Guestbook 2

My son is 19 yrs old and has uc. He had surgery to remove his colon and he is scheduled in March to have the J pouch. He is very active and eating everything. No special diet and he even snowboards with his "bag". If you want to contact him please do so. He loves to e-mail.
Charlie Boucher <5rebels@worldaccessnet.com>
Vancouver, Wa USA -

I am a 34 year old women who has had this disease since I was 15.I had the surgery 6 years ago. It was the best move I ever made. I couldnt leave my house for having to find a bathroom. My life was miserable. My husband left me.He called me "Bag ass".He wasnt mush of a man. but I found another Man a year later Who said the bag just made me special.I am healthy now.I can have a job and I can go any where I want to.There are times still when the bag gets me down,But I was still the best decision I ever madeto have the surgery. I have had no recurring problems in 6 years. I still have to watch what I eat Befor going to work but this part is managable.Iwouldnt Change a thing.If you have this disease,the surgery will make you feel like a whole person again. Write to me email. skinbug@aol.com
Leanne Steel <skinbug@aol.com>
Macon, Ga. USA -

I am 34 years old. Ihave had this disease since i was 15.I had the surgery 6 years ago. I couldnt go any where before.My husband left me because he couldnt handle the bag. My life now is normal.Ican workand am healthy again.And found a new man who can handle it. Leanne
Leanne Steel <skinbug@aol.com>
Macon , Ga. USA -

Hello! I was diagnosed with UC in September of 1996 at 27. My surgeon and GI believe I may have been suffering from the disease since I was 12. I don't know if any of you have had the same experience but I had been told that I was crazy, lactose intolerant and suffering from IBS. I began to bleed in July of 1996 but ignored it and hoped it would go away. I had just finished articling and was enrolled in the LSUC Bar admission course when I finally became so sick I could not function. I was hospitalized for 4 weeks in September 1996 and did not respond to prednisone therapy. I had been in the hospital for 1 week when the teams of doctors told me that if I did not have a total colectomy, I would die. My surgeon suggested a course of cyclosporine in order to improve my health before the surgery.(I went into remission within 24 hours) I was terribly upset. I had hoped to be quickly treated and released so that I could continue on with my life. The thought of having an ileostomy, even temporarily, was devastating. My mother suffers from Crohn's disease and had always resisted the idea of a colostomy. I was afraid that I would undergo the surgery and someone would subsequently find a cure. I worried that I might have such terrible regret that I couldn't live with my decision. I was afraid that I was giving up too easily. My surgeon told me, at the time, that I was not making a decision about whether or not to have surgery, but whether I was to live or die. He said that even if a cure for UC was found in 6 months, I wouldn't be alive to benefit from it. At the time, I felt powerless. Looking back, I see that I was lucky. Unlike some of you, my decision was easy (even though my recovery was not). Looking back, I will always feel lucky that I was able to live. That being said, I was hospitalized again, essentially, from the date of my surgery on November 7, 1996 until I had my ileostomy reversed in March of 1997. I was not one of the patients that is back home in 2 weeks. I had a recurring blockage at the site of my ileostomy and sat with a tube in my nose, in absolute despair, and vomiting everytime I moved my head, for almost 6 weeks before the barrage of tests showed the problem. With a catheter inserted into my stoma, my small intestine finally started working. I was home for Christmas but hospitalized Christmas day, and regularly thereafter until my reversal in March. My intestine, at the stoma site continued to fold, causing a blockage. My doctors determined that the reversal would eliminate the blockage so I returned to St. Joseph's Hospital in London in March and was again afraid, this time because despite the blockage, I had come to really like the ileostomy. I don't know about anyone else, but I found, to everyone's amazement, that the bag did not bother me a bit. I loved not having cramps all the time. Even with the dehydration, vomiting and hospitalization, I felt better, on my good days, than I had for almost 15 years. I was hospitalized after my reversal for another 3 weeks. The operation was a complete success, but I continued to be nauseated and vomited unexpectedly for a couple of months afterward. I have had one bout of pouchitis which was quickly overcome with a week on Cipro. However, I continue to manifest extra-intestinal symptoms, including erythema nodosom, arthritis and some painful nose swelling thing. I have just completed my Bar Admission Course and , after a year in medical limbo, my life is better than I has ever been. My stomach is now more sensitive than it used to be, and I do still get worn out easily. I was on prednisone to control my extra-intestinal symptoms for a short period but am now medication free. I have 8-10 bowel movements a day, but I have found no pattern to the increased and decreased frequency. I am able to eat anything, including milk but some things, like fruit and raw vegetables, come out looking very much like they did when they went in. My surgeon prescribed lomotil (imodium does not seem to work for me) but I seldom take it. Compared to the old days, 8-10 bowel movements a day seems like nothing. It has not been an easy road. It is frightening, discouraging, and painful. For me, it has been worth it. I would be glad to hear from anyone with questions or who just wants to talk.
Liana Cote <raycote@etown.net>
Espanola, ON CANADA -

