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J-Pouch ForumsK-Pouch Korner
Master List of KP/Bcir surgeons
JaniceMJaniceM
amos Dr Schiller is retired. [ more ]
Kushami Updated after contacting surgeons: Quality Life Association has two surgeons listed in Melbourne, Australia. Mr Philip Smart https://www.drphilsmart.com Email from surgeon states: Can help patients who already have a continent ostomy, but does not create them at time of enquiring (2023). Mr Satish Warrier (Note: His name is spelled incorrectly as “Warriner” on the QLA website. It’s definitely “Warrier”.) https://www.epworth.org.au/who...or/mr-satish-warrier Waiting to hear back (The QLA list... [ more ]
Razorback Dr Robert Jacobson has retired and none of the drs that took his place know anything about the KPouch He was my Dr and was great. [ more ]
See all 104 replies...
J-Pouch ForumsK-Pouch Korner
removal of gallbladder years after having K-pouch
L lcolche
Shavon Just in case someone is looking for updated information on this topic. I had my gallbladder removed at Northwestern in Chicago by Dr Teitelbaum. He consulted with Dr Strong who used to work at Cleveland Clinic with Dr Dietz. It was laparoscopic and I didn’t have any issues. [ more ]
jan15 That makes sense. Thanks for explaining. Be well and peace [ more ]
Kim S I’m don’t think Dr. Dietz can be officially listed at Langone until he completes the credentialing process that dr’s go through when they move to hospitals in another state. Based on Facebook comments, it should happen in October and folks who have been in the queue are getting ready to schedule appointments as soon as they open up. He has already communicated his scheduler’s name and contact info to existing patients. [ more ]
See all 23 replies...
J-Pouch ForumsK-Pouch Korner
Catheters -- International Suppliers
emmeemme
jan15 this could help stoma nurses explain to potential k and bcir patients. it doesn't fill in the pro and con details, but that's why we help each other on this site! btw, i use a fr 34, which is denser, as he explains. it enables me to enlarge the holes. be well, jan [ more ]
emme Just to add: A very informative video clip, from the BCIR community with reviews of Marlen and Medena straight and curved catheters. https://bcircatheter.com/video/ [ more ]
See all 2 replies...
J-Pouch ForumsK-Pouch Korner
Barbie Butt Closure
B BethW
Former Member Yes! I agree!!! Thank God!!! Its nice to have people that can empathetically relate!!! And we learn soo much from peoples stories on here!!! Forreal!!! [ more ]
Former Member Wow your j-pouch was botched by Dr. Remzi??? Damn!!! I never heard not one complaint by him. Thank-you for sharing this, I always thought he was perfect. [ more ]
Karmen I just have to say thank god we have this site to turn to. It’s so good to have people who have what you have and can give helpful hints! I’m not a unicorn. [ more ]
See all 16 replies...
J-Pouch ForumsK-Pouch Korner
Stricturplasty on the Valve / Valve Replacem’t
A AliBly
Former Member I am so happy to hear that!!! For people that cannot have a j-pouch now have another option with a continent pouch!!! Praise GOD!!! I thought it was nearing impossible but I see its possible now!! Thank-you!!! [ more ]
Kim S Dr. Kiran probably does the most continent pouch surgery in the U.S. Very talented and caring. His practice, Columbia Surgery, is located in a building right next door to New York Presbyterian Hospital. I traveled to his office for a routine scope a couple of weeks ago. He repaired my valve and parastomal hernia in 2019 and I’m doing great. [ more ]
Former Member Found him!! Thank-you!! I was scared no surgeon does that surgery anymore! Glad there are some that still do! [ more ]
See all 17 replies...
