Guestbook 3

Hi Everyone! It is great to have finally found some people with problems like mine! I have suffered for 10 years with UC, taking sulfer zalizide (spelling?) until it got worse & worse and finally I could barely walk. I was was admitted Oct.14, 1997 to the hospital and spent two and one-half weeks receiving intervenis prednazone (spelling?) unitl they had to operate to remove my entire colin .I was without solid food for 3 weeks. I had two blood transfusions. The bag was difficult to keep on, because of stomach wrinkles, I was always worried it would leak. I then got tested to see if I could get re-connected, and I passed! My daughter asked me, "why would you keep the bag if you have a chance to get rid of it"? I had to face another operation anyway to close the rectum up, and remove the rest of the colin. It wasn't like I was finished with the operation. So, I went for the ileoanal reservoir surgery. It was a two step operation. The first operation was April 14, 1998. It was much worse than the first operation. Much more pain. The problem then was, I still had the bag, and was re-connected at the rectum now as well. So, fluid was leaving my body from two places! I got dehydrated. I got weaker & weaker, till finally my daughter took me to the emergency rom on April 29, May 25, June 3rd! She called me the "Noodle Girl" because I was so limp, weak, no appitite, I was fading away! Finally the Doctor had to schedule my 3rd operation for June 5th. My daughter called and said that I would not make it through the operation if they did not take me in a few days early to get some fluids in to me. So June 3rd I was admitted. The tests showed my kidneys were about to shut down! The operation was also very painful, I spent 10 days in the hospital, and also had another blood transfusion. I feel louzy every day, I now have a VERY sore butt. I go to the bathroom 12 times per day and 3-4 times at night. The gas bubbles passing through really are painful and annoying! I did find using Huggies baby wipes, (or like kinds) really help sometimes, they cool, medicate, & clean. After reading another reader's letter, I am going to try to apply the Maalox topically too. It would be helpful if anyone has any more remidies or hints they could share. At my doctors office, I have asked many times for a support group in my area (Plymouth, Massachusetts, and have had no luck with the info they gave me which was to call the Crohn's & Colitis Foundation. My surgeon is faboulous! His name is Dr. Ronald Bleday and he is located at Beth Israel Deaconess Medical Center in Boston, MA. Your web site is wonderful, this E-mail address is my daughter's, I will pick up any messages approx. once a week. It helps to share stories with people that understand it is hard to go through all this alone, thank you. Constance J. Brennan
Constance J. Brennan <crusso@remax@aol.com>
Plymouth, MA USA -

This is a very good site. I won't know what I have until after next Tuesday. My physician thinks I may have Crohns or Colitis. I am 37 years old, and just scared half to death!
Liz Miller, RN <LMillerRN@AOL.com>
Poca, WV USA -

no e-mail address mailing address is 704-E Rapp St...Thomasville N. C. 27360 I will have my 1st (hopefully only)sept23....they will be taking lg intestine fron the cecum to the rectum...real nervous...I am 30 yof....had crohn's for 10 yrs tired of meds and trips to the bathroom...looking forward to being able to go to the mall or grocery store without locating a restroom....feel free to write would appreciate support good luck to all..................lynne
Lynne Hudson
thomasville, nc USA -

This is my second entry. I had my first surgery on 7/20/1998. I was able to back to work in 4 weeks, although I was very tired. I am having no trouble managing my bag and am very good now at changing it. Last week something happen that I feel I should write about. I had a blockage that landed me in the hospital for two days. This pain was as bad as the pain after surgery. In the hospital they admitted me from the ER. They immediately began a SBS. The pain started at about 1:00 am and did not pass until 7:00 p.m. that evening. There were surgeons called in case the blockage did not stop. Thank goodness it passed. The doctors at the hospital believe it was adhesions or a food blockage. A banana is the prime suspect. I go for another SBS tomorrow. I will write again in a couple of weeks.
Ciro Saldarelli <CSSJ@injersey.com>
Toms River, NJ USA -

I am 25 yrs old (24 at the time of my 1st surgery) and was diagnosed with Crohns at age 15. For the following 9 years I underwent annual colonoscopies with biopsies and had a few different doctors go back and forth on the diagnosis. One time I had Crohn's, then the next time it looked like UC. At the time of my colonoscopy in 1997, the doctor told us that my colon looked much better than the previous scope and wasn't nearly as inflammed. Still, just to be on the "safe" side he took some biopsies. Surprise! My biopsies came back with evidence of dysplasia. Given my family history of colon cancer - a maternal aunt whose cancer began in the colon and wasn't detected early enough, she was mid thirties when she passed away, and my paternal grandfather had colon cancer - they didn't want to wait! My physician sent me to a wonderful specialist, Dr. Khoury, in Davenport, IA who helped me make the difficult decision to go ahead with the surgeries. It was a hard decision for me to make given the fact that I wasn't sick when all of this was happening and hadn't been sick for a good amount of time prior. It's been about a year since my surgeries. I had the 1st done 10/14/97 with the "takedown" performed 12/04/97. Things are going pretty well, but I still have trouble with urgency and sometimes leakage. I do ok during the day with usually only 2-4 bathroom trips, but at night I have to get up 2-5 times (depending on the night). Sometimes it's already too late. Also, because of my problems with urgency, I find myself scoping out the restrooms every time I go somewhere, "just in case." I never had to do this before, and I don't really care for the practice!! Also, I have to limit myself to a pretty bland diet. Everything that bothered my colon still bothers me. I don't know if his will ever subside, but sometimes I cheat a little and just resign myself to "paying for it later." Don't get me wrong, I'm glad that I had these surgeries done, my children are small and I want to be able to see them grow up and hopefully see some grandchildren grow up too, but some days I wonder if it wouldn't just be easier to have that bag back and not have to worry about accidents anymore!!! As much as I hated having the temporary ileostomy, at least I didn't have to worry about where the bathroom is or how long it would take to get somewhere! I presently take Lomotil and occasionally Immodium which seems to help most of the time. I will return any and all e-mails!!!
Shelly Schaefer <sbs25@hotmail.com OR msss6@juno.com>
Erie, IL USA -

I had Ulcerative Colitis for over twenty years. I was on major medications all through my twenties and thirties, except through my two pregnancies when I could not take meds to protect my fetuses. At age 43, my body was completely ravaged. I was on Prednisone 80mg per day. I was sitting on the toilet and defecating large amounts of blood at the same time I was vomiting into the bathroom trash can because the prednisone made me nauseated. I lived on 7-up and chicken broth. In 1991, my surgeon here in Sheboygan, Wisconsin, sent me to the Marshfield Clinic in Marshfield, Wisconsin, where I consulted with a gastroenterologist. At that time there was an experimental drug out called Asacol out of the Netherlands. I was placed on this drug for one year. The meds were free; I had to go to the Clinic every three months for labs and a liver function test. Whenever my Prednisone dosage was weaned down to 10mg per day, I crashed and my disease flared up again. Finally, in January 1991 I had a surgeon perform a total colectomy with an ileoanal pullthrough with temporary ileostomy. Two months later I went back to the hospital and the surgeon took down my ileostomy. I thought I was going to have a normal life. I did until the spring of 1994 when I developed the beginnings of a pouch-perineal fistula. It became full-blown in the fall of 1994 and I have had it ever since. My surgeon, Dr. Constante Avecilla, from the Marshfield Clinic, told me that I am one of the few patients who develops fistulas. Just my luck, I guess! He says I need to go through the entire two-stage procedure again to repair the hole in my pouch that leads to the fistula. So far, I have not taken care of it. My 15-year old daughter was diagnosed with UC when she 13. Last month, the same surgeon that operated on me in 1991 did my daughter's colectomy with pullthrough. She did not need a temporary ostomy because she was young, slender, and not on steroids. She is recuperating now. We know UC is definitely familial. My surgeon gave my beautiful daughter a bikini cut, the first one he's done ever! Cut below her naval, she has a 10-inch happy face! I am praying she doesn't get a fistula. I am convinced that they are caused by always having to hold in gas because if we didn't, we'd surely soil our panties! The pressure of the gas in the pouch must have contributed to the formation of the fistula. But, who am I to diagnose? I'm only an RN. Yes, things like this only happen to nurses and their family. Do I sound paranoid? I enjoy reading anything I can get on this disease and the pullthrough procedure. Long-term effects are really not know yet.
Robellie J. Gerk <robellie_gerk@ccmail.rustei.com>
Sheboygan, WI USA -

I had UC for 20 years, and was in-and-out of hospitals several times and on steroids for at least 15 years. J-pouch surgery was done in March '98 and takedown in June '98. It's been 2 months since the colostomy closure and so far I have no regrets. The pouch has worked great. These surgeries were done in Dallas, Tex. at Baylor Hosp. and they have the best colorectal department, that I have every seen. I have been in law enforcement for about 19 years and am currently a Criminal Investigator and I do worry about problems that I hear might occur with the pouch and how it will affect my career. My strength is still not 100%, and I wonder when it will be. Still, the pouch is 100% better than having UC.
Geneva Miller <Rebared55@alo.com>
Rusk, Tex USA -

Haveing the surgery Oct 9 ,1998. I really don't know what to expect.
Robert J. Breen <RBREEN1@AOL>
Waterbury , Ct. USA -

I too have had uc and had the surgery in Oct.93 and the take-down in Jan94. Of those who have problems, as I do, I would like to tell you about a condition called "pouchitis". It is a bacterial overgrowth and resultant inflammation of the pouch and can cause many problems, many of which appear in your messages. If you're unable to tolerate the usual remedy of broad spectrum antibiotics such as flagyll then I suggest you read Dr. Judy Shabert's book, "The Ultimate Nurient, Glutamine" for starters. It gives somes very good info and lists an abstract found in the journal, Gastroenterology,(April 1992):A947, which discusses the use of glutamine in treating pouchitis. I am in the process of trying to get my hands on this abstract so I can start using this to help myself. In addition, I take calcium citrate in a chewable form as the prednisone did an incredible amount of damage and am now menopausal anyway, a liquid potassium daily, vitamin c and mineral ascorbates for the b's and folic acid and some other supplements. I have chosen to investigate and use the alternative whenever possible and so far I'm having some success. Ofcourse some days and times are better then others. In regard to the leakage and burning of the anal area, I chose, after all the over-the-counter junk, to use an aloe vera gelly by Coats. It's extremely effective and can be obtained from a health food store or directly from Coats in Texas,1-800-486-2563. I was also drinking the aloe juice and was doing well with that as it has a tendency to try to normalize the watery stool. I try to watch what I eat as there definitely arefoods that irritate the daylights out of what's left of my gut and I always pay the price when I indulge or simply get too lazy to eat what I should. If anyone is experiencing gas, bloating and other discomforts I usually try take some good probiotics to increase the amount of good flora and it helps to cut down on the bad bugs in the pouch. Be careful though, if you load up on too much of the good flora too fast you can end up with even more watery stool. I hope this helps someone, this site is wonderful, in that I had no one to help me and have been on my own through this entire ordeal. Whatever else I find I'll be happy to pass on through this site. If anyone can help me get the abstract I would appreciate it. Thanks. Sheri Villaverde
sheri villaverde <shalamis@gateway.net>
Valrico, FL USA -