This is a wonderful site! I am 28 and I had my ileo-anal pouch surgery in Oct. 95 (after 8 years of having UC and about 5 separate hospital stays). For the most part, it has been successful. However, now I am having problems with pouchitis. My main symptom seems to be the constant feeling that I am not emptying my pouch enough no matter how long I am in the bathroom. I have been on cipro, Flagyll, and Rowasa suppositories. I'd love to hear from anyone who has pouchitis problems.
Mike <trixidog@aol.com>
NJ USA -

I had my j-pouch surgery 1 year ago and am doing well, I suppose. I still go to the bathroom much more than I want to (about 8 times/day) but I am in control and free of the pain I had with UC. I would like to get pregnant now and would love to hear from anyone who has a j-pouch and had a baby. My docs said there "shouldn't" be any complications and that I will have to have a C-section, but I wonder about other effects (i.e. does the pouch space get compromised as the baby gets big?). I will also be happy to share info about myself and my experiences with others. This whole experience has not been a bowl of cherries, but things are getting better.
Jennifer C. <andyse-r@email.msn.com>
Livonia, MI USA -

I am glad to see that there are sites on the internet just for UC and J-Pouch. I can relate to many people who had and have what I so. I am 21 years old and I was diagnosed with UC in October of '96'. I went on all of the drugs; prednisone, asacol, pain meds when it really got bad. The meds never worked. 2 months later I was in the hospital for 28 days. I got out, went back to school for the spring semester and got sick BAD again in 4 months. I went back into the hospital and this time I had surgery. A J-Pouch was made and I had an ileostomy for 5 months. I had the second surgery exactly 2 months today (2/2/98) and I feel great. It is great to sit through a class and not be green. I am only on immodium right now and I take meatamucil wafers for "thickening up." I am also on Carnation Instant breakfast to gain back the 40 pounds that I lost. I am so glad I had it done.
John Kay <kayj@tcnj.edu>
trenton, nj USA -

I wish I had found this site before my surgery. My surgery was performed December 8, 1997 in one step. Like everyone else, I had a history of UC and was steroid dependant. I was totaly unprepared for the long recovery. It has been 8 weeks since my surgery and I am still having some problems. My biggest problem is pouch spasms. This cramping occurs all day long and I am only able to have a bowl movement right before the pouch spasms. However, I feel like I have to go all the time. I would love to hear from anyone who also has or had a lot of pouch spasms. I would also like to know how long it took before you started feeling good again. I know I am still eary in my recovery and I am trying very hard to be patient. I just had no idea how difficult this recovery would be. I have experimented with some foods only to have terrible cramps and gas. I am know sticking to my bland low residue diet until I feel better.
Kellie Upchurch <Upchurch@mail.icongrp.com>
St. John, IN USA -

I wish I had come across this most informative page many weeks ago. I am at week 8 after a total colectomy and ileal anastomosis. Being able to share gleaned knowledge would have made my hospital stay shorter and deminished the level of pain & post operative depression. From experience, I have found that 60 mg Codeine Phos 4 hourly for the first week post operatively helps alleviate the unending amount of loose stool with its associated pain & distress. After approx. week 5 I am now at 30 mg 6-8 hourly and can eat virtually anything. I hope to tail off the codeine intake completely within the next few day.
Abe Chalef <emplast@iafrica.com>
South Africa -

