description. The rectum and large bowel is removed at the same time and a flat stoma is created using the end of the small intestine. A pouch is created ( using the sm. intestine) and a catheter is inserted a few times daily to empty pouch contents. This surgery was only offered to very few patients in the late 70's/early 80's. For twenty years I had no pouchitis, no obstructions and no incontinence. It was brilliant. In 1997 at the age of 39 I fell pregnangt(after years of infertility) and the growing abdomen and uterus caused the valve to lose its pathway into the pouch. Following the birth I had correcvtive surgery but it was unsuccessful due to the abdominal muscles thinning out and a prolapsed stoam/valve. The only option was to transfer the pouch to the left side and re-construct a new valve. Four months later I am doing very well, and am relieved that I am able to continue without having an external bag. If my sphincter valve had been slavaged twenty years ago I could have been able to be re-connected i.e. a j-pouch. Imagine in the next ten to twenty years- the advancements in bowel surgery are amazing. Presently I am compiling a data base and hoping to produce a bi-annual newsletter for existing kock pouch ostomates(as we often feel isolated and ill informed) and am eager to locate people from all over the world to exchange information and provide advice to each other. This surgery can still be performed by willing surgeons but in the States the B.C.I.R. is offered to patients who have had problems with the j-pouch. Please feel free to email me as I am interested in remedies for gas build up, medications/vitamins/minerals for people with no large bowel and sharing experiences with other ostomates.
kate spanos <spanos@chickmail.com>
melbourne, vic Australia - Monday, March 29, 1999 at 02:25:14 (EST)

I am so happy to have found this site! I had the "pelvic pouch" operation 10 months ago and it sure beats having UC! I'm interested in becoming pregnant (hopefully) and would like to hear from anyone who has had a child since their surgery. I'm concerned with how the pouch will function with the additional weight. Lisa Johnson
Lisa Johnson <BNJ@interlog.com>
Aurora, ONT CANADA - Monday, March 29, 1999 at 00:26:57 (EST)

I am 23 and have battled UC for about 2 years. I am anxiously waiting for j-pouch surgery after this semester's over. I would like to hear from those who have had it done. I can't wait to start my "2nd life"! Wish me luck.
Robert A. Rubio,Jr. <rrubiojr@aol.com>
San Francisco, CA USA - Saturday, March 20, 1999 at 20:10:43 (EST)

I suffered from UC for 10 yrs, and I mean suffered something terrible. The only thing that ticks me off about everyone else with UC is, is that they got real thin. I did right in the very beginning, but after they had me in the hospital for 15 days trying to figure out what was so wrong with a healthy active 18yr old (in 1986), that after the diagnosis and 2 months later; I had put on over 40lbs. It was that nasty prednisone!! I put the weight on so fast that it looked like something inside of my tummy was scratching to get out. My stretch marks were seeping with blood from the inside. Well here it is 13 yrs later, and Im heavier now then Ive ever been. Funny thing is; things still go right thru me, and I dont hardly eat!!! I feel doomed. Ok, sorry for the soapbox chat there; Im really wanting some info on pouchitis, and concieving/delivering a baby with the pouch. Before I committed to the pouch, I made sure I would still be able to have more kids. My Doc said No Problem! Well, that was before the first surgery and now here we are 5 ops later. I also have a belly full of mesh from too many navel hernias. This is a great sight, I wish I had known about this 3 yrs ago (this March 99 is my 3yr anniversary with my pouch). My GI kept telling me for 10yrs that a total colectomy was the only cure for UC; it took my cousin whose a nurse to finally convince me into going to Chicago to see Dr Theodore Saclarides at Rush St. Lukes Hospital to give me the life I had missed for TOO many yrs. I love my surgeon, he gave me a new life, my kids have a mother that can do things with them, my husband has a wife he can actually take out to dinner. And for the first time since I was a teenager, I can go thru a drive-thru and eat in the car. That was something we NEVER did with my disease, NEVER! Just driving by a fast food place had me cramped and in the bathroom for hours. Also, Has anyone got a remedy for gas. Ive tried it all. I get so damn miserable, I cant think. That I would say is the one thing Im not happy about with the pouch- the gas pains. I got lots and lots more that I could say & tell, but Ill save that for later. Once again, great sight :)
Christi <christi@dlogue.net >
Kankakee, IL USA - Saturday, March 20, 1999 at 00:23:21 (EST)

I am the spouse of a j-pouch patient. It is really difficult to find people who understand what we are going through. It isn't easy for us either. I have found a friend on this web site and she really understands what it is like to be the person sitting back and watching this whole thing happen. I'm open to lend an ear. My husband had his takedown on Feb.25th at the University of Chicago Hospital. Dr. Hanauer is one of the best docs to have before the colon has to be removed!
Chris O'Connell <beany@tcbi.com>
Mishicot, WI USA - Thursday, March 18, 1999 at 23:06:45 (EST)

Thanks for sharing. How does alcohol effect those of us that have a "pouch"? I would be willing to share my experiences over the past 6mo. My pre-colitis days are exactly like yours. My "pouch" seems to working OK. I just take it day by day. The real pain and suffering are gone, thanks to the Dr.s from the Ferguson Clinic, Grand Rapids, MI.Dr.s T. Talbott and A. Sinagone who is now at the Cleveland Clinic.
John A. Frisch <John.A.Frisch.cmich.edu>
Mt. Pleasant, MI Isbella - Thursday, March 18, 1999 at 16:23:09 (EST)

Hi, I am so grateful to learn about this website. I am approaching my lst surgery on April 9 for an ileoanal Anastomosis. I have acquired a lot of knowledge just from your website. Would appreciate hearing from J-pouch positive experienced people. Thank you so much.
Sheila Cohen <lesco@usnetway.com>
Lancaster, PA USA17601 - Tuesday, March 16, 1999 at 13:03:27 (EST)

having been diagnosed in (83) and having flair-ups for 10 years, the medicines would not put it back in control, had to have surgury, was a tough desision, but what do you do, life does go on ,and today I FEEL GREAT thanks to my G.I. doctor TURLAPATTI,in APPLETON,WI. and (CHIEF) DR. BRUCE HARMS, at University Hospital & Clinic in Madison ,WI. feel free to write
JOE SELL <jsell76@hotmail.com>
NEW LONDON, wi USA - Sunday, March 14, 1999 at 21:04:20 (EST)

Hi, My name is Nora. I had j-pouch surgery in 1996. Had chronic hives develop a year later which were controlled with a double dose of Claritin until this past summer when I began taking acidophilus and plant enzymes, both in tablet form, before each meal. Now, no more hives and no more antihistamines! My food does seem to be digested better, too. I have enjoyed reading others stories on this page, thanks.
Nora Saunderson <terrance@hevanet.com>
Portland, OR USA - Saturday, March 13, 1999 at 19:23:44 (EST)