I've had the j-pouch for 7 years, and I've never regretted doing it. It felt incredible to say goodbye to ulcerative colitis and prednisone. I am really happy that I found this website--I know only one other person with a j-pouch. Thanks for being there! I'm always happy to hear from other j-pouchers.
Diane <halcyon@ma.ultranet.com>
Marblehead, MA USA -

You cannot believe how excited I was to finally find this site! I am 30, I was diagnosed with ulcerative colitis at age 16. I had been in and out of remission the entire time I had it- my longest remission being about 9 months. I was steroid dependant and was at the point that there was nothing left to do. I was confused and distressed and not looking forward to a life of bags and messes and mysterious noises coming from my abdomen at inopportune times. I had decided that if I didn't do something, it would be taken out of my hands. I was running around with a H&H of around 7.5 and 25 and was losing lots of blood with each stool and the pain was excrutiating! I finally decided I wasn't ready to die and resigned myself to the fact that this was my destiny- to have an ileostomy. I was hospitalized and began preparing for the surgery. Due to other medical problems, my surgery had to be postponed for three weeks, during which I had to be transfused with six units of blood. I had a wonderful gastroenterologist who referred me to a surgeon for what I thought was going to be your old run-of-the-mill ileostomy, but he began to tell me about this new procedure he had learned to perform at the Mayo Clinic. The more he talked the more the fire within me began to blaze. By the time surgery day came, I was anxious and scared to death. The surgery went well, I had an epidural afterwards to help with pain control, and I did pretty good- all things considered. I had the benefit as well, of a wonderful RN who worked at the hospital where I was that heard through the grapevine that I was going to the have the surgery- she was a j-pouch patient herself and was right there for me through it all. She answered questions patiently, encouraged and gave me smiles when I thought there weren't any anymore. I could never thank her enough for all she did for me. I won't lie and say I did wonderful and went home and jogged the next day, because I didn't. I was sick and not eating when I went home(a fact I had carefully hidden from the nurses)- I threw up for three days and split my incision open at the bottom. My stoma prematurely seperated and fell in about a half an inch. It leaked all the time because I couldn't find a wafer to fit and my skin became really excoriated. To put it in short order, I was really miserable the first couple of months. I did a lot of crying and being miserable and wishing everything from I'd never done it, to wishing I was dead. But I had my reversal December 15, 1997 and I really couldn't be happier. I can live again. I don't hurt for the most part and I can actually go to the bathroom, just like "NORMAL PEOPLE"!! I realize now, I was just overwhelmed with being sick and tired and worn out all the time, and I just didn't grasp that it was over. I remember my friend, Jane, said to me "Just think, you're cured! You'll never hurt again!" That, to me, was the sweetest thing anyone ever said. So for those of you who are in the middle of this, considering it or just post-op and thinking 'what have I done?'...words of experience-It will and does get better and it is worth it! God bless and take care of yourselves, everyone.
Darla Dennison <darrie30@yahoo.com>
West Plains, MO USA -

This is a good site . More needs to be said about the possible down sides to this surgery but I am hoping to be glad I had it. I am still recovering from the take down surgery in Febuary of 98 and while I am making some progress I constantly consider going back to a ileostomy but will give it the full year.
Rick Martin <Rick Martin@nashville.com>
Nashville, tn USA -

I am a 34 years old male. I had UC for over 15 years. It had gotten progressively worse every year. I had my first surgery exactly four weeks ago today. I am back at work and sitting at my desk writing to you. Its been a big change for my wife and children. I truely cannot remember what it would be like to be a normal person, and not have to avoid places without accessable restrooms. One of the reasons I had surgery was to avoid the continuing testing for cancer every six months to and year and then they endless waiting for the results. I am looking forward to a better life. I am doing ok, just alittle tired. Email me if you like. I have lots of stories to tell. Fifteen years worth.
Ciro Saldarelli <CSSJ@injersey.com>
Toms River, NJ USA -

I am 26 years old. I have had a j-pouch for ten years. I had it done at Mayo Clinic in MN. Love life more than ever. This is a nice website. I am here if anyone would like to send an email. I have had a lot of pleasant and unpleasant experiences. Smile! You didn't need your large intestine anyhow, it was just getting in the way!
Elizabeth Hoffman <hoffmanm@pilot.msu.edu>
E. Lansing, MI USA -

Had 1-step surgery 1/98. Used Dr. Vogel at Shands Hospital, Gainesville, Florida. I'm doing very well! Don't hesitate to email me if you have any questions about the surgery or recovery period.
Lynne Mansfield <lmansfie@xtalwind.net>
Crystal River, FL USA -

Had j-pouch procedure done early 1998 at Cleveland Clinic. Currently experience complications of dehydration & weight loss. Looking to speak with other people experiencing similar complications.
Richard Broo <RBroo64133@aol.com>
Commerce Twp., MI USA -

Just wanted to let everyone that enters this guest book to know that my 1st surgery went wonderfully! 12 hours and an extra foot of large bowel were surprises, but I am feeling better than I did before the surgery. (And I thought everyone who said that was pulling my leg!) I am 2 weeks post-op and aside from being low in strength am high on health! This surgery does work. For anyone in the West that needs a good doc, my surgeon was Merrill Dayton at the University of Utah. He is very precise and does a wonderful job! If you would like to e-mail me feel free to do so. -Best of Health to all! -Erlyn Barlocker
Erlyn Barlocker <bradb@burgoyne.com>
Riverton, Utah USA -

Well, I promised myself I would submit another entry into this guestbook after I had surgery for UC. For clarity, I'm 19 yrs. old, a college student at the University of Texas in Austin, and a sufferer from UC for, i guess it's going on 4 or 4 1/2 yrs. now...I stopped keeping track. I'm very active with soccer, ice hockey, working out and anything else that gets me out and doing something. That just made my decision to have surgery harder because I had this idea that I would have to give that all up. I've only undergone the first step and will get the second in two days. It's been a pretty rocky road, but not an impossible one. I understand, of course, that my case is not exemplary of all the hardships others must encounter with their surgeries. I've had relatively few complications...except for this one bowel obstruction which required me to take little trip to the E.R.. But I just wanted to serve as a sort of "light at the end of the tunnel" to those considering surgery. I know that before I got my surgery, i researched and read a lot of entries from people who had had horrible complications. In seemed that those were the only stories I saw. But I want people to read my entry and feel confident that they are making the right decision. I haven't had the second surgery yet, but even with this bag on my side, I feel better than before because I'm off all the drugs. Before now, I had been on relatively high dosages of steroids and anti-inflammatories for 3 1/2 years and really high immunosuppressants for about a year. I'm not saying all this has been easy...in fact it has been really hard;not just on me but my friends and family. But from what I've experienced and what I've seen from others going through this, it's the hard times like this that brings out the best in people and in the end it is worth it. So for those considering surgery, be scared and worried and concerned and all the terrible feelings you're experiencing...they're all normal and in the words of my doctor, "...I'd be worried if you weren't having them...". But do not be dissuaded from making the right decision for yourself. If surgery is the best option for you, and you know if it is, then use me as a sort of inspiration if that's what you want to call it. Complications can arise, I won't lie. For those who have had those complications arise, my strength is with you. But they really are the rarity. Doctors nowadays have done such a wonderful job of perfecting this operation, that many of the formerly common complications are almost nil. So good luck and a speedy recovery to you. Also, anyone should feel free to e-mail me with questions, comments, or anything else they might need. I'm here.
Greg Hagemann <solid_ice36@mail.utexas.edu>
Austin, TX USA -

Im 28, as active as I can be. I've had UC (pancolitis)for 2 years now, surgery (J-Pouch) soon to be scheduled. If theres ne1 who'll be doing the same...feel free to e-mail me...I'll answer ne questions during entire process...I know I had a ton of questions that many have responded to...thanks!
Mick rodriguez <dhdcf@janrix.com>
Fayetteville , nc USA -

I was diagnosed with UC, in Feb.1995...after 19 months of continuous treatment, I had the "Brooke Illeostomy" in Oct.96...Having difficulty with the appliances, and low self esteem I found out about the BCIR (Continent Illeostomy)...I had the surgery at the Lutheran Medical Center in St.Louis, MO. in Jun. 97. The "J-Pouch" option was not made available to me at the time of my second surgery...I'm very happy with my new "Continent" Illeostomy (no messy appliances, smells, bulges ect...)but would like to know more about the "J-Pouch" If anyone would like to chat, send me an E-Mail! As far as I know, there is no web site like this for the BCIR, still would like to make some new friends, Ulcerative Colitis is a nasty ordeal, I'm glad it's over, and to help anyone who could use it!
David T. Boss <dbossman@worldnet.att.net>
Harrison Twp, MI USA -

CAN ANYONE PLEASE TELL ME OF DIET PROGRAMS ASSOCIATED WITH U.C? I AM JUST COMING OFF OF A WEEK'S HOSPITAL STAY FOR TREATMENT. THANK YOU. ROD BRECHEISEN
ROD BRECHEISEN <rebgolf@pinehurst.net>
PINEHURST, NC USA -