Like everyone else, I was excited to find this site. I'm not sure whether I have a J-, S- or W- pouch but I have been happy with the results. I was diagnosed with UC in 1982 and have spent my share of time in the hospital for lengthy stays on IV feedings and transfusions. I took prednisone and Asulfadine off and on for 11 years. When the prednisone stopped working in 1992, I knew it was time for surgery. I then went in and had the first of 3 surgeries. Number one resulted in a illeostomy (with an external appliance) which I had for 2 years. Then in 1993 I had 2-part pouch surgery. It's been almost 5 years since the last part was completed and it was the best thing I could have done for my health. I do periodically have some leakage problems but on average, have about 5-6 bowel movements a day. I have used loperimide (Immodium) primarily and have recently started looking into whether there are any negative interactions with using Lomotil once in a while. As some of you know, it is sometimes difficult to find privacy while in public or at work. I haven't used Lomotil much, but have found it can take me through the day without having any urges. The downside of Lomotil is that it is a controlled substance and I'm not sure I want to get into that too much. I've also read recently about using Metamucil or Citrucel and am going to start experimenting with them. I'll probably try Citrucel as I hear that it produces less gas (certainly don't need more!). I'd love to hear from anyone who has also experimented with Citrucil and/or Lomotil. I know of some folks who use Lomotil exclusively and has no problems whatsoever.
Ellen Bock <ezimbock@juno.com>
Hartford, CT USA -

Was diagnosed with Familiar Adenomatous Polyposis (FAP)in September 1995, had phase one of the surgery in Jan 1996 and the takedown in March 1996. It has been two years since the colectomy and almost two years now with the J-pouch. The experience was a little different for me as i thought of myself as healthy until the FAP diagnosis and did not have UC type problems. I do consider myself lucky though; the doctors told me I had a very good chance of developing colon cancer if I had not had the surgery. I have also not had any problems with pouchitis. I was taking 8mg of Immodium a day for almost the first year, but for the last year have been getting by without any need for Immodium. My perianal skin has pretty much adjusted also and rarely needs any soothing ointment. My diet has also pretty much returned to what it used to be; although I do have to be careful with fresh fruit. It is good to see this Web site. I have also spent some time at the alt.support.ostomy newsgroup. I asked some questions there and made some good contacts when I was first diagnosed and considering my surgical options.
Vic Abeloff <abeloff@ibm.net>
Bel Air, MD USA -

I have had UC for 8 yrs. I have been able to control acute attacks with 80mg Medrol. I have flare ups at least once/yr and the steroid controls it so that I am normal w/in a couple of weeks. However, the side effects and tapering period usually last about 4 months. As many of you know, this 4 month time period sucks and I'm now to the point that recovery only means that it won't be long until I'm sick again. My UC is currently flared up and my doctor has recommended surgery. I convinced myself that I will be better off with surgery, but after looking at the web sites...who knows what the right thing to do is? It seems that there are so many complications. Even those items that aren't complications seem difficult to deal with. I guess I'm worried that if I make the decision to remove the large intestine, then its a commitment that is irreversible and what if...what if this is the last flare up? What if I haven't tried everything? Is there a holistic cure out there? Is a nonabsorbing steroid out there that will not carry all of the awfull side effects of the steroid that heals me so readily. I know that I'm asking too much, too haphazardly, but I guess my mind's filled with many anxieties at this time.
Robert Rummel <rjrummel@duke-energy.com>
USA -

I'm not alone! It has been such a relief to find this site. I am 32 and was diagnosed with UC in 1995, but have had serious intestinal problems sine the mid-1980s. Pregnancy in '95 seemed to trigger the constant flair I've experienced since the birth of my son. Here I am three years later, after feeling like all I do is run for the bathroom and pop handfulls of pills, seriously considering the J-pouch surgery. I keep waiting for "remission" but, it just won't happen! I have felt like such a failure as a mom, wife, and teacher because of the constant fatigue, depression, and anxiety. I am currently on 40mg. of prednisone, asacol, and prozac (it helps). I've tried countless other forms of therapy unsuccessfully. I've now been on the steroids for almost four months and worry about the side effects. I also just switched over to asacol from asulfadine (headaches!) My gastro doc wants me to try 6-MP, but I just don't think I can do it, knowing that it could all begin again once I'm off it in 2-4 years, or that it would even work! I want another child, but can't handle the physical/mental demands under the circumstances. I want to be well and return to living! I have so much more to give than what I am able to now. I have such mixed feelings about surgery. Sometimes I feel like it can't be any worse than what I have experienced on a daily basis the past three years, but then I read some pretty terrible things and think, "maybe I'm not so bad." But I don't want this UC plague to suck anymore life from me!!! I'm teetering on the fence. I know life won't be perfect after surgery, but what do I have to lose? I need your prayers and words of wisdom. My heart goes out to each and everyone of you and it is such a blessing to know you are out there. I hope to hear from some of you friends soon...thanks!
Beth <Steven.Greene@gte.net>
Jonesboro, GA USA -