I was diagnosied with UC in 1984 when I was 17, I never really had any bad flare ups, spent most of my time in remission thanks to Asacol and salazaprin, the docs always said I was one of the "lucky ones". In December 1997 I had moved to New Zealand to be with my husband when I got sick. I thought I just had the flu because I never experienced Nausea and vomiting with my flare ups. I kept telling the docs that this flu( that wouldn't go away)was causing my UC to flare up again, eventually I went to another Doctor who informed me other wise. I was admitted into hospital on Dec 30 1997(happy New Year). the colonoscopy showed total large bowel involvement I was then put on TPN and High does of steroids. Two weeks later there was no improvement the doctors suggested surgery, I said no way so we tried cyclosporin which after only 3 doses I started having seizures and ended up in ICU, still I refused to have surgery the thought of having and ileostomy terrified me, even if it was only going to be temp orary. Finally after I and 1/2 months in the hospital I still showed no progress even with the steroids and TPN, the doc told me have sugery or start digging, so then I thought why am I trying to hold on to something that is trying to kill me, off to the OR i went for my 1st operation in late Feb, the surgery went well but I lost my husband (he couldn't handle it)so I came home. My surgeon David Schoreder in New Zealand was wunderful I hated to give him up But my new Surgeon in Hamilton Dr Peter Tam did my Second operation after 4months of recovery time. I hated having the ileostomy I was soo depresed, I would not give up my pouch for anything, besides having some leakage, which they say will go away in time, and a few bouts of pouchitis I'm feeling pretty good; even better than I did when I was in remission. I will have my one year j-pouch anniversary in June 99. I'm so glad I found this site and to know there are people like me and I would love to hear from anyone outhere.
Ingrid Kletke <ingrid.kletke@sympatico>
Hamilton, ON Canada - Thursday, March 11, 1999 at 18:38:59 (EST)

I had my second surgery on Feb.10, feeling so much better than when I had UC but still not "normal" I would love to hear from others on diet, skin irriation, sexual problems, exercise etc.. I have lost a lot of weight and hair is that normal? I am 26 years old and live in the Boston area!
Janette Jaynes <janette-s@usa.net>
Hanover, MA USA - Thursday, March 11, 1999 at 14:15:30 (EST)

I JUST FINISHED MY LAST SURGERY ON THE 19 TH OF FEB., THIS WAS MY OSTOMY CLOSURE. IT HAS BEEN DIFFICULT GETTING USED TO MY NEW POUCH SO I AM SIGNED ON FOR MUCH NEEDED SUPPORT
LISA KELLOGG <JCK@AOL.COM>
MILWAUKIE, OR USA - Wednesday, March 10, 1999 at 02:33:05 (EST)

Hello. I'm a 21 years old german. I had the surgery 2 days after my 18th birthday (horrible gift), but i feel good at all. My surgery was only 1-step, i didn't had a bag, stoma or something like, i got the pouch directly. 4 weeks ago, i had some blood in stool from a small hurted area near the scar, but could be healed with "Claversal" relative simply.. BTW, i had this FAP, not UC and had never problems until 4-5 month before my 18th birthday, then much blood from the polyps and a "date" for the surgery. I hope you can understand what i wrote or meant (i doesn't with all that what you wrote, but the most..) Excuse my english & Greetings Alex
dERaiLLs <dERaiLLs@gmx.de>
Germany - Monday, March 08, 1999 at 17:42:29 (EST)

Hey everyone. I'm a 21 yr old male who went through a 3 stage surgery in a period of 10 months. I can totally relate to anyone who hates having the bag, cause I hated it myself, and it made me very angry and depressed. My UC was diagnosed at 13, and I had surgery right before my 19th birthday since the UC was getting so bad and medication wasn't doing much at all. The surgeries were extremely difficult for me, but after all of this, it is definitely worth it to not have to live a life with UC. It's great that there is a procedure to reverse the bag as well. That was the best thing to be able to get that bag off that I hated. So many people with IBD and going through these surgeries deserve so much more credit than they probably get. I would love to hear from anyone to discuss my situation further, and also help relate to problems that anyone may be having. It would feel really great to me also to be able to help anyone with their questions and concerns about surgeries, and IBD. I'm sure there is still stuff I can learn! I still get depressed and angry with how my life as been, but what do you expect when your life has had so many years of pain and agony? Some people are so ignorant about things like this, that it makes me sick. I think more doctor's need to show a lot more compassion as well. I'd like to see them handle it so well if they had to go through it. That goes for anyone who acts like it's not a big thing, and you should get over it so quickly. You can't go through major surgeries and disease, and not expect someone to be affected emotionally and mentally. The only thing I have problems with now is leakage at night. I didn't want to wear pads in my underwear at night, but I do it so I don't crap all over my underwear! But hopefully it will slow down more as time progresses. I really hope this leakage is the only thing I need to deal with, cause I've had enough! I'm sure many of you reading this can relate. I'd appreciate any suggestions about controlling leakage at night. I take Imodium to slow bowels, I know to do the Kegel exercises, and not eat too late. I tried Metamucil but I didn't like it much. My GI doctor told me to try Fiber-Con pills. Anyone familiar with that? Sorry this letter is so long! If anyone who knows me is reading this, I don't have AOL anymore. This is my e-mail address at Montgomery Co Community College. I hope to hear from some people soon. It would be really cool to hear from people close to my age too. There don't seem to be many who write in on here.
John Marple <F14705D@acad.mc3.edu>
Lansdale, PA USA - Monday, March 08, 1999 at 14:20:53 (EST)

I am so thankful to have found this site- I only wish I had found it sooner. I suffered from UC for 10+yrs & after having a severe flare up in Aug of 98 which landed me in the hospital w/pancreatits & UC I had been on numerous drugs without success. I had gained 65 lbs on the hi doses of steriods & was sent to Cleveland Clinic where Dr. Lavery did an exam & determined immediate surgery was required as the entire colon was bleeding. I underwent stage 1 of jpouch surgery on 1/22/99 & my hemaglobin dropped to 5.7 but MD"S sent me home anyway. The complications at home included wound dehis which required surgery to reclose. Now 6wks post op I am feeling better but still week. 2nd surgery is scheduled for 5/11. I am scared to death. My hemaglobin is slowly coming up but I continue to bleed rectally in small amts. I hate the ileostomy & my husband will not even come near me. He has been supportive emotionally but physically I feel deprived. I would appreciate any support from fellow bag ladies who have been thru this & can tell me what to expect. Thank you all in advance.
Connie <jtthrash@penn.com>
PA USA - Saturday, March 06, 1999 at 16:25:30 (EST)

i have familail polyposis, and am scheduled to have surgery in april. What i noticed is that everyone is talking about having 2 sometimes 3 surgeries for it. My surgery will only consist of one. The whole thing will be done during one hospital visit, 1 surgical procedure. I will be in hospital 7-10 days. My question is, is this procedure not very well known? if not, please e-mail me and i will give you some names of doctors that will do it. They have said the procedure does not always work (meaning in 1 procedure) and that it has a better chance the younger you are. My younger brother and sister had the procedure done last year and are having no troubles at all. Nice web site! Keep up the good work
Aaron <instigatr@hotmail.com>
Colville, wa USA - Friday, March 05, 1999 at 23:16:57 (EST)