I was delighted to find this site...I am one of the "old-timers", in that I have had the j-pouch since 1984; had it for ulcerative colitis, after having an ileostomy for 6 years, while deciding what option to take. I did very well for about 2 years after the closure, then began having problems with pouchitis, that have been, virtually, on-going since, though, for the past 5 months or so, I have done better than I have in years, for some unknown reason. I, too, have the 'usual' problems of leakage, that just burns the perianal area up; I have found that wearing a panty liner, at all times, will protect my clothing, and using A & D Ointment on the excorciated skin helps. Being a nurse, I am on my feet most of the day (I work in a Recovery Room), and I have noticed that if I am more tired than usual, I tend to have problems with incontinence at night, too. I wondered if anyone else experienced this. Also, over the past couple of years, I have began developing absorption problems...don't seem to absorb most of my meds (and I am on a ton of them...all of the 'old' UC drugs, among others). Here again, has anyone done this? I have recently began using Calcitonin nasal spray (for calcium loss from my bones...thank you, prednisone!!), along with Fosamax, which is absorbed in the stomach, to increase the bone density, hopefully, and reduce further loss of calcium from my bones. Anyway,again, let me say how delighted I am for this web page! Thanks! cthardyrn@aol.com
Colleen <cthardyrn@aol.com>
Headland, AL USA -

i was in 7th heaven when i discovered this site!!!! thiis is a vital link to much medical information for me.you know what they say-if you want someone who knows the nitty gritty details about the really important stuff of a medical problem dont ask the doctor,ask the nurses and people who have that same medical situation.my problem is simuliar to everyboby elses on this site i have had the ileo anal anastomosis op parts 1and 2-and i can honestly say i was never so glad to have an op done as when i had the Closure!!!! i have Gardners Syndrome- FAMILIAL ADENATOMOUS Polyposis type 3-this is a rare genetic disorder which affects the entire G.I. tract and the Endocrine system lead to lots to interesting tumors in lots of interesting inconvient places.my problem at present post opsuurgery pt2 done june 5 1998 is trying to regain the lost pounds which has left me far too thin.i weigh 83 lbs and i am5 ft half inch tall. any suggestions out therte on solving this. i should mention i had to have over half of my stomach removeddue to polyps-LOTS of them so this adds to the problem. i am also like every one else having the leakage-my solution has beeen to wear belted kotex and use Desitin when my bum gets sore but i liked the suggestion about using mylanta for perianal irritation. any suggestions on these hassle is appreciated-esp on how to solve the cranky gut which causes loss weight, leakage and the runs!!!thank you.
lisa witham <moonstar2@webtv.net>
mentor, oh USA -

Hi I'm very gland I found this site not to long ago. It has helped me tremendously. I had my j-pouch done (one step) in March of 97. This was not due to Uc but because of Colon-Rectal Cancer. I had no choice it was this or death. I had my surgery done at Memorial Sloan Kettering in New York City, my surgeons name is Dr. Jose Guillem. The surger I had was called a Low anterior resection, J-Pouch, and coloanal anastomosis. This was is connection with receiving cemo and radiation and one year of cemo after. Even though I didn't have UC all that I have read on this site has been helpful..I also suffer from Short Bowel Syndrome due to radiation damage they had to resection my small bowels and take about 8 inches or so. My surgeon and his staff have been great and very helpful but in the day to day life I have been able to find answers here. My J-Pouch works just great 3-5 Bowels movements on a good day, everyday I find I can add more things to my diet. I've gained 5-10 lbs, woek a full time job and live life. I have never had pouchitis, my bottom never got that sore. I was back to work 3 weeks after surgery. I went back to work 3 weeks after my small bowel surgery also. I won't say that it was easy, but everyday gets better and better. I told everyone one day I would eat a slice of pizza and today I DID IT. I haven't had to run to the bathroom either. I sleep through most nights. If I can help anyone, please Email me. Keep a positive attitude, I find it very helpful also a sense of humor works when all else fails.
Arlene Budesa <pickles@ulster.net>
Saugerties, NY USA -

I had the second part of the J pouch operation about a month ago and today I am doing fine. Every day without the illeo- thing is a blessing. My story is very much like many who have posted here. Although not perfect, I consider the J pouch a minor manageable inconvenience, and way more better than life with UC or an illeostomy. My surgeon was the best and the hospital staff were great. If anyone wants advice or the lowdown on life without a colon and with a J pouch, feel free to write to me. Good luck to all colonless people and soon-to-be pouchers. Andy (andyc@igs.net)
Andy Cowan <andyc@igs.net>
Kanata, On Canada -

I just found this website; what a great help it has been
Michael Loewy <Mike_Loewy@fclass.hilliard.k12.oh.us>
Hilliard, OH USA -

Thank you all for sharing your experiences. I have been dating a gentleman who has had colitis and then the surgery. All that you have shared helps me to understand what he has gone through in the past and what I can expect in the future. Again thank you very much. Tara
Tara Clintsman <savril@hotmail.com>
Mankato, mn USA -

I am a 45 year old high school principal who had my initial surgery last October and my reversal surgery on December 29. I am really struggling with frequency and urges. I am currently taking Immodium, Lamodil and Opium with mixed success. I have good days and many bad days. Any suggestions?
Michael Loewy <Mike_Loewy@fclass.hilliard.k12.oh.us>
Hilliard, OH USA -

I,too, have chronic pouchitis. Presently I am taking Clindamycin. Flagyl didn't work for me. Cipro worked, but I became allergic to it. So far, after 8 days of clindamycin, I am doing well and haven't developed anymore strange rashes.
Vicki Armentrout <travellr@erols.com>
Mechanicsville, VA USA -

HELLO I AM 32 YEARS OLD AND HAD ULCERATIVE COLITIS FOR ABOUT 17 YEARS. ON FEBUARY 6 1998, I HAD THE J-POUCH SURGERY. I HAD AN ILEOSTEMY BAG FOR ABOUT THREE MONTHS. ON MAY 18 1998, I HAD THE SECOND PART OF THE SURGERY AND HAD THE BAG REMOVED. I AM DOING OK RIGHT NOW. I AM MARRIED WITH TWO CHILDREN AND I AM CURRENTLY WORKING AS A POLICE OFFICER.
Victor E Legaspi Jr. <vlegaspi@calexico.k12.ca.us>
El Centro, Ca USA -

I am sorry I never returned anyones e-mail. Life has had many ups and downs. Oct. 30 of this year will mark 3 years since final j-pouch surgrey. Since then I have had many cysts on different parts of my body. The doctors say it is because of the uclertive colitis being an autoimmune disease. Currently I am having a very painful flare-up from a past surgrey. About 20 months ago I had out patient surgrey for the removal of a polyp. The surgreon put in a drain. She never said how long the drain needed to be in place. It became so uncomfortable. My mom trimmed some of the drain as it was being pushed out as it was healing. I called the doctor a number of times describing what was happening but she never wanted to see me. The drainage tube started turning up and the ended started poking a hole into me. It created a new and very painful hole! I pulled the drain out. It was about an inch long. Because of this new hole, all of this was just on the outside of the rectum, I went to a plastic surgeon who takes care of wounds. He fixed it, but will always be a weak spot. It is now weak and very painful causeing the spot to be opened, infected and is now abscessed! I have to go for surgrey tomorrow to have the abscess removed. Has anyone had similar problems or getting cysts? I also have stool leakage into the vagina and have so much scare tissue that I can't have a pap smear or an internal examine. The drain for the polyp went into the vaginal wall through to the rectal wall causing the leakage and adhesions. Please anyone reading this tonight and can help, e-mail me! Thanks, God bless you all! scott@apci.net
Jennifer Scott <scottm@apci.net>
Belleville, Il USA -

HELLO I AM 32 YEARS OLD AND HAD ULCERATIVE COLITIS FOR ABOUT 17 YEARS. ON FEBUARY 6 1998, I HAD THE J-POUCH SURGERY. I HAD AN ILEOSTEMY BAG FOR ABOUT 3 MONTHS. ON MAY 18 1998, I HAD THE SECOND PART OF THE SURGERY AND HAD THE BAG REMOVED. I AM DOING OK RIGHT NOW. I AM MARRIED WITH TWO CHILDREN AND I AM CURRENTLY WORKING AS A POLICE OFFICER.
Victor E Legaspi Jr. <vlegaspi@calexico.k12.ca.us>
El Centro, Ca USA - 

Having gone to a GI after experiencing irregular bowel movements in mid '96, 3 months of tests finally determined I had UC and biopsies found dysplasia. I had the fortune of never having 'suffered' from UC, but to head off cancer, a total proctocolectomy was recommended. Jan 97, I underwent surgery, and went home with a J pouch and a temporary ileostomy. 4 months later the stoma was closed, and pouch put into function. Aside from extra bowel movements, I have been returned to a totally normal existence. I eat what I want, and no longer take any drugs. I work as hard in my construction job as I did before my surgery, and I participate in any other activities I desire, softball, bowling, golf, etc. I have found that increasing my liquid intake (lots of gatorade) allows me extra energy and stamina I did not have after the surgery. I also believe being 'in shape' before my surgery helped me regain my lifestyle faster. Had I not, I believe it would have taken me a year to get where I wanted to be, rather than a month. Good experiences: The Cleveland Clinic and Dr. Fazio. Couldnt expect better from a hospital staff. Bad experiences: Because of my active lifestyle, the 'bag' was a thousand pound ball and chain. The day of surgery to close the stoma was the happiest day of my life (sorry honey, and kids). Found Lomotil drug was cause of severe enough headaches to go to ER several times. No recurrances since discontinuing its use. Questions or support? Feel free to Email me... good luck, may you enjoy at least as much success as I have!
Vince Weaver <vweaver@michianatoday.com>
Elkhart, IN USA -

I had a similiar surgery at UCLA. It is basically the same surgery but is called endorectal ileal pullthrough operation. I had the pull through in Dec '96 but then had a fistula that had to be corrected. Since the fistula correction a deep grove formed between my vagina and rectum and fecal matter leaks into the vaginal area. Although the operation was successful the leakage makes it necessary for me to wear a pad at all times. I have some good parts of days but am still living half a life because it is always a concern that matter will gush out. When this happens the whole area becomes very imflamed and it is miserable! Sex life? Forget it! I am constantly worried about fecal leakage. I try not to dwell on it but it is very depressing/. I'm a first grade teacher and now that it's summer I am going to go on a very strict diet and eliminate any foods that seem to be a problem. I absolutely don't want to go back to a colostomy bag but I am really discouraged about the situation as it is. Is there anyone who has had a similiar experience and found ways to make life worth living again? I really need some help!
Elaine Green <etgkgg@aol.com>
USA -

MY HUSBAND HAD J-POUCH SUGERY COMPLETED? IN OCT. 1998FO FAMILIAR POLYPOSIS, I HAVE ONLY NOW DISCOVERED THIS SITE (WONDERFUL) ANYONE WE THE FAMILIAR POLYPOSISPOUCH HELP IS NEEDD HE IS NOT HANDLING IT WELL. I,HE,WE NEED INFORMATION. DOES IT GET BETTER?
JUNIE <jms35@globaleyes.net>
murphysboro, il USA -

hi my name is Gitte, I am a 27 year old girl. I am staying in Seaside, Oregon for the summer. I have had the j-pouch for 8 months. And are doing ok. I think this is a great site, wish I had found it sooner. I would like to hear from someone who has also had a j-pouch performed.
Gitte Stormly <stormly@vip.cybercity.dk>
copenhagen, Denmark -