J-Pouch ForumsK-Pouch Korner
Has anyone had their stoma dilated (with balloon by dr Shen?? Or any other d
marzmarz
jan15 Marsha – Did Dr. Shen mention which muscles were problematic? Sure hope you can make it until September. Sounds like a tough situation, for which I have no suggestions other than standing up or lying down when inserting. Did Dr. Shen have others aside from leaving a stent in to expand stoma? Yes, please keep me posted. Jan. [ more ]
marz Thank you Jan for your “positive” response!! I just made my appt for sept and not worried about stoma being tender—-because it’s already tender just using the 24 fr. This happened right after my yearly scope in June. He did dilate the inside a bit In June, but I never expected this to happen. I’ve been having scopes for about 12 years and it’s always been ok. I think I will have anesthesia since my husband will be there —but maybe not. Dr Shen said the dilation takes one minute. I asked how... [ more ]
jan15 Marz--YES Dr. Shen dilated my stoma two years ago. I am still so pleased as able to use a 34 fr. Because I didn't have anybody to pick me up he was kind enough to do the surgery with lidocaine shots to the immediate area. The anesthesia team was convinced it wouldn't work but I'd do it the same. Ask him for his opinion on it. Stoma was tender for a week or so afterwards, but not a problem. Can't speak to the granulomas other than mine are very small. Yikes, that sounds annoying, at the... [ more ]
See all 3 replies...
J-Pouch ForumsK-Pouch Korner
Use and Cleaning of Catheters
LuckyLadyLuckyLady
LadyTay97 I just wanted to add to my post. ...I stopped using bleach a long time ago. I clean the catheter with the brush wrap in a pipe cleaner and soap and water. And then I put it in a plastic container with white vinegar and baking soda for at least an hour or more. Hope this helps. Have a great day. [ more ]
Former Member ❤️
LadyTay97 I purchased my Medina Catheters from Vitality Medical. You may need a prescription. If you go onto Vitality medical website and search for 'catheter' you may get urinary catheters. I just did it. But when I searched for 'Medena Catheter' I found the catheters I use. Medena Catheter 30 french. I hope this is useful. Good Luck. [ more ]
See all 20 replies...
J-Pouch ForumsK-Pouch Korner
Pouchitis symptoms with K pouch
J jan15
skn69 Hi Jan, I do hope that things have calmed down a bit. 1. I never had bleeding with pouchitis, as far back as I can remember. 2. I have had bleeding for other reasons like an irritated stoma, granulation on the stoma (little white or red bumps that grow and build up on the pink tissue of the stoma). I have to cauterize them regularly. It doesn't hurt but afterwards it bleeds quite a bit for 1-2 days...then fine. 3. Everyone has different symptoms with pouchitis and different causes. Sometimes... [ more ]
See 1 reply...
J-Pouch ForumsK-Pouch Korner
Is a K-POUCH the same as BICR???
FM Former Member
Former Member Oh that is soo cool! I love that! I think that is great! Too bad its not as common as it use to be. I love how you are free from butt burn lol. I always thought the barbie butt was awesome!! Carrying the catheter when leaving the house must be annoying at times. But honestly that is way better than dealing butt burn, butt burn hurts lol. [ more ]
bcirray correct [ more ]
Former Member Oh cool, I guess there is not need to check then, that is cool! Do you have the barbie butt??? Like sew everything shut where there is no crack or opening??? And you you have to patch up your stoma??? [ more ]
See all 9 replies...
J-Pouch ForumsK-Pouch Korner
Valve Concerns
D dpol
skn69 Hi, a couple of thoughts here, 1. your pouch may have a slight twist making it smaller and when it fills the valve tends to clamp shut. 2. If it is a living collar type of K pouch (mine was converted for the stability about 12 yrs ago) then it automatically fills the collar like a doughnut and clamps it more shut (grammatically wrong but biologically true!) 3. a dropped pouch can fill and sit on the bladder. When the bladder fills it pushes it back up and makes it harder to get the catheter... [ more ]
Kim S Grandmaof1- no, we aren’t talking about a j pouch, we are referring to an internal continent reservoir which is a K pouch or Kock Pouch named after the original surgeon. There is also a similar internal reservoir called a BCiR. These two internal pouches are similar. They are drained a few times a day by inserting a catheter into a type of stoma on the lower abdomen and through a valve (made of small intestine) and just drained into the toilet. You decide when you are going to drain it. In... [ more ]
grandmaof1 So after reading everything I have a few questions. Are you inserting into your rectum? My new surgeon said he had one other patient do this and it works great for her. But I’m not sure I can do this. This jpouch has taken to many years of my life away. Sorry if this doesn’t relate to a jpouch. Thank you. [ more ]
See all 9 replies...