This is a very helpful site. Quite often the experiences of real people is the best information to have. My son Jason is planning a jpouch operation soon. Has anyone had an ileorectal operation and have been diagonsed with Ulcerative Colitis. Most surgeons do not perform ileorectal but Jason and I would very much like to talk with someone who has had an ileorectal operation. Some surgeons will perform this operation if the person qualifies. Jason is 19 and lost his colon Christmas day. Thanking you in advance. Jose
Jose Saenz <saenzl113@aol.com>
Burke, VA USA - Friday, March 05, 1999 at 19:25:36 (EST)

I would like to hear from anyone who has pouchitis.I had uc for 10 years prior to having a J pouch in 1984. I was the 13th in Scottsdale, AZ to have op. I go up and down with problems, but for the most part I handle it fairly well. I am 59 and it does not slow me down much. In July 1997 we were on a trip in our RV and I developed terrible diahhrea. My surgeon told me it was pouchitis and gave me Flagyl. In June 1998 I had a total knee replacement, first major surgery I have had since J pouch and after three days I developed a blockage. Had the tube down my throat and x-rays every day for a few day until they unblocked me. I have had problems ever since. Have swelled up even though I do not eat that much and have put on around 30 lbs. Today had a flex sig. and diagnosis was that I have pouchitis. I have little ulcers, redness and swelling in the pouch. As pouchitis is new to me, I would like to hear from others to have it and how they handle it. Does diet do it? Once you have it, is it there for ever? Do other people notice that a change of water makes a difference? Has anyone else put on weight. I feel full of gas and feel if they just cut me open and let it all out I would just deflate and that would be wonderful. I also have a problem in that I cannot push down to have a BM, my anus/rectum area closes up, so I have to push my belly out to have a bowel movement and it does work. Anyway for all you new J pouchers, as far as I am concerned the J pouch is the way to go, don't think I could live with a bag. I have just started water aerobics. Life is too short to let medical problems pull you down. You only go through life once.
MARY LOAR <RB144@juno.com>
Keizer, OR USA - Thursday, March 04, 1999 at 19:36:37 (EST)

I am 23 years old and have UC. I was told last Friday that because of considerable damage to my Colon, I will need surgery. It has thrown my life into tumoil, but I know it's the right thing. What I am most afraid of is incontinence after the second surgery. I want to be able to return to school by September. Can anyone reassure me that there is a possibility? This J-Pouch site gets two thumbs up, my mental state is in much better shape since discovering it. Thanks Grace!!!
Lori King <kingl@students.canadorec.on.ca>
Canada - Thursday, March 04, 1999 at 17:15:21 (EST)

Hello,,,,I had my colon removed in Dec. 98. Right now I have an ileostomy. It is not working well for me. It breaks the seal on the wafer about every 3 days and I cannot even bend over and tie my shoes unless the bag is empty. I am usually active and play sports but I am finding out that I cant play like I use to. I am wanting to get a j-pouch I think. Could someone tell me how many trips to the bathroom a person usually makes with the pouch? Do you think it was worth the surgery? I really dont know what to do but I am very unhappy with this bag. Its not the looks but it just keeps me from moving freely. I asked the doctor could he have put it somewhere else but he said no. Any comments would be very helpful. Thanks ,,Paul
Paul <pf318@juno.com>
va USA - Monday, March 01, 1999 at 19:01:41 (EST)

I had my ileostomy surgery over 10 years ago after having U/C for more than 25 years. The pouch procedures were somewhat new and untested so I did not feel comfortable with this 3 surgery procedure. I am, glad to see that this type of surgery has become more available to U/C patients. It is nice to have choices. My ostomy is no problem because it gave me back my life. The international Ostomy Association and the United Ostomy Association both offer support to people who have had cotinent procedures done or are looking for information. The UOA also has an annual Youth Rally or camp for kids who have ostomies, continent procedures, do self catherization or have IBD and are facing some sort of surgery in the future. It is for kids aged 11 to 17. You can Call the UOA at 1-800-826-0826 for information or feel free to e-mail me. Steve
Steve <sstriz@earthlink.net>
Tacoma, Wa USA - Sunday, February 28, 1999 at 18:58:15 (EST)

I was diagnosed with familial polyposis in 1993, and had my j-pouch constructed in March '93, and my takedown in May '93. I have been problem-free for 6 years, but found out this week I have a polyp in my ampulla {?) which needs to come out, which means possibly another big surgery. Has anyone else had this experience?
Shannon <Sheeshpen@aol.com>
London, KY USA - Saturday, February 20, 1999 at 16:22:30 (EST)

Im in between surgeries for my j-pouch. The doctors arent real sure if I had chrohns or uc. I became ill with my disease for the first time when I was 6 months pregnant with my twins. I was put on high dose prednisone to which my flareup responded to. As I tapered off it my disease flared again. It nearly killed me. They had to do emergency surgery. I was too sick for them to construct the pouch, and in the mean time i had an ileostomy. The pathology report on my colon showed uc. Yet my gi still thought it was chrohns because of the diseases skip areas. I had put off my j-pouch construction because I didnt want to take a chance with my now good health. I was no longer ill all the time. I didnt have to get up and run to the bathroom in the morning while my infant then toddlers would cry for me. With the ileostomy I had truly become healthy and could do anything. Most of all care for my kids. They no longer had to see mommy at the hospital. I was "sitting on the fence" on the decision to had the j-pouch or not. My husband doesnt mind the ileostomy and it truly isnt a bother for me. In November I decided to go ahead and do it. So my j-pouch was constructed. My take down surgery is scheduled for the first week of March. My problem is that I have had light rectal bleeding ever since the surgery in November. My doctor tried conditerizing the area thats bleeding. Its where the new pouch is stitched to my rectum. My question is could this be active chrohns disease? Or is this just normal. I got mixed messages from my doctor. Im wondering if it will get worse after my ileostomy closure. Has anyone else had a similar experience?
Susan <stubatter@aol.com>
Sunriver, or USA - Saturday, February 20, 1999 at 00:11:27 (EST)

I had the J-pouch procedure 1/29/93 at age 19 for familial polyposis. I have a big family history of the disease. I just happened to find this site - it's nice to know that I'm not the only one (as young as I am).
Diana Matthews-Pitts <pitty57@aol.com>
St. Louis, Mo USA - Thursday, February 18, 1999 at 06:32:57 (EST)