First the facts: I had colitis for 18 years (since I was 23) and ended up in hospital last year 05/97 for 43 days. Was on TPN for 5 weeks and when they realized that the condition wasn't getting any better and that the medications were no longer helping, my doctor did a colectomy and I was left with an ileostomy pouch. 6 months later I had the ileostomy reversed and had the pelvic pouch surgery. It's now been 4 months since the surgery and I'm going back to work next week - finally! Now comes the question part. After reading all of your comments from the guestbook, I see what a HUGE variation in response there is to the J-pouch surgery. I've had a lot of rouch patches along the way - pouchitis, inflamation, a stricture in the opening of the pouch, etc. and there have been many days when I just want that ileostomy bag back. I never felt better than when I was a "bag lady". I'm not saying that there were no problems with the back - the adjustment at first was hard, but once they came out with those great tupperware-like bags, it was a piece of cake. To those of you who have the bag and are considering the J-pouch surgery, jsut be sure to ask lots of questions before you have it done. It's a huge adjustment after the ease of dealing with the bag. I was never told how long or how difficult the recovery would be from the J-pouch surgery. I'm not blaming my doctor - he's WONDERFUL - but I just her just forgot to tell me, or thought that he already had. Needless to say, when I realized that it could be up a year before I fully recover (and that means 4-6 BM's a day I'm told....) I almost freaked out. I thought I'd be back at work after 4-6 weeks (like I was alfter the ileostomy surgery). Ha!!!! Five weeks after the J-pouch surgery, I was running (or should I say bolting) to the bathroom 27 times a day! It was pure hell. Patience is the most valuable quality because without it, you're a goner. I'm only now learning patience, but I still get frustrated and discouraged easily when I think things should be progressing faster than what they actually are. I'd love to hear from anybody who has had a positive experience with the J-pouch surgery. I find that I still hve a lot of dietary restrictions - I can't tolerate many fresh fruits or vegetables or spicy foods. And worst of all, there seems to be no consistency with foods. I'll eat the same thing two dats in a row and one day I'll be fine and the next day I'll have the runs really badly. Does anybody find that particular foods help (or make it worse)? As for medication - I've been on three courses of antibiotics (Flagyl and Cipro and Salfofalk suppositories) in 3 and a half months. I find it discourageing because I don't want to be on antibiotics for the rest of my life. When does it start to get consistently better? I'm still very up-and-down with it all. I'd love to hear from others so please feel free to contact me. Best of luck to all of you!
Shelley Civkin <shelley.civkin@rpl.richmond.bc.ca>
Vancouver, B.C., Canada -

Has anyone come accross a long term therapy that works for chronic pouchitis? I am on cipro daily, but I do not like taking antibiotics on a long term basis. Any success stories with chronic pouchitis?
Lor <Fern25@aol.com>
USA -

After nearly 14 years having a j-pouch, I am expecting my first child in August. I would love to hear the experiences (good & bad) of others who have gone through pregnancy with a j-pouch.
Penny <gpagani@msn.com>
Baton Rouge, LA USA -

I had Jpouch surgery done at Boston university hospital on 12/4/96 and 2/5/97. The surgery was a success for me but I have had more "bathroom" problems than some of you. I do feel however, that things are slowing down now.I think the diet has everything to do with controlling the BM's. Beef is not good for me at all. Loperamide is a great controller, and time is very healing. Eating in moderation is the secret to success from this surgery. The end results certainly are far greater than dealing with the UC and all of the medications that went along with it. I am really glad now that I had the surgery done and would highly reccomend it to anyone suffering from UC. Anyone wanting any comments on the procedures or after effects may feel free to E-mail me. mojoca@worldpath.net
John Card <mojoca@worldpath.net>
rochester, NH USA -