Found this website tonight. What a blessing! Thank you so much to everyone who makes it possible. You are making an invaluable contribution to so many people's lives! I don't know anyone with IBD and, though I have an amazing support network of family and friends, it's wonderful to hear true empathy. I am concerned, though, about the recurring theme in the messgaes I've read from people who are experiencing horrible problems with their j-pouches and are wishing they'd stuck with ileostomies. I'm scheduled to have part 2 surgery in less than a month and have been taking somewhat of a leap of faith in deciding to go ahead with the surgery. I had a total colectomy last fall after only 3 flare-ups in my whole life. My case was unusual - no meds between flare-ups, no worrying about finding bathrooms in public places, and basically good health, including an easy pregnancy, in those 3 years. Then last fall became horribly ill and had emergency colectomy. Diagnosis: "IBD of Unknown Origin." Doctor feels "optimistic" that it was UC but can't guarantee, so my step 2 surgery is a gamble. Went to get another opinion and that surgeon said my quality of life is good now, why would anyone want to do the j-pouch with all of the potential problems. I've been feeling confident about my decision up until this weekend when I started reading messages on this site and CCFA's. I really appreciate how people have shared so bravely and candidly and I am trying to learn from what they have said. But I'm suddenly very nervous about the next surgery and wonder if I should believe my surgeon (who I like) or the experience of all these different people (who are the ones really dealing with the problems)? Also, how do you keep working during the first year after j-pouch connection? I'm planning on taking 6-8 weeks off, which is not good timing for my employer but I want to make sure I'm well when I return. Now I'm reading it could take a year? On another note, what about taking supplements? I've heard good things about chlorophyll, aloe vera, cod liver oil, and garlic tablets. Does anyone have experience with these "alternatives"? Thanks for listening. Wishing you all good health!
Andie <ecope@pacbell.net>
USA -

Hello! I just found this site (Thank God)! I have had UC (40 yrs.) since I was 16 and because of the high cancer risk and 2.5 year flare-up I will be having surgery (J-Pouch) on June 15, 1998. I had a 15 year remission until three years ago when I quit smoking. Two previous times when I quit smoking I would get flare-ups. I am scared to death about having this surgery especially after reading other negative stories on other websites. I feel so much better, mentally, reading about your experiences. You all have so much courage! May God bless you and keep you all well. Thank you.
Susan Jocis <SJocis@aol.com>
Stratford, CT USA -

Hi I'm a 15 year old male and was diagnosed with UC 2 and a half years ago. My specialist believes that it is time for surgery as no other medication seems to be working. Is there anyone else out there who is about my age and has UC and has had or is about to have the J-pouch operation.
Ryan Evetts <r.evetts@clear.net.nz>
New Plymouth, New Zealand -

Hi it was nice to find this web site on 6/2/98. I thought I had it rough but after reading some of yours mine become a small proublem. Some time in 1991 I received UC. Went on sulpha pills things cleard up I tryed to get off the pills but a flare up told me differt. Over the years of sweezing and trying to find a rest room or deserted woods to go. The flares seem to be around the stress in my life as if you can avoid some them. In 1/1/97 I got laid off from work, in Vermont this is not a good time of not having a job. The bills no insurance. My UC. went to down and never was able to get it under control again we (Gastroenterologist)tryed evey thing maxing doses he'd give me all kinds free supplys of anama's. He was just great he'd see me after hours so the hospital wouldn't charge me any thing. But after 10/24/97 he looked me in the ones and said you need this surgey. At that time I had a Fisher (rip in the rectum) didn't tell him because I thought the pain was from hemroids, and thought they would go away, but the pain was geting worse. Two weeks passed called my Dr. he was on vacation for a month, two more weeks pass by now I researched this J-Pouch and said ok to do it. On 11/22/97 was put in the hospital, because of the Fisher in the rectum it was to be done in 3 stages. But I was serprised how good I felt just 4 weeks after 1st sergery. The second one My wound opened up 4" below the beley button that was cut in halh the bag wouldn't stay on either. The 3rd one was 3weeks ago today and doing ok but when I came home the cramping was pretty bad. I did second guess myself that maybe the bag wasn't that bad after all. The Dr ordered me some valuim5mg I used them for 5 days the cramps are still there just not as bad as they were when after operation. I am going to bathroom about 9-12 times a day, down from 15-18. My but was some sure and the bagbom worked for me, the only thing it leaves a greas stain on your short and to my pants so I just placed two pcs. of tissue between the cheeks. Going for my follow up on 6/22/98 then if I'm still going alot he'll have tke something for it slow down. Again it truely made my day when finding this site. reading about the guy who called himself the "bagman" you do have to have a sense of humor, it made me laugh so hard. If anyone wanted e-mail me that would be just great. I'm 38 and feeling great.TAKE CARE ALL WHO READ THIS AND THANK GOD FOR THIS SITE. KEVIN GOBIN--Kmgobin@aol.com
Kevin Gobin <kmgobin@aol.com>
Asctney, Vt. USA -

Just had second part of j-pouch on 1/12/98. Love the surgery and love this page. Thanks for banding together to help each other!!
Vani Katta <kattav@vrinet.com>
San Antonio, TX USA -

I've just found this site - and I'm so glad that there are so many other people out there who have undergone iliostomy's and found them to be the best thing they ever did. In my case I started bleeding 3 years ago (age 30) and was told by my G.P. that I had piles (If only!!). This situation got worse until I was admitted into hospital in September 1996 with suspected Crohns disease. 10 days later I was discharged but was readmitted again 2 weeks after when my bowel ruptured. Fortunately the only thing I remembered was waking up in hospital some 7 days later to be told that I had had my bowel removed. Since then I have gone from strength to strength. My wife became pregnant again and I subsequently underwent the reversal in August 1997 although this was not successful however I am not in any way dispondant and am happy to be a "Bagman" Stick in there everybody - iliostomists of the world unite !! Please feel free to email me if you want to chat
Stuart Gibb <stugibb@clara.net>
Edinburgh, UK -

I just found this tonight, I think it is wonderful and refreshing. My mother was diagnosised with colon CA about 7 years ago, and has been fighting it since, she has had 3 operations so far, and is on her forth. She has an illeostomy, and is getting ready to have a ostomy put in on Thursday, so she will then have two. We didn't even know she had it again, we went for a stent replacement and they told me. Devistation. Feel free to e mail me if you like, christylin217@yahoo.com
Christy <christylin217@yahoo.com>
Hollywood, md USA -

Hi...Just wanted to share some "good news" with everyone out there who is suffering through this ordeal: I just got back from my honeymoon in Key West, FL where my new hubbie & I went snorkeling & swimming & boating, etc. My pouch was not a problem at all. If you find my old guestbook entries, you'll know that I had my 1st surgery last March, a mere ten weeks after being diagnosed with UC. I had to cancel my original wedding date and thought I would never feel healthy or happy enough to get married. I put on that big white wedding dress at 10 a.m. and, with the help of a few imodium, didn't even THINK about the bathroom until 5 p.m. When I first had my pouch installed I never thought I would have that much control or confidence. So, just thought you'd like to hear a positive note.....things DO get better!
Megan Hartman <megan.hartman@mci.com>
Fairfax, VA USA -

Wonderful site. Already I have sent & received EMail. Just ready a great book that i recommend to everyone - Alive & Kicking by Rolf Benirtschke. My son, 21, will have surgery this summer and I'm trying to help find any support possible. Believe it or not, in the whole big city of TAMPA I haven't found a support group made up of young people...would appreciate hearing from anyone in the area. Also, having to make a decision on surgeon and appreciate the comments received to date.
L.Friday <drfriday@gte.net>
Brandon, Fl USA -

just got access to the net at work and found this site...great!! i was diagnosed with uc in may of '96, and after a hellsih year of every med possible-including immuran- had to have surgery in may of '97. in a couple weeks, i'm going in for "pouch advancement". i'm having a lot of trouble emptying, and chronic inflammation, pain, and bleeding. plan is to (hopefully) be able to remove about 3 inches below the pouch (the problem area)... i'm a bit nervous, though this should be no big deal compaired to my first surgery last may! anyone with similar problems? would like to hear your results.
krista geis <none>
northampton, ma USA -

Hi like many of you just found this site, I suffered from UC for 14 years. Until i had a J pouch fitted. At first I was going to have it done all in one operation, but when i woke after the OP in July 95 I had an ilostomy. This was done because when they removed my large bowel, the colitus was on the tissue between my front and back passage this was cut away. So they thought it might perforate. Which it did. I new i would wake up in the ICU, as I was told that this was normal practice to have one day in there. I did'nt wake up for 4 days. Then I had to learn about eliostomies as I was'nt going to have one. Warrington hospital where I was treated for UC and where I had the OPs could'nt have done more. After coming out of ICU and having everything explained, like I always did I just got on with things. Like most people who have suffered with UC you learn to take the bad and make the most of it. First day out of ICU and the physio walked me round the bed. All through my illness and different visits to hospital I was never a patient who could not help themselves. So when after the OP I could not do thing like wash of bath, I got so frustrated. I did try but soon found out I could'nt. I stared to go to the toilet on my own the first day out of ICU. I;d been walked round my bed so I throught that was my Q to get up. As the next few days went by I was'nt getting any better,and was told to take things easy. The days passed and I was getting weaker and weaker. Walking to the toilet 15 feet away was like walking for miles. After nearly colapsing one day was ordered to stay in bed. Sitting up to eat got to much, I would sweat and feel breathless. No one could find out what was wrong. I had chest Xrays, and my heart monitored, still nothing. Six weeks after the op they decided that it was a fluid problem, even though i did'nt test dehydrated. For every 3 litres put in i lost 4 litres. They treated me with a drug which I can not remember the name of, this drug was given by injection into the stomach. It helped the body take in fluid. I got stronger and went home. While this was going on I was also dealing with a hole between my front and back passage, which mucus whould flood through. As the pouch was not being used yet It would fill up with this mucus. The easist way for this to escape was through the hole and out the front. This meant I had to use sanitary towels for 12 months (30-40 a week). I started to have pains in my back and was rushed into hospital, the next day I had my gallblader removed. This to I had problems with, got over the OP OK but then started with the back pain again. This proved a problem as my chemicals in my body where going wrong. I had to have a liver biopsy. Things got better and after a few weeks went home. Three months later went back in to have the hole repaired and the pouch resituated. Then 3 months after that had the eliostomy reversed. All these OPs took place over 14 months with long stays in hospital. This might sound as if I'm complaining, but I'm not. It's now 2 1/2 years since my last OP and I work P/T. The only problem I have Is a raw and bleeding anus. I have fiber gel twice a day and take codenfosphate four times a day. These reduce the trips to the loo, but I can not stop this soreness, the docters and surgeon have tried everythink and now say it might improve in time. If anyone has found any cure for this problem, I would love to know. One last point, keep a sence of humour or as all UC suffers know you can not survive without one. Julie.
Julie <Julie@heatherbank.demon.co.uk>
England -