I had the j-pouch surgery in 1994 and have had problems since. I go to the bathroom twice the amount of times that the doctor expected, and i can't sleep throught the night. I am now pregnant(4 months)and don't forsee any problems. My ob-gyn says it will not be a problem to have a vaginal delivery, but i am nervous about it. But i just follow the diet that the doctor says and so far everything is well. I have really enjoyed this web-site it has showed me that i am not alone in this battle of the bathroom. Well if any one would like to talk to me about anything please don't hesitate to email me, i would like some insight on pregnancy also. Thanks again. KIm
Kimbelry <Kap221@aol.com>
Phila, Pa USA - Thursday, February 18, 1999 at 00:44:24 (EST)

We just finished our CCFA Support Group here in Rochester, NY where your Web Page was mentioned. Thought I'd check it out. I can recall a "Peter's Web site" and will look through my histories to see if it's still active, and a possible link for you. Thanks for doing this, there are people with lots of questions and big decisions to make.
Dwight Hill <DQHill@aol.com>
Rochester, NY USA - Wednesday, February 17, 1999 at 22:51:56 (EST)

I'm 29. I had my surgery in '91. I just found I'm pregant & I'm looking for feedback on nutrition, delivery (c-section or vaginal), and other information that may be helpful to me. I'm willing to share my experiences as well as help anyone that may need advise from a "veteran" (as my doctors call me) of the j-pouch. Any information on the topic of pregnancy would be greatly appreciated! Anna - poynerchamberlin@mindspring.com 2/17/99
Anna Poyner <poynerchamberlin@mindspring.com>
Norfolk, VA USA - Wednesday, February 17, 1999 at 21:57:25 (EST)

Thanks to my successful J-pouch surgery in the latter part of 1995 I was able to get on with my life and finish my PhD (I'm about to turn 30). I had forgotton what being free of UC was all about (it was this realization that prompted me to have the surgery)! Both surgeries went smoothly and I was back at work full time 6 weeks after the second surgery. My surgery was done in Buffalo, NY and I would be very happy to talk to anyone about the procedure.
Ilana Mushin <I.Mushin@linguistics.unimelb.edu.au>
Melbourne, Australia - Tuesday, February 16, 1999 at 23:25:53 (EST)

I had the j-pouch surgery 14 years ago when there was very little info or support out there. Just recently discovered this site. Judging by most entries, I would be considered a senior member of the j-pouch club. This is a great web-site that would have helped me greatly when I had my surgery and recovery. Would recommend the surgery to anyone. I had led a very active life since then. Now 39 years old, 2 kids, 1 wife and a dog. Would welcome any inquiries to bobwheat@msn.com.
bob wheatley <bobwheat@msn.com>
va USA - Monday, February 15, 1999 at 14:37:08 (EST)

I am an RN on a Medical-Surgical floor, and interested in a support group that i may tell future patients about.
peggy gibino <dgibino@erols.com>
manassas, va USA - Sunday, February 14, 1999 at 20:43:53 (EST)

Thanks for this site. After 11 years of UC, I am now indicated for surgery. I would like to know if any of our readers can recommend an excellent hospital and surgeon for a j-pouch in the Houston area. Thank you for any information you can give this scared guy.
Roberto Alba <albarb@aramco.com.sa>
Dhahran, Saudi Arabia - Sunday, February 14, 1999 at 02:05:22 (EST)

I just wanted to say thanks for this website and the opportunity to read other stories. I was diagnosed with Familial Polyposis Coli in October of 98. I had the first surgery in November, which followed with 3 more emergency surgery's. Then Febuary 1st I had the 2nd surgery(my 5th)to put me together. What a journey, but knowing that there is a future made the journey worth it. I would love to talk to other's about issue's. Thanks
Ron <Wytbolt@aol.com>
C/S, CO USA - Friday, February 12, 1999 at 20:42:13 (EST)

It was really cool to find this place and know I'm not the only one going through these surgery's and emotions. In October of 98, Familial Polyposis Coli was found in my colon, the shocker was I am 29, had no symptoms, and no family history of it. November I went through the first surgery, and experienced alot of complications, one surgery became 4 (3 of them emergency). I just completed the 2nd (my 5th) surgery and am now trying to get back on with life. It is great to read these stories and know there is a future...THANKS.
Ron <Wytbolt@aol.com>
C/S, CO USA - Friday, February 12, 1999 at 18:02:34 (EST)

My son had the j pouch done in May of '94. He had some complications in September of '94, and dropped 40 pounds. (He was 12) Back then they told us it might be pouchitis. My question is, Does pouchitis cause nausea and vomiting?
Lauren Coleman <colecoff@zianet.com>
las cruces , n.m USA - Friday, February 12, 1999 at 09:51:59 (EST)

My colon/rectum was removed in Dec. 1996 and temporary ileostomy taken down in Feb. 1997. Only a bowel obstruction caused by scar tissue from the stoma area a month later has slowed my down since. I golf (walking) regularly and participate sometimes in basketball and other games with my 4th-grade students. I don't know if my pouch functions continue to change at this late date (2 years post-surgery) or if I'm just learning to live with it better, but I seem to have recently turned a corner. Many days now, frequency of bowel movements is almost normal, with the only rough spots at night after supper. I cease taking medication (OTC loperamide 4-5 times daily -- 2mg) in mid-afternoon. I may try taking some before bed. After 10 years, chronic ulcerative colitis and steriod treatment had caused me to feel, look and think lousy. I had the makings of osteoporosis at 38 from the prednisone. Now, in retrospect, having the ileoanal anastomosis and J-pouch is a no-brainer. I feel better than I have in years, and expect that to continue. Couldn't have said that a few years ago. And that is the bottom line. Tim
Tim Sousley <tsousley@hotmail.com>
Columbia, TN USA - Thursday, February 11, 1999 at 12:37:13 (EST)

this is the first time i read about others having th jpouch. it was nice to read others stories. i had the first surgery in nov. 1990, and the second in 1991. i want to mention that between the first and second surgeries that it is very im- portant to do sphincter exercices. i did mine faithfully and believe this has made a difference. i can usually sleep through the night. i have had no complications since my surgery. the first surgery was more difficult, but the second was easy, and my health really improved after that. i have had two children since my surgery without c-section. i had no complications. my diet is also very regular and there are only a few things. i watch out for. i am also active and play sports alot. i'm here to give others hope, and not trying to brag. i rarely see myself as any different than those with a colon. please feel free to contact me at djkelley@execpc.com
ann <djkelley@execpc.com>
Racine, Wi USA - Sunday, February 07, 1999 at 21:21:22 (EST)