This is a wonderful site. I am glad to read of everyone's success stories. Mine is a success story as well. After 14 years with UC, I am free. I will be celebrating my 10th year of freedom on June 8, 1998. I feel like having a party for myself. The best thing I ever did was this surgery. Thanks for supporting all of us. It helps to hear of others stories. It helps to grow and get stronger. Thanks so much.
Susan Leggero <leggero@aol.com>
Joliet, IL USA -

I had a colectomy with partial anastamosis back in October and I feel the best I have felt in years. Of course I was scared going into the hospital, that's normal. But I came through with flying colors and have returned to my normal lifestyle, the only change being I have a high fiber diet and I drink at least ten glasses of water daily. If anyone has any questions, please e-mail me and I will answer them to the best of my ability. Again, my e-mail address is icd9man@aol.com
Andrew Rudy <icd9man@aol.com>
Chester, VA USA -

I found the web-site to be very interesting. I had UC for 10 years before I had the sugery. Now I have had a pouch for 10 years. It is good to know I can find yet another place for any questions.
Wayne Taake <wtaake@htc.net>
Waterloo, IL USA -

I am presently recovering from ileostomy surgery. It takes some getting used to, the “bag” that is. I am scheduled for pelvic pouch surgery in a couple of months, as soon as I can get off Prednesone. I hope the pelvic pouch works out and I can get rid of this “appliance”. But after reading some of the stories from pelvic pouch patients I now realize there are no guarantees nor is it trouble free. I’ll just have to take it as it comes. I was originally diagnosed with Chronic Active Hepatitis about 5 years ago. I was put on Prednesone at 50 mg a day. I never had any complaints until my doctor felt long term use of Prednesone was not good. So I began to reduce the amount. When I got to 10 mg I had my first flare-up of Ulcerative Colitis. After extensive testing, I was also diagnosed with Primary Sclerosing Cholangitis (PSC). PSC apparently causes Hepatitis and / or Colitis. The Prednesone was masking the Colitis. There isn’t much they can do for PSC but since the Colitis was sever enough, surgery was recommended. I haven’t experienced much of an improvement yet, but since I only had one flare-up for a short time, I’m probably not that bad off. I have had fever, chills, aches and abdominal discomfort since the ileostomy, but that could be the PSC or the Hepatitis. I’m not sure if I’ll ever be rid of these minor problems but at least I don’t have to deal with the Colitis symptoms. I realize that pelvic pouch surgery is the end of the treatment for most patients but I still have this Hepatitis issue. It isn’t clear what could happen once I’m completly off Prednesone. I guess only time will tell. If anyone has a similar situation or can offer any advice please send e-mail to ctucker@callisto.uwinnipeg.ca OR rtucker@mbnet.mb.ca Thanks, Gary
Gary Tucker <rtucker@mbnet.mb.ca>
Winnipeg, Mb Canada -

Had surgery 10/24 and was back at work within 2 1/2 weeks feeling great with just a little dehydration due to a lack of proper fluid absorption. Reconnect scheduled for 1/7. Thanks for providing a place for me and my family to get more information.
Dave Odell <DOdell@TynanGroup.Com>
Santa Barbara, CA USA -

I was diagnosed with Crohns disease in 1985. Everything was pretty low key and I was basically in remission until 1994. Then the bottom droppred out! I got sick and could not get better. I was told that if I did not have a permanent ileostomy I would die. I got a second opinion (five of them!). Then I met Dr. Deren. He questioned my diagnosis and ran complete tests and rediagnosed me with Ulcerative Colitis. That was truly the first day of the rest of my life. After trying every medicine known to mankind, prolonged TPN and some holistic treatments, I had the J-pouch surgery. I GOT MY LIFE BACK! I am not sick. I don't try to locate the bathroom immediately when I enter an unfamiliar place. I can eat, drink, be a mom, be a wife and not be a patient.....Life is good!
Haley De Stefano <haleyd@voicenet.com>
Havertown, PA USA -