J-Pouch ForumsK-Pouch Korner
Continent Ileostomy WOC Nurse Questions/Feedback
E ET_RN
skn69 A little addendum to my previous post: Some of the things that we never tell Continent pouchers: 1. your stoma is part of your body, it is not made of artificial tissue, therefore it will react to everything you eat or do. 2. If you are dehydrated your stoma will shrink. It will get tight and difficult to intubate. Use more lube. It may even crack and bleed. As long as it is just a few drops of blood, you should be ok. 3. Your stoma will react to your meds. If you take antihistamines... [ more ]
skn69 Thank you for taking the time to ask, ET_RN, I'm one of the oldies here. Almost 45yrs with my K pouch and still learning. I also took the incredibly stupid plunge and moved to Paris 40yrs ago, where no one even knew what a K pouch was. The only surgeon who I ever met who had done one, 'didn't believe in them' and tried to remove mine at every turn. I was number 13 on my surgeon's list of Kock pouches made. That said, he had a fantastic team and a great stomatherapist. She sat with me, showed... [ more ]
skn69 ❤️
See all 7 replies...
J-Pouch ForumsK-Pouch Korner
Doctors knowledgeable about k pouch in Europe
D Db20
skn69 Hi DB20, how can I help you? What do you need to know? What medical info can I give you? I have lived in Paris for over 40yrs now and have a good network if you need it. Just PM me. Sharon [ more ]
Db20 Thank you. [ more ]
BillV The best one that I know of is Dr. Gabriela Möslein 47053 Duisburg, Germany 49 152 0203 6008 0 You might also want to join the Poucher Lifestyle Facebook group that is hosted by Sharon Neuman Cochrun who lives in Paris. [ more ]
See all 3 replies...
J-Pouch ForumsK-Pouch Korner
Dr.Dietz
B BethW
jan15 beth w--how was consult with dr dietz ? decision? are you now a k-poucher, in our korner? humor essential. jlh [ more ]
Kim S Just the dates and the Cleveland location: Sept 19, 20 and 21 of 2024 the conference committee will be planning. [ more ]
jan15 Kim – thanks for that information. Is there any written information from the conference? Beth– I had a failed J-pouch. [ more ]
See all 6 replies...
J-Pouch ForumsK-Pouch Korner
K pouch help!
J Jenny22
skn69 Hi, I've had my K pouch for 45 yrs now (yikes!) and have had different periods in my life where my diets has varied. Firstly, your best friend, at least for the 1st year, will be an immersion blender. The hand-held kind that allows you to blend anything you like into a purée or a soup. It chops up chunks and breaks down fibers. Depending on the condition of my pouch at the time, I have just turned my fruit salads into smoothies and my vegetable soups into creamed soups (without the cream!). [ more ]
Kim S Next year’s QLA conference will be in Cleveland Ohio. The hotels have become very expensive for our conference’s so the organization is trying something new for 2024 and Dr’s Dietz and Miller-Ocuin have offered use of University Hospital’s conference services. There is a hotel across the street from the hospital where folks will be staying. [ more ]
Kushami ❤️
See all 15 replies...
J-Pouch ForumsK-Pouch Korner
Doctor
R Razorback
jan15 dr. Dietz, at University Hospital, did my surgery. Highly recommend him. Absolutely fantastic doctor. Because it is closer I now go to NYC and every doctor since has commented on how well my valve was created. [ more ]
Kim S Dr. Ashburn in Winston Salem, NC or Dr. Dietz in Cleveland, OH I’m partial to Dr. Kiran in New York City [ more ]
See all 2 replies...
J-Pouch ForumsK-Pouch Korner
Going at work or public bathroom
P Peter855
dpol Peter, regarding the odor issue, many years ago I started taking a digestive probiotic and it reduced the smell a decent amount. I also know that some people use Devrom. I wish you the very best!! [ more ]
dpol Going to the restroom at an office building or other public places is the one time I wish guys carried purses. I never needed to irrigate to go to the restroom in a reasonable amount of time, but cleaning the catheter was a problem. When I was young and did whatever was necessary to have a normal life, the way I cleaned my catheter was not pleasant. I did this for over 25 years and then was able to move my work home and one of my big motivations was to not have to do the things I did for so... [ more ]
Shavon ❤️
See all 51 replies...