I want to thank everyone that takes the time to write about their experiences...even though it can be embarrassing (writing is more embarrassing that having a scope?)...anyway, thanks to all of your stories, I am looking forward to my j-pouch operation on 6-15-98 and am hoping that I can get on with life and still enjoy my seven children while they are still young! I am a UC "sufferer" for 17+ years with the classic "I can take this medicine and get through the day" mentality. Finally my husband commented that my side of the bed looks like a pharmacy...which it does. My father is also a UC sufferer for 21 years, and thanks to this forum is going back to his doc to get scoped. (He is from the old school when all they had were illeostomies and has been scared to death that he would have to have one.) So now, instead of being hell-bent against my surgery he is finally supporting me because of this website. My thanks to the sysop and everyone that adds to this site. May God bless each one of you for how you have helped me. -Erlyn
Erlyn Barlocker <bradb@burgoyne.com>
Riverton, Utah USA -

I had this surgery 13 years ago in 85, and since then have been loving life. With a family history of colon cancer the idea of it scared me, it still does if I think about it too much :-), I am happy to say that with the occassional case of pouchites, nothing is stopping me from doing anything I want. Thanks Dr. Beart, and all the nurses at the Mayo clinic, you saved my life :-)
Dave Cupp
Columbus, OH USA -

I had continent ileostomy (now called a "J pouch," as I understand) 20 years ago. Pouchitis soon appeared, not too bad at first but it has become almost intolerable over the years. Lots of pain, even on a very restricted diet. I had the pouch scoped; doctor said it was ulcerated and inflamed. The pouch is also incontinent, so I wear a conventional bag. Flagyl, metamucil, ammodium, etc., haven't really worked. Cipro works great, but only temporarily, and I am afraid of the long-term side-effects of sustained antibiotic treatment. Would like to avoid surgery if (or as long as) possible. Does anyone have any other advice to help deal with the pouchitis? Thanks. E-mail: hutton@alpha.fdu.edu. Posted May 14, 1998.
J. Hutton <hutton@alpha.fdu.edu>
Hackensack, NJ USA -

Hi! I was writing because I have recently gone through the toughest year of my life. Last August at 19 years old, I was diagnosed with colon cancer and told that I would need to get it out ASAP. At first a permant ileostomy was what was suggested, but with persitance we found there were other options out there. I did research on all of them with pros and cons. After looking at all of my possibilities my family and I decided that going with a J-pouch was the best solution, with me being so young. This was basically because it was more cosmetically exceptable. I honestly though would of gone my life with the ileostomy if I had to. Well, even with the J-Pouch, part of your small intestine and make a bag out of it (internal bag opposed to the external bag) I was going to have an ileostomy for a while for the pouch to heal and so that during chemo it would be easier on me. This was hard to take, but it was that or my life, so I thought of it as a gift rather than a sacrifice. Well, they successfully took out all the cancer, but wanted me to take 6 months of chemo just incase. This forced me to take a year away from my college to be closer to doctors, I did inrole in some classes though at the local college. I was able to live a normal life while on chemo. I think I was one of the lucky ones and didn't not suffer too much of those bad side-effects. A little nausea here and there, but pills took care of that. I guess my main dillema was the gaining of weight.. but hopefully with time I'll be back to myself. Well, I finished my chemo in Feb. and last week had my second operation to get the J-pouch working. All is going pretty good, just a little uncomfortabke, hope this is normal!?!??!!? I think that I could be a help to others that are possible going through some rough times and of course could take some advice from those of you that remember how it was just starting out with the j-pouch. E-mail me in any case. I'm really glad I found this sight, it's great support, good to see you are not the only one out there going through this. Thanks!!!
Jennifer <JLG5045@aol.com>
MA/FL, USA -

Great site! I am a male, 33yrs old and was diagnosed for Primary Sclerosing Cholangitis (PSC) and UC in Nov. 96. Mine problems have been few apart from often visit at the bathroom .In summer 97,when I have to go to toilet 15 - 20 times every day, the holiday was rather laborious. Except for this problem I have been in good shape. For the UC the Prednesone gave some improvement but none recovery. Drugs like pentasa and dipentum seems to have none effect. But after the first prenison treatment my liver value from blood test become normal and have stay normal since My doctor witch is among other thing a specialist in PSC have never heard about so good results, I obvious hope the value will stay normal. In Nov 97 my doctor (which I am very satisfied with) do a thorough investigation in my colon. It was total colitt and in the upper part of the colon the biopsi sown some dysplasi. Due to this investigation my doctor advised me for surgery. In Norway almost all the hospital is publicly and the usually way to make ileo-anal pouch surgery is in two steps. The first steps was performed in Feb.98 and the second step will be in late May 98. At present I have therefore temporary an iliostomy. I thought an iliostomy will make a lot of problems in the everyday life but my experience have indicate that I can do roughly speaking the same as I did before. At this time I play football (US = soccer) for instance. So if the j-punch do not function I know that I can have a normal life with iliostomy, but the surgeons have given me good odds that the j-punch will work.
Lars Lodgaard <larslod@lemmus.mnfak.unit.no>
Trondheim, Norway -

Great to find a site like this, am a twenty eight year old and suffered with UC for almost 8 yrs. before a perforation led me close to death and an ileostomy. Am now doing fine but want to consider ileo anal anastomosis in the Cleveland Clinic Foundation, Ohio. Would like information from anyone who has been through this surgery recently on both financial and medical implications of such a procedure. Thanks - Aliyah
Aliyah Asghar <HOURGLAS@HOTMAIL.COM>
BOMBAY, MAHARASHTRA INDIA -

hey. I am a 20 year old, male, virginia tech student. I have severe UC and have done every med out there for 4 years now and lots of pred. I have made the decision to get a j-pouch and I will be getting the first part done in about 3 weeks. I have done my research but if anyone one has advice, I'm listening. thanks.
James Ringler <ringler@juno.com>
newport news, va USA -

hello,i now have had the j pouch for five months and am not really feeling as good as i did with the illieostomy.After the first operation i threw myself back into life and found it exceptionally easy to stack the weight back on.I was feeling strong due to the style of work I was doing which was labouring for a timber factory.A few awkward sitiations occured when I was out on site like the bag breaking or failing to withstand the phisical stress i was putting it through.It made me really angry when the bag broke , i was lucky to have an understanding crew that were all friends and sympathised and not laughed.I also woke up in the middle of the night to find myself rolling around in my own filth which sort made a bad start to any day!!!!So the illieostomy had its good points and its bad points but i am very glad to be able to operate like people who still have their colons in tact.I think it will be a little longer before I am totally fit and healthy again but My family have been my life support,without them this would have been almost impossible for me to conquer.Now i feel as though nothing can stand on top of me ,nothing can touch me or upset me. Thanks mum,dad and mel for all their support.
geoff <Rhonda_Kevern@bigpond.com>
brisbane, qld australia -

Thank you to everyone for your comments. Reading them has helped me to feel very positive. My son is 22 and had J-pouch surgery in 12/97. His body is still learning to use it's new system and we are still learning what foods work and what don't. He is in a bit of trouble at the moment with what the doctors think is pouchitis - hopefully the anti-biotics will do their job. He is our hero as are all of you in this book.
Rhonda Kevern <Rhonda_Kevern@bigpond.com>
Australia -

Great site! Keep up the good work! 13 years ago when I was diagnosed nothing like this existed. It is a great help. Thanks, -Rebecca
Rebecca Leebow <rleebow@gcctech.com>
Wilmington, MA USA -

Hi -- just found this site tonight and like others, wish I had found it sooner. I had 1-step surgery in Feb 96. I have suffered from many of the complications discussed here, but still can't get over how much better I feel. I have spent a lot of time saying "I didn't think I could feel better than last month, but I do." I was resistant to the surgery, sure that there was some option I hadn't explored or some simple solution that no one noticed. It has taken a long time to get here- but I'm glad for it. I am definitely a better person for what I have experienced. Best of luck t o all of us -- remember - we are pretty amazing people!
KerryD
MA USA -

Have a son scheduled for JPouch surgery May 21 at Un. of Tex Health Science Center. Would love to hear from some young males who have had this surgery and what their experiences are with post op. Need to know how best to support him and not be a bother to him. Also, indelicate, but would like to hear from some young men about the return of sexual functions -- lots of scary things about the possibility of impotence, etc. Would appreciate any suggestions to help my son get thru this and to help me be a good mother, be as supportive as possible and not get on his nerves. Tell me what are the things I can avoid that get on the nerves during this time and how I can help the most.
susan hagemann <kylemore@flash.net>
Conroe, tx USA -