This is a fun website. Wish I'd found it before my surgery 1-20-99. I have a love/hate relationship with the bag. Love it because I've lived with the disease/alternative for 10 years. Hate it for the times I've messed up emptying it and the times changing the barrier. And they put the stoma right where my belt goes! If I put the waistband below the stoma it pinches off the flow to the bag, if I wear it above the stoma, I look like Gomer Pyle. I'll buy some XL sweat pants, (black, to cover those inevitable spill stains) and deal with it. Kudos to Dr. Harms and his crew at UW Hospital, Madison, WI. They are practiced experts, up to speed, and frequent operators. I've never felt as secure as I did laying in that hospital bed, surounded by healthcare pros.. My favorite part was where they set three square meals in front of you, on time like clockwork. I've continued this "no eating between meals" thing at home. I'm looking forward to the takedown is a couple of months. As Arnold said in the "Terminator", "I'll be back."
Dave Liebmann <LIEBMANNS@prodigy.net>
Stoughton, WI USA - Sunday, February 07, 1999 at 12:20:08 (EST)

My daughter had J-Pouch surgery in July, 1998. Within a few weeks of the surgery she was hospitalized with fever and abdominal pain. She was sent home when the fever was brought down, but was hospitalized again a few weeks later when the fever recurred, and was released again after a few days when the fever went down. The pain persisted. A pouchogram about three months after surgery showed leaks in the pouch. The abdominal pains subsided but she developed a pain in her rectum about this time. Her doctor reccommended waiting three months, concentrating on good nutrition, in hopes that the leaks would repair themselves. During the three months the pain in her rectum persisted but was partially controlled by pain medication. A pouchogram taken in January, 1999, six months after surgery, showed that the leaks had healed. However, because of the pain she still had, her doctor recommended waiting further before closing her stoma in hopes that the pain would recede and ordered reduction of her pain medication. She is now in the process of reducing her pain medication, but thepain has become more severe. She describes her pain as feeling like its a stick in her rectum. After extensive x-rays and ct scans the doctors have been unable to determine the source of the pain. The pain is still severe, she continues to live with her stoma, and because of the uncertain timing of the surgery to close her stoma, she has been unable to go back to work. If anyone who reads this has had any experience with a similar type of pain, or has any insight into the possible cause of this pain, a response would be appreciated.
sy <sygloria>
USA - Saturday, February 06, 1999 at 16:32:34 (EST)

I will celebrate my two-year, post-surgery anniversary in June. Finding this guestbook and reading the similar problems of other people and the more serious problems of still more makes me very thankful for how much the J-pouch surgery has helped improve my life. I am anxious to her from all the ladies who are going through a pregnancy with the pouch. Please keep us updated. Thanks again for all the support and advice from everyone.
MG
TX USA - Friday, February 05, 1999 at 16:01:17 (EST)

I just had the 2nd step of the J-pouch procedure on 1/22/99. Things are actually going very well after some small complications in the hospital. But I would love any tips/suggestions/comments on how to make the best of this...especially the gas pains. Thanks
Stephanie <stephOT@webtv.net>
PA USA - Thursday, February 04, 1999 at 21:05:31 (EST)

ok i decided to read your website and i now realise i was in the wrong place! i have no large bowel, i have no colon, i have no tailend, but nevermind i'm still here, maybe you could point me in the right direction, tell me who i should be talking to. paulx
paul dawson <paul@mitchelldawson.freeserve.co.uk>
newcastle, uk - Wednesday, February 03, 1999 at 20:03:37 (EST)

hello folks, what is a "j" pouch? i had that little bugger uc but i got the whole lot whipped out back in '96 -never felt better, got married, got promoted, is a "j" pouch an internal pouch or an ileostomy like what i've got? please keep me updated with your lingo as i speak the queen's english! keep the faith paulx
paul dawson <paul@mitchelldawson.freeserve.co.uk>
newcastle, t+w uk - Wednesday, February 03, 1999 at 19:50:36 (EST)

For all the 'Pelvic Pouch' experts out there........I would love to hear any advice/info you have regarding diet and nutrician. I have had successful surgery a year and a half ago. Things are great but still on the top of my wish list is to be able to sleep through the night without waking up to go to the bathroom. I would love to hear any success stories.
Melissa Brown <hrcombrow@holthumber.weston.ca>
Toronto, On Canada - Tuesday, February 02, 1999 at 20:24:24 (EST)

I was diagnosed with UC in 1981. I was in and out of remission over the years. I am Canadian and we were being transferred to Atlanta with the disease active. It was a very difficult time and I finally had J-pouch surgery in April 1994. After reading some of the other entries I can really relate to some of the nightmare situations and coping methods we all look for from other people. I joined CCFA here in Atlanta and that was and continues to be a wonderful resource. I met a young woman who had the surgery and her attitude and perserverance is what pushed me to start making enquiries into having the surgery. I had a wonderful Gastroenterologist here in Atlanta, Dr. Michael Galambos and my surgeon Dr. Adel Bagh. They have been very helpful suportive and empathetic. I am very grateful that they came into my life when they did. After all the drugs and side effects I don't regret the surgery. It's not perfect and I have obstructed twice and needed to be hospitalized. This site is very helpful to other patients suffering from UC. At least they have somewhere to get information from people male or female who have gone through this horrible illness. It's nice to see so many success stories and so many caring people on this website. It's part of my favorites now.
Marianne Lecoq Fortin <TwoCts4Moi@aol.om>
Atlanta, GA USA - Monday, February 01, 1999 at 19:56:31 (EST)

I am 11 years old and was diagnosed with UC when i was 7. I have had my colon removed and am going to have the second part of the surgery in a couple of months.I have the bag now and am eager to get rid of it.All my friends at school ask me a lot of questions and I am afraid they are going to find out about my bag (I dont want them to). If anyone has the bag I would like to hear from you.
Chris <AstroRuler@aol.com>
USA - Saturday, January 30, 1999 at 19:12:03 (EST)

My name is Sarah and I was diagnosed with UC 1 yr ago. Six months after having my first child. Good to find other people in the same predicament and that I have a website to go to for more information on the condition.
Sarah Glendenning <sarah-glend@cwcom.net>
Manchester, England - Saturday, January 30, 1999 at 16:51:20 (EST)

I have had UC for about twelve years now, and up until the begining of 98 was coping fine. Now I'm very sick And no drugs will help me. I am going for my first surgery in feb 99 and I'm not really scared. I've had alot of time to concider all my optins, and have tried alternate meds. I am optimistic that this operation will be a turning point in my life. I am 25 years old and still have alot of life to live. I also discovered that I have a liver condition due in part to my UC and would like to hear from anyone who has a similar experience.
Darren MacEachern <dmaceach@cadvision.com>
Calgary, ab Canada - Thursday, January 28, 1999 at 17:14:35 (EST)

Hello, I just discovered this site. I'll be having the first stage of the j-pouch surgery around the third week of February/99. Dr. Lahr in Charleston, SC will be performing the surgery. The second stage should take place about 3 months later. I think I've tried just about all of the available drugs, including a brand new one called Remicade Infliximab. The Remicade is IV infused, and required a temporary hospital stay. It seems that it actually worstened my symptoms. I'm very nervous about having the surgery - no, make that just plain scared, but something needs to be done. If anyone wants to contact me, my e-mail is geoman@sccoast.net. If you would like more info. on Dr. Lahr, he has a book out called "Shining Light on Constipation" which has details on the j-pouch surgery. You can find the book using a keyword search on the web, or ask your local book seller about ISBN 0-9648176-3-2. Love and prayers to all who have this disease. Melanie
Melanie B. Pope <geoman@sccoast.net>
Conway, SC USA - Sunday, January 24, 1999 at 19:33:10 (EST)