J-Pouch ForumsK-Pouch Korner
Blockage
amosamos
jan15 great to get appointment! [ more ]
amos Finally have a video appointment with dr Cindy kin at Stanford on Friday. The last person I spoke with said they can’t see where I’m at and if asked to tell them I am in California. Hopefully all goes well and I will be able to get a real appointment to see her soon. [ more ]
jan15 amos-- I think the 'need to be in state' is state law. some states don't have them. I just say I'm in state. suspect the docs don't care. I agree your situation is frustrating. sorry I have no suggestions. when there are delays to get an appointment i often request to see their pa or resident or whoever works under them. or i get my pcp to make the connection, although i doubt it would help in this case. perhaps your pcp has an idea. afterall, they know how to make system work. jan [ more ]
See all 38 replies...
J-Pouch ForumsK-Pouch Korner
Video: Symposium on Ileal Pouch Disorders 9/2021
J jan15
Kushami Thank you for posting this! I am just watching it now to see whether they mention my rare complication. [ more ]
AMB Just found this post. Thank you so much for posting it. I'd seen the post for the up-coming January program, have that on my calendar and shared it with my local GI group. Educated patients are important partners in their own care, but including them in medical programs at this level is rare. What a great program Columbia has developed. [ more ]
Former Member ❤️
See all 3 replies...
J-Pouch ForumsK-Pouch Korner
Flex Sig with K-Pouch?
marriedguymarriedguy
jan15 like sharon I don't get anesthesia for my scopes. one reason is needing to be picked up by somebody, which doesn't work for me as not in my home town. but biggest reason is I want to see pouch lining condition, and be able to communicate with doctor during/after procedure. this is especially helpful if there is a problem. jan [ more ]
marz I go to dr Shen yearly for my scope. He uses miralax for prep, 2-4 ounces is always enough. He also started me on entivyo for pouchitis and it is still working after 2 1/2 years.(local dr does orders for this) most local GIs know Shen is the expert!! Previously I was on the rotating antibiotics and ended up with c diff. I wonder if Dr Shen still does video visits?? He said he really enjoyed doing them during Covid. Maybe you could get another opinion from him?? good luck. [ more ]
skn69 I only get scopes as needed usually for a pouch twist, a valve problem or leakage (normally due to my pouch falling off of the wall). I stick to a light meal 24hrs prior to the scope and no fibers. I switch to clear fluids after 6pm. That is it for the prep! No bowel prep, no magnesium whatever. As for the scopes, I have never had any anesthesia since I've had my K pouch. I watch, comment, direct traffic so to speak. They use a simple child's scope so as not to injure my pouch and usually... [ more ]
See all 8 replies...
J-Pouch ForumsK-Pouch Korner
Urgent: Need reviews/info on Dr David Dietz, Cleveland
S sldrx
Robert L. Boyer M.D. I am a 70 yo retired physician diagnosed with severe ulcerative colitis at age 15.I experienced the ulcerative colitis hell until I was 18 at which time I recieved a Brooke ileostomy (bag) in 1970.I was happy as a clown in that the U.C. Joint arthritis,weight loss,etc. disappeared. For cosmetic concerns I recieved a K pouch in 1979 at the Mayo Clinic and a redo in 1980.It served me well for 40 years until I had a valve slippage in 2021. After doing some research I opted to have Dr. Dietz... [ more ]
Big D of 3 Hi Jan15 - I’m converting from a loop ileostomy, which I’ve had for about 7 years. I’m about 45 and have had Crohn’s since I was 20, although it has never been in my small bowel — which makes the k-pouch a viable (and the only) option for me to get rid of my bag. I’m a very active person and have been on a quest to get rid of the bag ever since I got it. I have wonderful doctors at a world class IBD center, but nobody mentioned the K-pouch option until I did a virtual second opinion with... [ more ]
jan15 Dr. Dietz did my conversion from J-pouch to K surgery in 2015. I now go to NYC/Columbia due to convenience and just for routine scopes. If I needed a major revision I would go back to Dr. Dietz. He is fantastic. Every Doctor who has scoped my pouch comments on how well-made it was. Many of the Cleveland clinic K pouch doctors have left and are in NYC. What you hear is it’s past reputation. Dr. Dietz had been at Cleveland clinic. are you converting from J to K? [ more ]
See all 10 replies...