Hi - obtained your web address through my IAP support group, and am very impressed with the stories and advice available. I am 29 year old, and suffered with UC for about 10 years. I was a "smolderer", where my symptoms would never completely remit, but just waver from bad to worse! A classic "survivor syndrome", I refused to give in and admit how sick I was, and relied heavily on medications to keep me on my feet. Eventually, the drugs lost effectiveness, and the side effects became very severe. The AZT and cyclosporin had basically shut down my immune system, and the prednisone had reduced my bone density to that of an 80 year old. I was in danger of shattering a bone from the smallest of falls. In March to April of 1997, my UC flared up violently, and the pain would reduce me to crawling from toilet to tub. I was booked for emergency surgery, and having already discussed it with my GI, I began the 2-stage colectomy-ileostomy, ileoanal anastamosis procedure. The first sugery hit me like a truck, and was rife with complications ranging from severe fever and infection due to abcessing, severe adverse reactions to pain medications, to liver and pancreatic inflammation and total GI shutdown (including TPN rejection). After 7 weeks in the hospital (after a blood transfusion or two), I was released, a proverbial 98 pound weakling (I am 6 feet tall, and had weighed 160 lbs). The ostomy drove me nuts, but once my bowel began functioning, and I could actually eat pain free, I began to feel much better, both mentally and physically. After a summer of intense physical rehab, I had the reversal or closure procedure in September of 1997. Returning to the hospital terrified me, but the thought of getting rid of my ostomy bag strengthened my resolve. Again, a few complications caused some worry, but after 10 days I was at home. I convalesced until January, surprised at how weak I was from the whole ordeal(s)! Again, a rehab program helped with strength gains, and re-establishing a sense of well being. I started a new job in January, as the boredom of too much free time began to irritate both myself and my wife. I never really had too many problems with excess bowel movements, but cramps could bring me to my knees. I also had (and am still having) problems with perianal skin irritation, hemmoroids, and possibly a carry over of a rectal fissure from before the surgeries - any advise would be greatly appreciated. It has been a year now since the first surgery, and I am just staring to feel really good, but indescribably better than I was living with UC. I am on a regular weight lifting and exercise program, and am enjoying rebuilding my body. The osteropenia is still a problem, but should improve. I take Immodium as required to help me through the day and night, and combined with Metamucil, I can reduce my toilet trips to 3-4 per day, and enjoy a full 8 hrs sleep! I am not gloating here, as I am still trying to figure out what foods I can and cannot eat, as the "wrong choice" will have me in the bathroom all day with diarrhea. The cramping has faded, but still the odd bad bout (Oh-if only I could break wind without fearing a wet suprise, as it feels so good when I can safely fart and release the pressure build up that causes the pain). My J-pouch has expanded to the point where, with careful attention to diet and meal timing, I can go up to 8-12 hours without a "pouch purge". My personal (I have found through discussions at our support group that everyone reacts a little differently to foods) banned food list, dicovered through trial and error, includes: onions, chocolate, beer, wine, ...still experimenting! As I am trying to gain weight, I have been loading up on fatty foods, but after reading other's comments on adverse reactions to greasy food, I will try to cut down and see if this helps. With calcium supplements and a bone rebuilding drug ("Fosamax"), as well as continued diligence with diet and physical training, I hope to return as a competitive athlete in a year or so, looking for sponsors who will take a chance (my previous sponsors dropped me, obviously, when I could no longer perform or instruct at a high level). Despite the problems, I never regret the surgery, and strongly recommend it to any UC sufferers, especially those who are taking prednisone or like steroids - don't risk the deterioration of your body for temporary relief of this chronic disease. My quality of life is much better - sex life is fine, thinking about returning to university to complete grad studies, and as mentioned, preparing to return to a high level of physical activity. I will keep in contact with this web site, as it is both a great information and inspiration source. Bjorn
Bjorn Taylor <cca@xcountry.sport.ab.ca>
Edmonton, AB CANADA -

Thanks for all the e-mails and messages in response to my stricture questions. Just got back from 4 nites at Mayo Clinic - NOT what I had planned on happening. Turned out to be a stricture which led to bowel obstruction - fixing the stricture was no big problem - getting my bowels working was and still is. Seems strange to be having this problem! Overall I count myself very blessed. I never had any pain - still don't and I'm sure it will be fine again in no time and I can continue feeling GREAT all the time!!
Cheri <ewoldnbc@netins.net>
IA USA -

I am now 35 years old and was diagnosed with UC at the age of 27. My symptoms are not as severe as several of yours - however, mine do seem related more to stress and what I eat. Due to all of the medicine that I've had to take (various steroids and currently am on Asacol), I find it very difficult to lose weight and was wondering if anyone had any recommendations on a diet plan. I've gone to a nutritionist and they have a hard time informing me of any meal suggestions due to the different fiber diet needed based on whether or not I am bleeding.
Laurie Hamblin <Laurie.Hamblin.ai1c@statefarm.com>
Bloomington, IL USA -

I thoroughly enjoyed reading all the success stories here. I too am a "success story" but wish that I had known about this site earlier. I had my total colectomy in the fall of 1991, having suffered wtih UC for as long as I can remember. The J-Pouch is wonderful and I am so very lucky to say "I feel great"! Thanks to everyone who is responsible for this site. Stay well and enjoy life everyone! Kate
Kate Yarbrough <tjykmy@fast.net>
Bethlehem, PA USA -

Good site, glad to see it. I had the 2-stage surgeries in the beginning of 1995 so it's now been 3 years since, and I'm doing great. I had severe UC for 5 years and this is SO much better. I take NOTHING - no immodium or anything, have no leakage, total control, and eat and drink anything I want (though I go more when I eat the 'bad' stuff - it's no problem though). Ironically, I have finally lost and kept off those "last 10 pounds" women are always trying to lose, ha ha, but I don't think they'd want to try this method to lose weight and keep it off! Still, I work out, work full time, am engaged and last year moved cross-country from Ohio to Los Angeles. The 1st year after I had a lot of recurring pouchitis problems, now the most I have is gas and being HUNGRY most of the time because the food goes through quicker. I had my surgery at the Cleveland Clinic with Dr. Fazio and his team and I do advise if you are considering surgery, do not just let any hack who calls himself a surgeon perform this - it makes a difference. A friend of mine from online support groups who had surgery almost the same time I did, from some losers in Louisiana, had major complications the whole year following, including eventual pouch failure and small bowel resectioning - who does the cutting and sewing can make a real difference. Feel free to e-mail me if you need more info.
Nina <neenla@aol.com>
LA, CA USA -

Just found this site tonite! Wish I would have had it a year ago. Had J-pouch 4/97 at Mayo, 2nd surgery 8/97. Have had an absolute great year! Now am having trouble last 2 days passing any stool - am worried! Have read some horror stories and am getting myself worked up to a frenzy - hopefully everything will turn out okay. Would definitely recommend this surgery to anyone suffering from UC = it has changed my life more than I could ever have imagined.
cheryl <ewoldnbc@netins.net>
IA USA -

Another Brit who found your web-site. It is rather good! I have had a "live" pouch for, oh, all of a whole calendar month now, and already I love it. I do have a success story to tell, and it's worth knowing that mine was recently reported in one of our national papers, the Daily Mail on 31st March 1998. Keep up the good work. Under the expert guidance of Dick O'Grady (previous entry to this guest book) we hope to upgrade our UK pouch support to match that found on this site! Congratulations.
Stephanie Zinser <stephzins@aol.com>
Surrey, UK -

I am the national internal pouch secretary for the Ileostomy And Internal Pouch Support Group. This is a self help support association. I have over 300 members on my database, all of whom have internal pouches 'j pouches'. I am slowly setting up a network of willing volunteers around the country who will be trained in basic counselling skills with the ultimate aim of setting up a 24 hour helpline for the pre and post operative patient undergoing internal pouch surgery. One of my often asked questions when speaking to fellow 'pouchies' abroad has been "Are there any support groups in your country?" Well it seems I've found one. What a great web site. If anybody reading this wishes to have a contact in the UK well my email is here and I'm more than willing to chat.
Richard O'Grady <richard.o'grady@virgin.net>
London, England -

I was initially diagnosed with Ulcerative Colitis 20 years ago. However, after living in different areas of the country and seeing several different gastroenterologists, many of them have a differing opinion as to whether I have ulcertaive colitis or crohn's disease. I am strongly considering surgery in the next few months because the pain has become intolerable. My last flare up was this past summer and I was on medical leave from my job for three months. I would like to research the different kinds of surgery related to colon removal and hear personal testamonies. I'm sure I would be free of the pain which would be a blessing in itself; however, I want to know all the facts and how those view it post surgery.
Kitten
USA -

I am suffering with U.C. for the last 23 years. Medication include mesacol (asacol), immuran and steroid (oral as well as enema). There used to be long remissions but for the last 3 years there is no respite. I have to go to toilet 10-12 times a day mostly bleeding. Surgery was suggested but we lack facilities as are available in USA and Europe. Finally when I agreed, Doctor does not appear to be in favour. My suffering, particularly my husband, who has to spend most of his time with me rather his clients - he is a practicing advocatge - is unbearable. I do not know much about surgery except what I have read on this site. Can someone help me please!!
shanta grover <groversr@ndb.vsnl.net.in>
new delhi, india -

You cannot imagine the relief I felt tonight finding all of your lovely well versed notes about UC and your various pouches. I am a nurse in rural Alaska who deals with arranging the follow up for patients with UC, previous polyps and colon cancers. I had never heard of this procedure. My Dad lives in NJ and has been diagnosed within the last six months as having UC. He has been scoped and biopsied. He has been on a multitude of drugs to no avail. He is just miserable with the pain, gas and bowel irritability. Several days ago Dad called me and asked what I knew of the JPouch. I had to burst his bubble by telling him I didn't have a clue... but told him I would reseach it... I came upon this site by pure ACT OF GOD...but have read (and printed) each of the three guestbooks and will be sending them to Dad on the next mail plane. I have learned volumes by tonight. I am sure my Dad will thank you, the medical staff out here in rural Alaska will thank you and my patients will thank you... Carol Odinzoff,RN
Carol Boylan Odinzoff <xkwa19a@prodigy.com>
Bethel, Ak USA -

I just got in on this website and find it all so interesting and theraputic that there are other people with problem related to the bowel. One does not meet that many people in their lives that have had to deal with this sort of thing. The lady in my office the other day complained that her stomach makes gurgling noises and she just can't tolerate it anymore. If she only knew the whole spectrum of things!!!! I had UC since I was 15 (I'm 49) and was in and out of remissions and flairs. My doctors wanted me to have a colectomy for prophylactic reasons and I refused thinking I would never contract cancer. Well, I did and it was discovered in Dec. of 1995 and the ileo-anal anastomosis was performed at UCLA on Dec. 27. As soon as I was able to eat, I knew, I just knew that it was a failure. Well, here is is two years and three months later and I have about 20 bms a day (I envy you people that say you don't like 6-8 bms a day) and leakage and a sore bum constantly. I havae never stopped using diaper creme and still havae to soak in a tub for relief at times when it is bad. I had sphincter surgery at USC in June to correct THAT problem and it was a useless surgery - still leaking and that is the WORST!!! Food? Well, sometimes certain things are terrible on my gut and sometimes they are fine. The most consistent thing about this surgery for me is the inconsistencies. I can havae a salad one day and nothing - the next day I can eat the same thing and be in the bathroom all day. I never have pain in the pouch nor pouchitis. It is just the constant, frequent bathroom trips and the leaking. I do lead a full life however. I work 8 hours a day and have a social life and work around my problems. My general health is good. One thing I miss is physical activity. I can no longer go for my hour walks, play tennis, and just being on my feet over an hour causes great discomfort in my anal area. I plan to have a continent ileostomy in June if I can be courageous enough tomake the appt. I will opt for the BCIR in Century City. I do not think I could handle an ilesotomy with all the terrifying stories I have heard about and the BCIR is all internal. I have interviewed at least 40 people across the country and all of them say they actually love it after all they have been through. Some had failed j-pouches, some ileostomies that they tired of and some right from UC to the BCIR. But, I do want to say for those who are thinking about the j-pouch that it does work for many and thank God. I would have the j-pouch all over again because that is the least invasive and alters body functions the least so it is always worth a try. But after two years I know things willnot improve fo me and I am tired of 1. going to the bathroom 20 X a day 2. leaking 3. still center my activities and thoughts on going to the bathroom 4. Limiting my activities 5. Taking the sparkle out of my life. I have spoken to several people though that love their j-pouches so I don't want anyone to get discouraged about having this operation. It just wasn't meant for me so I will try another procedure and hopefully it will be my road to a healthy life once again. Also, it does take several months for your body to adjust to this change so do no get discouraged if your pouch does not respond the way you think it should. If after a year you are still unhappy, maybe you should consider another option. Thank God there is another option. I still take imodium, lomotil, tylenol codeine and citricel at times. Someetimes they work better than others and who knows why. But anyways, God Bless you all and if I had millions I would donate it for a cure for IBD. Donna
Donna Cappel <rico@tcsn>
Atascadero, CA USA -