W O W an information source for anyone who has a question, this is great !! My problem began when I was 20. It went into remission for ten years, but when it came back it came back with a vengence. Three weeks of drug therapy and the loss of thirty pounds is where I found myself when I was walking out of the hospital doors, relieved but not cured. Six years later ulcerative colitis reared it's ugly head again but this time, after eating up 45 pounds [of my 190 lbs.] I found myself once more back for another three week "hotel" visit. This visit was not successful so my doctor sent me to Mt. Sanai hospital in Toronto where I took yet another dive health-wise and had to make a hasty decision to opt for the two stage pelvic pouch proceedure. Scared nearly out of my wits I agreed to the operation. Except for a couple of minor set backs I think that this operation is so great, Iwish I had done it a lot earlier to avoid as much grief as WE all go through. There is little question that it is a horrifing idea to have them cut you open, but the end result and the minor difference of basically the number of and looseness of your stools is an easy thing to live with comparitively speaking. I hope that my testamony may help someone make that hard decision a little less threatning. All I can say is my result is increadably easier to live with than before. Good luck, my heart felt prayers go out to you.
James Clarke <jamesncoco@idirect.com>
Toronto, Ont. Canada - Thursday, January 21, 1999 at 23:21:05 (EST)

I was diagnosed with Ulcerative Colitis when I was 12. My father is also a sufferer, having lived with a colostomy bag for over 50 years. When diagnosed, my greatest fear was having a colostomy bag like dads. 4 yaers ago it happened, I had the first stage of my j-pouch surgery, I was only supposed to have a bag for 6 weeks. Due to complications, wound infections, adhesions etc, it turned into two years. I discovered a colostomy bag wasn't that bad, it was preferable to the pain, and going to the toilet 50 times a day. I've had my j-pouch for two years now, and my only regret is that I didn't do it sooner. I am now 29 and looking at starting a family, I am interested in hearing from any one who has given birth with a j-pouch.
Michelle Harris <stushell@mpx.com.au>
Melbourne, Vic Australia - Thursday, January 21, 1999 at 17:28:30 (EST)

I was diagnosed with ulcerative colitis 4 years ago. I did all the research and never thought that I would end up in surgery having my colon removed. After a major flare-up in which my colon almost perforated, the surgery was my only option. I had my first surgery On April 1st 1998. After living with an illeostomy for 6 months(which was horrible), I finally had my last surgery in October of 1998. I have a S pouch and my surgery was done in Madison, Wisconsin by Dr. Harms, who is fantastic. I feel 100% and couldn't be more pleased. It is great to have energy and to be able to eat anything. I 29 years old and my husband and I want to start a family. I would love to hear from someone who has gone through pregnancy with a pouch.
Michele <vorlop@execpc.com>
Milwaukee, WI USA - Tuesday, January 19, 1999 at 21:39:22 (EST)

Have just found this site, its very good. I had UC for 8 years and have just had the final operation to form the pouch. Its still not perfect but i think it improves gradually from week to week. Id love to receive e mails from fellow pochies with any tips advice etc and i can hopefully return the same. im 34 live in Gloucester UK
david carter <DCa9958343@aol.com>
Gloucester, UK - Tuesday, January 19, 1999 at 16:55:37 (EST)

I had my first surgery on July 20, 1998. I had UC for 13 years. The firs four weeks went well. I had my first blockage in Sept. and had to be admitted to the Emergency room. I had my second surgery on Oct. 12. This was after being admitted to the hospital for blockages again. The doctor said the blockages may be cause by the illeostomy. Blockages started occuring again the day before Thanksgiving. I was in the ER twice more the following week. I had surgery to remove adhesions on Dec. 7, 1998. The tube for my nose was removed early and I spent a 4 days after surgery throwing up. Since then thing have been getting better. My pouch works great. I can go to the store without breaking into a sweat from nerves. The blockage however were a nightmare. The pain was terrible. I would like to know if anyone else has had problems with adhensions. I this a chronic reocurring problem. If I did not have the blockages I would easily say have the surgery was the best thing I had ever done. I allowed me to get my life back. My children do not ask me anymore why I alway have to go to the bathroom.
ciro <cssj@app.com>
NJ USA - Tuesday, January 19, 1999 at 10:48:31 (EST)

hello. my internet provider is in the process of changing names, if the address below doesn't work try this one..........
Jessa <jessa@cpinternet.com>
MN USA - Monday, January 18, 1999 at 18:27:08 (EST)

This website is great! I am 19 years old and have been dealing with UC for approx. 3 years. After exhausting most possible medications I finally decided to have surgery. I had the first stage of J-Pouch surgery on 12/23/98 at Mayo Medical Center in Rochester. Everything went as expected, I HATE the "bag" but if all goes well it's only for 3 months. I would love to talk with anyone who has questions about the first stages of this surgery OR hear from anyone who has info. about what I can expect/dread after my second surgery. THANKS!
Jessa <jessa@computerpro.com>
MN USA - Monday, January 18, 1999 at 18:23:57 (EST)

I have had a J-pouch since 4/95 and have been doing fine!!!
Mark Metallo <dmpmet@dreamscape.com>
Syracuse, NY USA - Sunday, January 17, 1999 at 19:52:53 (EST)

I had my surgery at UCLA in 1990 by Dr. Fonkalsrud. Since then it has always been difficult to live with the frequency and uncomfortable, sometimes painful, sense of urgency. Gas seems to be a particular problem and causes considerable discomfort, especially as I'm unable to pass it without having an accident. I'm up at night three to four times, and only now am I learning to take Imodium to get more sleep. No test was ever performed on my sphincter or rectum before surgery, other than a "squeeze" test. There has never been a suggestion that it was good to have a proctoscopic exam every year or so. All in all, I'd said I've failed to keep myself fully informed and I'm thrilled to have found this web page. I used to think it was wonderful that I lived with UC for so many years (28) so that a new surgical procedure developed; but I'm beginning to think the web may mean as much to me or more. Thank you for the information I've collected from your site. It will change my life.
Gary Katz <GKatzz@aol.com>
Los Angles, California USA - Friday, January 15, 1999 at 10:41:49 (EST)