J-Pouch ForumsK-Pouch Korner
Has anyone with a k-pouch or BCIR been stopped and patted down by TSA airport agent--because of their pouch??
marzmarz
jan15 I agree with their difficult situation. Continent ileostomies unlikely in training manual. Upon thinking about the problem there isn’t any way around it other than providing a one sentence explanation and letting them inspect. It’s up to me to get to airport earlier. Then I won’t get flustered if they need to inspect or see stoma. Honestly that’s worse for them! [ more ]
skn69 They actually do get training (supposedly) about ileostomies, titanium hip joints, pacemakers, and an assortment of other prosthetics...what they do with that training is up to them but I have read that there are people who wear fake ostomy bags to pass drugs in...why not, if they also shove it up their....? I pity the TSA guys who walk a typerope between really ill people and fakes who try to smuggle drugs... [ more ]
jan15 We can’t expect TSA inspectors to know what a catheter is. Nor why we carry around an empty extra large enema container. Let alone two or three duplicate kits. Consider how different we are and how small our Kpouch tribe is. In hindsight I respect their lack of profiling. I doubt any of us look like a terrorist or a bomb thrower. Peace, Jan [ more ]
See all 14 replies...
J-Pouch ForumsK-Pouch Korner
Leakage of k pouch after surgery
R Razorback
skn69 Hi, Razorback (interesting name!), Your k pouch valve is very new and young in its evolution. It scarred in around the tube over the first month post-op but sometimes it needs a little more time to settle and heal. You can do 1 of 2 things. 1. Put the tube back in for a few weeks and allow it to scar in a bit more (which means that it may take a bit longer for your pouch to grow to its full capacity) or 2. intubate a bit more frequently which can also put excessive stress on the valve. Try... [ more ]
See 1 reply...
J-Pouch ForumsK-Pouch Korner
Looking for a physician
C CindyO
skn69 Hi Cindy, I've had my K pouch since 1979 and moved to Europe in 1983. I have never had a K pouch surgeon here to do the work and revisions. I was either at home or flew home when I did need them urgently. For the 'easy stuff' like scopes, hernias, blockages, bowel twists etc I have a general surgeon who knew nothing about K pouches but was very open to learning. He did a tandem on me when he invited my K pouch surgeon to fly in for emergency surgery and learned a bit about my anatomy while... [ more ]
CindyO Hello jan15, I really know nothing about a scope! I have never had one. I see that many people do, in this forum. Why would I do that and do you go to Dr. Dietz for that? [ more ]
jan15 Dr. Dietz did my kpouch and I highly recommend him. I’m curious if you don’t have annual scopes. Jan [ more ]
See all 5 replies...
J-Pouch ForumsK-Pouch Korner
Crohn’s with KPouch
S Shavon
Shavon I agree that Dr Dietz is amazing. He created my K and has been helping me try to hold on to it. I’m seeing him next week to review my options. I love him and his team. However, I am getting tired of having to halt my life and run to Cleveland for emergency issues with this pouch. I love my K when it works. But the unpredictable issues that land me in the hospital every 18-24 months are causing major anxiety. Im wondering if I need to just give up and get a more stable Brooke that my medical... [ more ]
Robert L. Boyer M.D. P.S. I failed to mention that my k pouch revision was performed by Dr.Dietz at university hospital in Cleveland. He is a very affable surgeon, very bright with wonderful surgical outcomes. R Boyer M.D. [ more ]
Robert L. Boyer M.D. I was diagnosed with ulcerative colitis in 1967 and recieved a curative Brooke ileostomy in 1970. I then recieved a k pouch in 1979. I did well until I had a slipped valve. Dr Deitz at university hospital performed a k pouch revision in 8/18/22.When I woke up after surgery he told me I had Krohn disease based on his operative evaluation. A biopsy confirmed Krohns disease. Fortunately I have no symptoms consistent with Krohns disease. Good luck to all of you. Sincerely,Robert L. Boyer M.D. ... [ more ]
See all 4 replies...
J-Pouch ForumsK-Pouch Korner
Dr. Bo Shen- director of the IBD Center at NYP/ Columbia.