Just visited this site the first time today. Am scheduled for J-Pouch (2-step) surgery Apr. 2nd. I've been fighting chronic UC since 1/96, been on prednisone, imuran, methotrexate, all of the 5ASA drugs, all to no avail. Now opting for surgery. This site looks like a great resource from what I've seen of it so far. Thanks for being there!
Nancy P <portern@teleport.com>
Depoe Bay, OR USA -

I've been reading a lot about the J-pouch vs. the ileostomy and I've been there.My problems started in 7/96 when I was referred to a colorectal surgeon by my GI doctor who could not figure out what was wrong with me. I had chronic constipation or diarrhea. After a series of tests I was sent to the colorectal surgeon who said I had a rectocele. So he started biofeedback and did that for almost a year and it didn't work so he decided to do the surgery to remove the colon. That happened in 4/97. During surgery the surgeon found that my colon was all on one side under my liver. He thought he would only need to take out part of the colon because some of it looked good and some of it was not. About 6-8 weeks after the surgery I started having problems with constipation and diarrhea again. I ended up in the hospital with an obstruction. They cleared that us with non surgical methods. On 10/9/97 I had surgery to remove the rest of the colon because it was determined that my bowels were just not working. An ileostomy was put in and I had so much trouble with it leaking from day one. Also the j-pouch was put in and my rectum was removed. I also had to be dilated because of painful spasms. So on 1/9/98 I had the reverse surgery and was hooked up to the J-pouch. My body doesn't seem to be accepting the pouch. I've been in and out of the hospital with it. On 2/3/98 I had to go in for tests and they showed obstruction again so I had surgery the next day to remove scar tissue and fix the obstructed area. I had been dilated the week before but it didn't do any good. I was in the hospital for a month and I couldn't eat and I lost a lot of weight. They finally started feeding me with a tube in my nose. I was in constant pain. Those feedings were 24 hours and kept my bowels moving constantly. They sent me home with an intravenous feeding tube. I hook myself up to it every night and it pumps white stuff into my blood stream. I'm still in a lot of pain. Spasms. I'm going to have surgery again to unhook the pouch on 4/9/98 and have an ileostomy put back in but this time for at least a year. I'm going to have biofeedback and strengthen my abdominal walls and then get reconnected. I just wanted to let you all know what's been going on with me and also want to know if anyone has been going through what I've been going through and if so, PLEASE respond. I've been in pain so long and I just can't wait to feel better, between the spasms and chronic incontinent diarrhea, I need to hear from anyone. Jackie R. e-mail address(nerraf@global2000.net)
Jackie R. <nerraf@global2000.net>
Albany, NY USA -

Hello. I have had ulcerative colitis for 8 years with a large family history of colon cancer. My doctor is very concerned about me and wants me to have the surgery to remove my colon. My dilemma is that I am only 27 and fear that this will alter my life forever. Also, my colitis is not active as long as I stay on my medication, azulfadine and folic acid (not steroids). Is there anyone that I could speak with who has had the surgery that could reassure me that my life will once again be normal? My email address is appleb@infinet.com. Thank you!!! Kim
Kim S. <appleb@infinet.com>
USA -

This is a very informative site for us. My question is does anyone have a cure for pouchitis; not necessarily a medical one?
Matthew Cappucci <Cappconmmm@aol.com>
Toronto, Canada -

great Site. The Discussion Group is most helpful as I am trying to decide wether to go from illeostomy pouch to J-Pouch. I'm getting all the pros &cons. Keep up the good work on this website
Keith Sullivan <KSulli4110@AOL.com>
Victoria, B.C. Canada -

Had my j-pouch done in Sept. of 96, in one surgery at UNC-Chapel Hill. The hospital stay was about 10 days and recovery was longer than I expected. I didn't get back to work full time until 1/97(was doing a very physical job). I also had no insurance at the time so the hospital was more than willing to help out. It took about a year to feel "normal" again. I'm very grateful the surgery went so well it could be done in one step. I had UC for 5 years, having flair ups constantly and 3 yrs. on steroids, thus gained alot of weight. Very glad that's in the past. In 12/97 had an small obstruction that a liquid diet took care of in a week. Since then I've gone from 8 immodium's a day to 1 a day about 2-3 times a week. I really think my body had reached the point of not needing them anymore and that was it's way of saying - I'm done now, no more! BM's are still more than I'd like, 5-8 a day, usually 1 or 2 times in the very early mornings (anywhere from 3-5 am). Popcorn still poses a problem - diaherra. Salads are getting better tolerated. Otherwise, just about anything is okay, except when too much grease. In 1/98 had stomach virus and was hospitalized for a day for dehydration. I found out that without the colon it is alot easier to have dehydration occur. As a result, will be more aware of this in the future. With both incidents since surgery, never had pouchitis. I think this is a great site! It's an excellent resource for support and information. Thanks!
Chris Kuster <cjkuster@med.unc.edu>
Chapel Hill, NC USA -

What a wonderful feeling to find a resource like this. Many thanks to it's creators and contributors. I had a one-stage ileoanal pull-through 7 months ago after having an ileostomy for 16 years. The ileostomy was necessary S/P an acute episode/longterm hospitalization with Ulcerative Colitis which developed into toxic megacolon necessitating the emergency surgery. So, to recap, I had UC since age 17, required longterm treatment with meds, went into remission at age 23, got the clearance to get pregnant, had a beautiful baby boy, then the hormones kicked in with a severe flare-up 3 mos postpartum resulting in the emergency surgery. For 16 years I was just glad to be alive, managed well with the ileostomy, had 3 more children, and went religiously for survellience of the rectal stump left after sub-total colectomy. Dr. Daniel Present is my GI doc, the best, most loving in NYC and probably the world. After the last child (they range a bit, now 17, 12, 9 and 2) I started thinking alot more about myself and the cancer risk. I decided on the surgery, preformed by Dr. Joel Bauer and Dr. Gorfine at Mt.Sinai, NYC. It' s been the roughest 7 months of my life. I always feel like I'm in a category by myself because I waited so long for the hookup that the adaptation of the bowel seems so slow after all these years. I'm on so many meds (after only topical 5ASA suppositories/ cortenemas for 16 years even through pregnancies). Current meds include D.T.O, lomotil, levsin, methylcellulose, and on my own glutamine, a probiotic formula from Cambridge Nutraceuticals, and vitamins. Also, I recently had pouchitis diagnosed (accounting for the bloody stools and more frequent BMS) so I'm on flagyl, too. I'm trying ardently to wean off the lomotil and DTO by increasing the methylcellulose but still have 10+BMs per day. My diet still is low fiber, no juices except vegetable, no fresh fruits except bananas, and no fresh vegetables (Oh how I miss my adlib ileostomy diet). I'm still glad to have the surgery over and not have to worry about the cancer risk (although the rectal bleeding which I've had since the surgery is quite unsettling. I'm reassured by the MDs that the bleeding is down low, and perhaps d/t pouchitis but they are unclear as to why it's been an ongoing thing. I'm looking for a soulmate- someone who waited a long time to have the reconnection done. I'd love to correspond with anyone who has a positive outlook and who would like to share thoughts and brainstorm solutions. I am a registered dietitian/nutrition consultant and have taken a summer position to teach cooking to kids. I'll be a camper with my kids and am excited about spending an outdoor summer after a summer last year in the Mt. Sinai GI unit. I am hoping to be better by then, to have less BMS, less urgency, and more predictability about my bathroom schedule. Thank you for being there.
Michelle Mosner <mosner@idt.net>
Nanuet, NY USA -

I'm a 32 y.o. woman who had j-pouch surgery (2 stages) in 1996 by Marvin Corman at UCLA. It took about a YEAR before I started to feel "normal." Now, I am struggling with chronic, recurring pouchitis. I do the usual course of Cipro and Flagyl but I, too, hate the side effects. * Anybody know of any vanguard treatments for pouchitis?* Also, I started a doctoral program in September and all of my friends and family believe that I just have "too much stress" and think that if I quit school and lie around the house I would be more healthy. Anyone else have to deal with such well-meaning folk? I take 8 immodium a day, and metamucil with meals. When I don't have pouchitis, I have about 6-8 bowel movements/day + 1-2 at night, which has really affected my sleep. {If I have to listen to another new mother complain about getting up to feed a baby for a few months, I think I'll scream...I haven't slept through the night since 1990, often getting up every 100 minutes!} Anyway, I just found this site, and it's obvious that I have a lot to vent, isn't it? :o) Would love to chat with anyone and perhaps meet people in the Washington, D.C. area to form a group????
Leslie Dinauer <dinauer@wam.umd.edu>
Quantico, VA USA -

My husband had surgery (iliostomy) about 3 years ago. He is still having problems adjusting to the changes, mentally. He is thankful to be alive, since before surgery, he almost died. I was wondering if any other wives of men who have had an ostomy can relate to my situation. Thank you.
Teresa Stenning <chooch@tir.com>
MI USA -

I am a 34 year old woman who had j-pouch surgery on 1/19/98. Due to major complications, my surgery did not take and I had emergency surgery 4 days later, receiving a permanent ileostomy. I was hospitalized for 14 days and left the hospital with compications. I continue to have drainage from 2 abscesses and the VNA and I are having difficulty trying to fit my stoma with a proper pouching system since my stoma has shrunk to a less than 1 inch oval shape. To complicate matters even more, my health coverage runs out this month and I have no income to buy the pouches, paste and powder that I need! I need encouragement, support and resources (if possible) from anyone who can help me. Diane
Diane Proulx <gabby48@juno.com>
Toledo, OH USA -