Thank you so much for this wonderful, informative and supportive website. I was dx'd with UC at age 20 (although more recently the docs weren't sure if it was CD or UC) and at age 35 had a total colectomy and and j-pouch pull through in 2 steps. This was on my wedding anniversary because of toxic megacolon, on Oct. 14, 1998 and the reversal of the ileostomy was 7 weeks later on Dec. 7, 1998 by a Cleveland Clinic trained surgeon Dr. Michael Arvanitis. The surgery was done at the hospital that I work in. I had what I considered many complications such as a hemoglobin of around 7.5, and the need for a central line (I was butchered by the residents who finally made the connection on the 9th try) and TPN (which went fine), 2 units of blood transfused, all prior to the surgery. I also needed 1 unit during surgery. I was in the hospital for 2.5 weeks before my surgery to try to treat me with solumedrol which did not help. The GI tried to d/c me twice, however, although I was complaining of excruciating pain and vomiting DURING bm's and despite a climbing fever to 104.2. At this point I refused to leave and another GI dx'd the toxic megacolon and the need for emergency surgery. Well, as soon as I was extubated I was screaming in agony because the morphine was not strong enough. They gave me an epidural, but it shifted and only numbed one side of me! They had me on Dilaudid, and many other drugs that put me in such a stupor, I think they thought I was comatose. THe doc took out the NG tube before I was extubated and my system was paralyzed for longer than they expected, causing me to be nauseaous and vomit green bile constantly, so I endured the unpleasant experience of having an NG tube inserted in me while conscious! Since the reversal, I have been doing very well and am now 5.5 weeks status post and have my energy level back! I'm now able to pick up and take care of my 40 lb. 22 month old who had pretty much forgotten who I was for the past 3.5 months (he still prefers his daddy in the middle of the night). I've gained back 8-9 lbs of the 25 I lost (one of the few positive things about this whole thing). I am going to the Carribean next week with my husband, and then returning to work the following week. I am experiencing some perianal irritation and have found many of your suggestions helpful. I can eat almost everything already and thrilled to not have to take any meds for the first time in 15 years.
Shira Kirsh <KatzKirsh@aol.com>
Freehold, NJ USA - Thursday, January 14, 1999 at 13:34:15 (EST)

I have found the web site very informative and plan to write to some of the other people living with a J-Pouch.
Amy Hansen <SnAHansen@aol.com>
Vacaville, CA USA - Tuesday, January 05, 1999 at 23:23:40 (EST)

I recently found this website. I found it very informative and helpful. I have FAP, unlike everyone else I read about. I had step one of the J-pouch on November 9,98. I will be having step two on January 22,99. Although I live pretty much a normal life, I am looking forward to getting rid of my ileostomy. I have great confidence in my surgeon at Johns Hopkins. If anyone is interested in finding out more about him, please email me, I would more then recommend him. Other family members who have had this surgery were also greatly satisfied by a surgeon in Pittsburgh, who I also greatly respected. I will definately pass this website on to other family members as needed. Stephanie
Stephanie <stephOT@webtv.net>
PA USA - Monday, January 04, 1999 at 16:23:45 (EST)

My name is Marie Howeel.age 52 and I have had a J-pouch for almost 10 years. I sufferred from Ulcerative Colitis for 15 years and had every type of medical treatment available as I refused to have an ileostomy. Eventually my consultant, Dr.D.B.Trash at the Manor Hospital, Walsall, told me he could do no more and suggested the then relatively new (in the U.K)ileo-anal anastomosis with a J-pouch. The operation was performed in 2 stages at the Queen Elizabeth Hospital in Birmingham by Professor Michael Keighley. His positive, confident and caring attitude convinced me the operation would be worthwhile. The planned 6 months with an ileostomy after removal of my colon was reduced to 4 months as my general health had improved tremendously...I was able to cope with the ileostomy better than I expected but was glad when the time for creation of my pouch arrived. I was told that both my operations would mean 2-3 weeks in hospital but in each case I was home in 6 days.The forecast by the doctors that it would be about 2 years before I felt the full benefits of the operation proved to be just about right although improvement began almost from day one and I was back at work in my catering business in afew weeks and improved dramatically in the first 12 months. During the first 2-3 years I took part in research by Professor Keighley's department and counselled many patients who were considering the same surgery. I now lead a normal healthy, full life and only attend hospital for a review every 18 months. I am now the secretary of the "Get up and Go" Club, based at the Manor Hospital, Walsall which aims to arrange meetings for patients with a pouch to meet socially and to discuss the advantages and problems of the pouch.The meetings are usually attended by the surgeon, dietician, stoma nurse etc. As you may gather I am more than pleased with the outcome of my operation and will be forever grateful to the hospital staff who made it all possible. I would be only too pleased to discuss my experiences with anyone contemplating surgery or who has already had the pouch operation. My address: 18, Spenser Avenue, Perton, South Staffordshire.WV6 7QQ Tel: 01902 756158 e-mail: john@howell18.freeserve.co.uk
Marie Howell <john@howell18.freeserve.co.uk>
Wolverhampton, England - Saturday, January 02, 1999 at 10:49:36 (EST)

Hi, i've just discovered this site. Following colon cancer last year I had my colon removed and was temporarily fitted with a bag. Reversal operation in Oct last year to connect up the jpouch. Things were a bit slow to start and there was a good deal of discomfort for the first few weeks, but the pouch certainly knocks spots off having a bag. All gone well since then - no problems with pouchitis or anything else. Can anyone say how likely pouchiitis or blockage is in any individual ?
stephen merry <smerry@globalnet.co.uk>
UK - Friday, January 01, 1999 at 15:51:21 (EST)

HELLO, IAM A 32YEAR OLD WIFE AND MOTHER OF FIVE . I HAD UC SINCE I WAS 9. I HAD A TOTAL COLLECTOMY AT THE AGE OF 20,AND A J-POUCH AT 25. SEVERAL BOWEL OBSTRUCTIONS AND ABCESSES, POUCHITIS, AND ALMOST ANYTHING ELSE THAT COULD HAPPEN. I STILL WOULD DO IT ALL THE SAME WAY. ALL MY SURGERIES HAVE TAKEN PLACE AT THE U OF C . GOD BLESS ALL AND KEEP UP THE GOOD WORK.
TERESA IOZZODURBIN <DTDURBIN@AOL.COM>
CHICAGO, IL USA - Tuesday, December 29, 1998 at 23:53:35 (EST)

I just found the site. WOW!!! Ineed to read more !
Benny Scott Roll <lizzie@haz-uky.campuscwix.net>
Hazard, Ky USA - Friday, December 25, 1998 at 22:16:13 (EST)

I have used a product called Candistroy to treat my pouchitis. It has worked wonderfully, and I wish more people knew about it. Since I started taking this product 4 months ago, I have been off antibiotics and have had no symptoms. I found out that pouchitis is similar to a yeast infection, and Candistroy fights yeast. Feel free to email me if you want to know more. I have told my doctor about this also. It was his nurse that told me that under a microscope, pouchitis bacteria looks similar to a yeast infection. In my case, that must have been exactly the case, because within 4 days on Candistroy I was 95% better. Hope this helps someone!!
Rita <rita@texoma.net>
McKinney, TX USA - Friday, December 18, 1998 at 10:02:33 (EST)