E ET_RN
Mcalen I am also wondering if he did have consultation with overseas patients during the pandemic as the patients couldnt travel due to restrictions, if that would also be possible if someone cannot travel due to his physical condition(?) [ more ]
Mcalen thank you have opened the link and searched for "pouch" or "shen" but this returned no results on past events. (?) [ more ]
Kim S ❤️
See all 11 replies...
J-Pouch ForumsK-Pouch Korner
Anotherday, another question: how long did it take for your pouch to mature?
R readann
Maverick Plus It took me about 2 years to get to my new "normal". [ more ]
skn69 Hi ReadAnn, After over 40 years I can honestly say that it is never, ever the same from day to day and month to month. I recently had dental surgery for my wisdom teeth...a 9-day run on antibiotics. I am down to 4xs day which has never ever happened to me before! No urgency or gas. It has been since May and nothing has changed...does that mean that I had low-grade pouchitis? I don't know. I do know that for now, I am enjoying the freedom that not having to intubate 8 or more times a day... [ more ]
readann Thank you! I really, really, REALLY appreciate you answering all my questions on here. You're so kind! [ more ]
See all 4 replies...
J-Pouch ForumsK-Pouch Korner
When you change your stoma covering…
R readann
skn69 I used to use just a folded-up kleenex but as years went by I developed a crook in my valve which holds stuff after intubation. That means that around 10-30mins afterward it pushes out the stuff. A bit of output, a bit of mucus, a bit of whatever...I am no longer scared or shocked. I use a 1/2 of a minpad stuck to my undies and a folded kleenex against my stoma. The minpad stays on for 24hrs unless there is a lot of stuff coming out, the kleenex gets changed as needed (usually after each... [ more ]
readann Amazing detail; thank you. [ more ]
kaydbird I have mucous most times, some days it is saturated, some days not so bad. Sometimes thick, sometimes thin. I haven't figured that out but I guess I don't care enough to try I only change my stoma cover when it feels overly wet cause that will cause skin problems. Sometimes there will be a tiny amount of blood. The stoma is highly vascular so it bleeds very easily and can get dinged by the catheter. I wouldn't be worried unless is it was more than a few drops. I have very rarely had a small... [ more ]
See all 6 replies...
J-Pouch ForumsK-Pouch Korner
The side holes of my catheter is causing my stoma to bleed. Help!
R readann
readann Thanks! My surgeon and I figured it out. [ more ]
skn69 You might also want to file down the edges of the holes...they can sometimes be rather rough! Just use a standard emery board or a fine sandpaper...double-check them for sharp bits. You can also boil them but it works less well. Sharon [ more ]
readann Thanks! My surgeon scoped it today. [ more ]
See all 8 replies...
J-Pouch ForumsK-Pouch Korner
I’m tied to the toilet…
R readann
readann Thank you, unfortunately, I don't have Facebook. [ more ]
kaydbird the k-pouch facebook group is very active, if you're on facebook try posting there you'll get a lot more responses. [ more ]
readann Thank you! partly that is due to gas -- there is maybe 100ccs of fluid, but as soon as I put in the catheter, a huge gas burst comes out. It gets better in the afternoona nd evening, it's just the morning. Thank you for the response! I wish this board was more active. [ more ]
See all 6 replies...
J-Pouch ForumsK-Pouch Korner
Need a tip for the public bathrooms
R readann
readann Great idea with " I put a bit of toilet paper in the bowl and that keeps splashing to a minimum. " Thtank you! I actually bought a little collapsible bowl today to use in private bathrooms to put in my kit that maybe I can put on the counter or in the sink to easily stand. [ more ]
kaydbird I always stand to empty my pouch I don't like to sit, though I have done so (mostly in public bathrooms) I have not tried sitting backwards, that sounds weird. My husband even had a special little stool build to my specifications for use at home and I empty into a little bucket. I will also kneel in front of toilets if its not a public restroom (like a friend's house). I prefer to stand in stalls, a lot depends on how low the toilet is. I put a bit of toilet paper in the bowl and that keeps... [ more ]
readann Thank you for all your tips! It definitely helps to have advice from others and it must have been an adventure for you at the beginning. I wish this forum was more active. My stoma nurse said to sit backwards, but I don't know. I am going to buy a collapsible bowl and put it in the sink as standing is much easier for me. It seems like the only solution. [ more ]
See all 4 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.

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