Like many others I am delighted to see that this site exists. I was diagnosed with UC when I was 8 years old (1976?). In 1984 I had intestinal cancer and that is when I had my pouch put in. I do not know if I have a J,W, or S pouch. From 1984-1990 I had a ton of problems with the pouch. I had pouchitis, amnemea, stricturing at the anus, incontinence (day and night), and endless infections. In 1990 I was so ill I could barely stand. Then I started to cathedarize myself 3-5 times daily. Since then I have been in great health, but the proceedure takes about 4 hours a daynot including travel time. I have to be at home 3-5 times a day to do this proceedure which cuts into the quality of my life. It interupts both my work and my social life. A couple of weeks ago I went to see a surgion about having a permenant iliostomy put on. He told me that it may be possible to redo the surgery. Has anyone out there had the segery redone? After reading about some of the other experiences I am not sure having the surgery redone is a great option. I am healthy with no side effects. I would like to feel like I have a little more freedom. I feel like I am attached to my bathroom by an amblical cord. Please feel free to contact me. My e-mail address is jweidman@total.net thankyou again for putting up this site. Judith Weidman
Judith Weidman <jweidman@total.net>
Toronto, Ont. Canada -

I am from Yardley Pa. but am currently living in Boston. I have had an ileostomy since 1986. I was on a lot of medication about 16 pills a day. I had UC for many year prior to my operation and was very ill most days and also during that time was trying to raise two children. I would like to know more about the J pouch. I am not sure what that is I wear an applicance on the out side which sometimes gives me problems of leakage. The barrier breakes. I like to excerise evey day so I don't know if this is part of the problem. I am very glad to be alive and healthy. I am healthier now at 51 than I was at 25. Looking forward to hearing from this group I think it is a great idea.
Donna K <RKrol>
Boston, Mass. USA -

Hello, I plan on getting a J-pouch in Feb. Life with UC sucks so I have decided to take the plunge. I am sure that even with some of the problems associated with the operation life will be better. I'll post again once the operation is done.
Andy Cowan <andyc@igs.net>
Ottawa, ON Canada -

what a pleasant surprise to come across an area devoted to j-pouchers. i had mine installed 5/97 and have had nothing but problems since incl 12-15 bm's/day, recurrent episodes of pouchitis etc-all this while taking 9-12 lomotils/day+imodium+potassium+following a diet.i was recently asked to substitute questran for the lomotil but the result was a significant increase in the # of bm's/day.my condition is such that i am unable to work/shop/travel. i am hoping that there is some other med out there that will work better than lomotil. incidentally, i have seen reference to it possibly taking up to 4 years for the pouch to properly expand! any comments or suggestions would be most welcome.thanx.
bill galway <indunabilly@msn.com>
garden grove, ca USA -

Great to see such a site! Two years ago when I had a pelvic (J) pouch operation it was all but impossible to find anyone in my area to talk to. If anyone in central Ontario (or anywhere else) would like to comisarate about their pouch or operation please get in touch. Regards Joe
Joe Ursano <jursano@vianet.on.ca>
Muskoka, ON Canada -

Well, I might as well be the first to add to the new guestbook. Quite a few entries seem to have disappeared from the last guestbook. Anyway, I was diagnosed with UC in August, 1995. By May, 1996 I was very ill. The surgery for me was not a matter of choice. By the time they removed my colon I was passing not only blood, but tissue as well. I have had my ups and downs with pouchitis, etc. but am happy today to be here and to be free from UC. I only take meds (immodium, codeine, Cipro) when I absolutely have to. Immodium is a good thing when going out for the evening. My diet has changed a bit since surgery. I can't tolerate too many fibrous vegies because they cause horrible gas and don't digest very well anyway. My surgeon told me this is because some fiber from vegies are digested by bacteria in the colon and that's why I can't break them down anymore. I now take a Greens supplement (Greens+) to ensure I'm still getting the nutrition I need. I just had a checkup the other day and everything seems to be OK. Dr. Buie is doing a study group on people who seems to get frequent pouchitis, so I have a biopsy to look forward to next month. Anyway, if anyone wants to e-mail me, feel free. It's always good to talk to someone who is like me!! To everyone, Merry Christmas and take care.....Audra
Audra <audra@prismsulphur.com>
Calgary, AB Canada -

Dear Friends, Welcome back to the Guestbook. Also, please join our discussion group, which you can access from the J-Pouch Home page.
Bill Johnson <bjohnson@j-pouch.org>
Hatboro, PA USA -

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* Health Products *

Health Products used to aid the digestive system include Apple Pectin,
Fiber Food, and Chitosan. Others are Bromelain and Psyllium husk.

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