I suffered too from UC and last year (Dec) I had my J-pouch connected.I've been treated three times so far for pouchitis. I've been ill for two weeks now thinking I have the flu, But the bad cramping and straining to pass the Bowel acually makes me vomit.I'm sore to touch, I feel I've been beat-up.The nausia and weakness is overwhelming. I'm 42 raising three children.I have add with hyperactivity. Since my last surgury I just get exausted by 8:00. I'm so glad to find people who know exactely how I feel. Families are really unaware of the changes your body goes through and Pain. I'm seeing my Doctor today. Thank-you Cleveland Clinic for saving my life! I would love for anyone to e-mail me . Thank-you
Debra Peterson <dpeterson@i-is.com>
Clay, MI USA - Thursday, December 17, 1998 at 10:17:46 (EST)

Melanie, I can totally relate to what you're going through. I too, had UC and young children. I was 5 mos pregnant with my daughter, who's now 6, when I first developed UC. I had a 6 year old son then. I suffered with UC for 5 miserable years, during which I tried everything known to modern man to combat this disease, conventional, holistic, acupuncture, you name it. I scheduled surgery twice, and chickened out both times. I was absolutely terrified to have surgery. Finally, when my husband told me he was preparing himself for my death, I decided I had to do it no matter how scared I was. In Jan. of 97 I had a BCIR done. Though my recovery hadn't been "textbook" by any means, today I'm doing great, I live normally and my children have a healthy mother. I feel better than I have in years. Hope you take heart from this, you've got lots of options. Best of luck to you. Rita
Rita <rita@texoma.net>
McKinney, TX USA - Tuesday, December 15, 1998 at 08:47:03 (EST)

I was diagnosed with UC earlier this year after a massive dose of antibiotics following the premature birth of my son. I have been able to avoid hospitalization so far with this disease, but I have done the whole drug routine, from sulfa to prednisone, and suffered the gammut of side effects - withdrawals, migraines, weight loss and gain, up to 20 bowel movements a day, fatigue, nausea, vomiting, cranky, cranky, cranky, etc., etc. I have been seeing a naturopathic doctor and a holistic allergist and have been able to keep the symptoms under control with diet, but what a diet! No sugar, no cow anything, no chicken or eggs, no beans, on and on. Is this really the way I want to live the rest of my life? I am seriously considering surgery, but I feel like all of the MD's will tell me that my UC isn't bad enough or that I should try the diet a little longer or whatever! I have three young children and I feel like I am losing my life, and theirs', to this disease. I'm at wits end with this...HELP!!! Being tied to the toilet at 31 does nothing for one's self esteem.
Melanie <drheppler@dmts.com>
Milwaukie, OR USA - Saturday, December 12, 1998 at 20:46:35 (EST)

My name is leanna, i have FaP inherited from my father who passed away from colon cancer. I had a illeal jpouch surgery when i was 6. I also had an temporary illiostomy. I am now turning 20 and i have to decide to get a permanent illiostomy , or a reconstruction surgery in which they would cut out the old pouch and constuct a new pouch. This scares me but the idea of having a permanent "bag" scares me. I know what it feels like for others out there that have to deal with this disease.
leanna <therese_1@hotmail.com>
marquette, mi USA - Thursday, December 10, 1998 at 23:38:13 (EST)

Thank you for such a wonderful web site. I have found so much useful information. Familial Polyposis Coli has run rampant in my mother's family for years and this year it hit the youngest member yet, me. I am 29 years old and have a J-Pouch now. I feel so much better. I am glad for the research over the years to give me an option of an ileostomy or not. Thank God for resaerchers and for supporters of it, like you. If I can do anything to support this I want to know. I would love to chat with other "pouchers".
Mellissa Bowers-Soltero <solterozoo@aol.com>
Chula Vista, CA USA - Thursday, December 10, 1998 at 10:22:02 (EST)

Thank you for a great experience at your local meeting in Philadelphia tonight, it was a great learning process.
Randy Strausser Jr <rstrausser@robertspharm.com>
reading, pa USA - Wednesday, December 09, 1998 at 23:38:43 (EST)

I am a 32 year old mother, had UC since 1988, colon removed in 1988, a tem ilostomy, the J-Pouch in 1989, many flare ups and bowel obstructions after second child in 1992. Since then, have had two ilostomies, have had vaginal fitsula repaired once - no success, surgery is booked for Janaury 1999 to repair again using leg muscle. If anyone knows of this prodcedure, please let me know. Rosemarie Caruso jdibratt@acs.ryerson.ca
Rosemarie Caruso, Toronto, Canada <jdibratt@acs.ryerson.ca>
Toronto, Canada - Wednesday, December 09, 1998 at 12:00:58 (EST)

Thank you all for being here. I am 16 months post and still haveing problems with burning bottom. I get depressed sometimes, but have to keep fighting the problem. I am now using Imodium Advanced with FiberCon and Lomotril. When it get REAL bad I use Lidocaine HCI gel and pain pills. I would sure love to get past the "attacks" but I'm still not sure just what sets them off.
Stevie <svincijanovic@mail.scottsdale.org>
Scottsdale, AZ USA - Tuesday, December 08, 1998 at 14:10:30 (EST)

My daughter, Laura, had a total colectomy followed by a straight pull-through reconnection (no J-pouch) in 1995 when she was 12 * years old. She is now 16. She feels like she always has to have a bowel movement. When she does go to the bathroom (up to 3 times a day) it takes 1-2 hours to get it out. It is usually small soft pellet like stool. She had a defecography x-ray that showed her muscles were not opening long enough to let sufficient stool out (1-2 seconds rather than the normal 5-6). This may be called paradox of the muscle. She tried biofeedback but said it was too painful to do a second time. She neither eats nor drinks anything before or during school. She's extremely tired when she gets home, but this is the only way she says she can concentrate and stay in school. She eats a breakfast type meal after school and then a lunch type meal at 8 pm. She often feels stuffed and somewhat nauseous after eating. She's always quite dizzy. She's having hyperalimentation now (2nd time) to help her gain weight and strength. She weighs 97 lbs and is 5'1". She wants no more painful procedures but it is very difficult to see her in the bathroom 2 hrs at a time trying to push the stool out. Is there any new procedure for this type of muscle problem? Is there anything that can be done to make the biofeedback less painful?
Jim Schmitz <jschmitz@parker.com>
Indianapolis, IN USA - Tuesday, December 01, 1998 at 19:13:31 (EST)

I have had my J-Pouch since 1990 and have never regretted for one second my decision. I have had basically no complications since my operations. The daily multiple movements and occasional anal soreness can be annoying at times but it sure beats having a "bag". Would enjoy chatting with other J-Pouchers! Michelle
Michelle <michelle_jorgenson@coneco.com>
Albany, , NY USA - Tuesday, December 01, 1998 at 19:11:30 (EST)

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