Had one step J-Pouch surgery on 2/11/98. Diagnosed 1993 with UC. Posted some of my story already. Feel great but have lots of questions and need the support of this group. Very willling to share all my experience with anyone who could use it. In fact heading to docs for 1st post op check up. Things have been good except for easy fatigue. Getting bored at home and hoping to return to work part time. Been eating everything, with little or no reaction, except the other day ate salad and had severe diarrhea until I took lomotil. Haven't quite been the same since. BM's not as firm as before. Babbling right now. Thanks for being there. Hope I can ad to this wonderful site. Mel
Mel Borses <mborses@aol.com>
Northridge, Ca USA -

I was diagnosed with UC in Feb. 1997, just two weeks before my colon perforated. I had emergency surgery to remove my colon. Since then, I've had an ileostomy. I'm scheduled to have a J-pouch surgery on April 3. I'm thrilled that I'll be getting a J-pouch. Since I was not one of those who had to live chronic UC problems for years (actually, I had chronic constipation!), I was never thankful to have my ileostomy, although I'm thankful to be alive. I would like to hear from others who are going through or have gone through this surgery, to share experiences. I would also like to know if there is a J-pouch listserve I can join.
Daniel Sapon-Borson <danielsb@teleport.com>
Portland, OR USA -

I was hoping to talk to anyone who has had to be dialated. I was dialated 2 days ago due to scar tissue that formed around the anantomosis. I was having great difficulty having bowl movements with terrible cramping for about 6 weeks. It has only been about 3 months since my surgery so a lot of my complaints were explained as part of my recovery. Since I have been dialated I feel great. I actually feel like doing something. However, I have heard that some people will constrict again. The procdure was performed under anesthesia and except for being a little sore for a couple of days there was no pain. I am just worried that this will come back. I would love to hear from anyone who has gone through this procedure and was either successful with having it once or has had the anastomosis constict agian.
Kellie Upchurch <Upchurch@mail.icongrp.com>
St. John, IN USA -

Had my J pouch surgery 10 years ago and things are going fairly well but I still have recurring bouts of pouchitis that are an aggravasion, Anyone have any ideas on causes and dietary cures as I hate the side effects of Flagyl.
Brenda Laberswieler <dormeister.lab@sk.sympatico.ca>
Strasbourg, Sk Canada -

I! I'm Judi and I've had an Iliostomy for 34years, and no I haven't had the J-Pouch. When I had my ist surgery, it was not even dreamt about. Just having an "Ostomy" was considered good. It's nice to read about other people that are in the same situation. I wish that the J-Pouch was an option for me, but I'm sure that it isn't. Acutally, I still thank my lucky stars and the Lord that I'm as normal as I am. I was able to be working out the the gym and working as the weight machines until I hurt my wrist at work over a year ago and am now recovering from wrist surgery. Believe me, I would undergo 30 abdominal operations again instead of having surgery on my wrist. Thanks for letting me vent.
Judi <JM858@Prodigy.com>
Tacoma, WWwa USA -

Hi my name is Mary and here is my story I have had Ulcertive Colitis so they say since I was 14 or 15 Each year it would flair up every Feb. Last about a month then go away but when I turned 19 Feb went by and so did Mar April then around the end of April it flaired up again. this time I couldn't control it like before and got sicker and sicker. By August I was so sick My large intestine perferated and they took it out. I was fine after the operation but they then gave me moriphine and did know I was alergic to it Iwould go into grand mall seizures and within a half an hour it they did trans port me to a bigger hospital Iwould have died I lost all my bladder control couldn't walk or eat and lost all my hair I was 70 pound when I woke up. P.S I didn't lose my hair until a couple months later. In London at that time their was anew sugery out to make me normal again an Ileo-anal anastomosis but I would have to wait until I was alot stronger so it was sedualed for Feb 3 It was an 6 and a 1/2 hour sugery alot to go through but it wasn't over to let that heal I had to have a bag for another 3 months before atlast I could be a little normal again that was an 2 and 1/2 hour surgery. I was know at around 110 Pound and it took me along time to gain that amount know I was consided a mirical. The doctor thougt for such a sick girl my troubles would be over? Little did they know that the type of Ulcerative colitis I had was so closely related to crohns that only 10% get this and 2 to 3 years later I began getting pouchits and developed 3to4 fitulas and then had 3 more surguries to correct this and give me another bag Know I sit and wait for a cure for this god alful disease and I feel for all who have it because I know what you are going through so feel free to e-mail me Mary
mary baes <mpbaes@golden.net>
stratford, 0N Can -

I had the j-pouch constructed in 1992 at the Cleveland Clinic and it has probably saved my life. I finally finished college, blah blah blah, and have gotten on with my life. Feel free to email me with any questions.
James Holland <jamesholland@hotmail.com>
Cleveland, OHIO USA -

Hi! I'm a 27 yr old female, whose had an ileolanal anastomosis in 1996 and I've been able to recover successfully. However I have experienced a few obstructions and now seem to have a problem with straining and gas, when I go to the washroom. The combination of the two is very embarrassing and frustrating. If anyone has any suggestions for what I can do, I'd greatly appreciate it. Thanks.
Tina Tagarelli <taga@hotmail.com>
Toronto, ON Canada -

Thank you!! I found your web site to be helpful when I was researching the j-pouch operation. I like others, suffered from ulcerative colitis! I was diagnosised in October of '95. This past summer I got really sick and was hospitalized for 6 weeks.(TPN, predniscone, asacol, lost 30 pounds, the works). I had my ileostomy on 8/5/97 and immediately got better, I had my j-pouch surgery on 11/5/97. I have some itching and burning but overall I am very pleased with my decision. Any suggestions on how to help the itching? I am free from illness. I only go to the bathroom 6-8 times a day. I recently started to take lomotil because of the burning and itching. It seems to have helped.My question is how many people have colitis, how many lead to ileostomies and how many people have j-pouches? I had a hard time finding statitics. I welcome anyone to e-mail me to discuss experiences. Once again, thank you for your help!!! It helps to know I am not alone and others understand. Joanna
Joanna <JPAS106799@aol>
NJ USA -

I am thrilled to see this site. My husband had j-pouch surgery 15 years ago. I only wish he had had the benefit of the shared information available here. He's led a very normal life for the past 15 years -- UC was a curse for him (and for everyone who suffers with it, eh?). He is a very active man with no limitations. Best to you all.
Diane Cvetovich <DCvetovich@AOL.com>
Redmond, WA USA -

I had a J-pouch created 9 years ago and it was the best decision I ever made. Had a couple of bouts with pouchitis the first few years, but those have stopped the last 4-5 years. With the use of Metamucil, I go anywhere from 4-8 times/day (depending upon how greasy the food is). I'm in the best shape ever (run, swim, ski) and no longer consider myself different. I know I'm one of the lucky ones! I just found this site (I only bought a home PC a few months ago) and would love talk to anyone going through the same things I went through.
Steve Smith <SPUD00001@aol.com>
Falls Church, VA USA -

I have PSC and UC. I've just had an illeostomy and am waiting for pouch surgery. I have to get off prednesone before that, and am having some problems. Any comments?
Gary Tucker <ctucker@callisto.uwinnipeg.ca>
Winnipeg, Manitoba Canada -

I signed the guestbook yesterday and was checking things out today. I did not find my entry, so I will check again tomorrow. Would really like to hear from someone with similar experience. Jen
Jennifer Scott <scottm@apci.net>
Belleville, IL USA -

Hi, it was nice to find this site with all the input from people who have had this surgery. I had colitus for 8 years before surgery was the only option left. The j-pouch was "created" in two surgerys, the last being two years ago. I average 10 trips to the bathroom a day. On the days I work I have to take one Tylenol #3 every two hours in order to not dash between breaks. Has anyone found anything that helps reduce frequency? We are currently without a doctor in our area , that does this procedure , so our GP's don't have all the current information to help as much as we would like. I must say though , that I haven't felt this good in years and don't miss the labour like pains that went with the colitus at all! Hope you all are healthy and smiling.
Debbie Howell <will4@uniserve.com>
Canada -

Had final phase of surgreu Oct. of '95. Have had many unexpected things happen since then. I am 22yrs old and would like to talk with someone my age, single, college, and who has had completed all phase and a few years past that. Also, anyone who may if there is any scholarships for people who have gone through this or how I can find out if there is any , it would be helpful. I know there is many scholarships and grants for people with many kinds of ailments, perhaps there are some for people like us. My mom would also like to talk to any mothers who were by their childrens side through all of the surgrey. P.S. I was diagnosed with UC and 6 weeks later my colon perferated and had emergency surgrey. Hope to hear from somenoe soon. This is great! Bye, Jen
Jennifer L. Scott <scottm@apci.net>
Belleville, IL USA -

I had j-pouch surgery almost seven years ago and have been very happy w/o colitis. I just recently discovered this website--it is very informative! Am curious about pregancy and delivery with a j-pouch. I am pregnant now and would like to avoid a cesarean section if that is possible.
Abby Cowan <aubreycowan@juno.com>
USA -

Had J pouch in 3 stages & 2 additional surgeries due to strictures. Had been ill w/ UC. Hope to be 'normal" again soon. I'm 42 & get discouraged at times.
John Melia <jkmelia@massed.net>
Methuen, Ma USA -

Great Site. I enjoyed reading the questions and answers.
Julie Templeton <jt@worldaccessnet.com>
Brush Prairie, Wwa USA -

I HAVE BEEN SUFFERING FROM ULCERATIVE COLITUS FOR ABOUT 15 YEARS AND WOULD LIKE SOME FEEDBACK ON THE VARIOUS OPERATIONS I CAN OPT FOR.
Nan van der Meulen <boogi@iafrica.com>
Cape Town, South Africa -

I'm 18 yrs old and looking at this surgery at the beginning of summer. I would love to hear some feedback from some people who have had this done. I'd also appreciate some suggestions, advice, or anything I might need to know.
Gregory Hagemann <solid_ice36@mail.utexas.edu>
Austin, TX USA -

I am excited to find you. Sometimes it feels lonely out here since I don't anyone else who has had the surgery. I had my first surgery 4/97, but developed septic shock, fistula and a pelvic abcess. It was touch and go for a couple of weeks. Had diverting ileostomy same week of 1st surgery and then takedown 4 months later. Since then, constant pouchitis problems. But still, its better than before. Don't regret it all. But the complications were very scary. I'm just glad to be alive and doing as well as I'm doing.
Susan Sawyer <zuzieq@msn.com>
Thousand Oaks, CA USA -

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 -

Please sign the new Guestbook. Older letters can be found at the guestbook links from the home page or guestbook lead page.
Bill Johnson <bjohnson@j-pouch.org>
Hatboro, PA USA -

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