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J-Pouch ForumsGeneral Discussion
Is the colon the new wisdom teeth?
FM Former Member
tf There's NO choice & what a ridiculous question. Having ur original parts is how u were created & replacements will never b the same. I would want my colon back healthy in a heartbeat than to live like we have to without it. I wouldn't wish this on my worst enemy. I would never had this surgery unless it wasn't for to save my life. I say to anyone out there do your best to change the outcome with diet or any other means if u can before ever having ur colon removed!!! [ more ]
Jan Dollar “...to hear it holds food for up to five days sounds unhealthy given the amount of food people can consume these days.” The primary purpose of the colon is to absorb water. It does absorb some nutrients too, but the lion’s share is done by the small intestine. So, it really is untrue that a colon is unhealthy to have. Dehydration is one of the primary issues associated with colectomy, so nobody will be advocating preemptive colectomies. Jan [ more ]
Former Member ❤️
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J-Pouch ForumsGeneral Discussion
Success story/motivation HELP
FM Former Member
NoColonKen I hope this wonderful procedure gives you relief from that horrible disease. I know some people have different results, but 40 years ago I was you. Early in my sophomore year, I started having symptoms of what I learned was UC when the symptoms got very bad. If I maxed out on prednisone, I had an almost tolerable existence, but the minute they tapered me back to less than 25mg per day, I would end up in the Hospital. By Fall of my 3rd year it was bad enough that I could not complete a whole... [ more ]
Glenys D Hi, I had my j-pouch in 1992, and yesterday a good friend reminded me how sick I was back then. I couldn't make it to her wedding I was so sick but my parents went along to the reception instead! She said it's amazing how well I've been now-a-days. And yes, I'm studying my PhD full-time and working in a casual job. I exercise and socialise and enjoy life to the full! Hang in there! The surgery changed me from a young person who didn't have the energy to work and volunteered only 1 hour/ week... [ more ]
Lesandiego It's definitely a "shock" to your normal healthy lifestyle. My colon was removed in emergency surgery @ age 49. Since then, I have had 2 pulmonary embolisms, congestive heart failure, 3 stents, and nearly lost my right leg in a car accident (now held together by pins and plates). Today, I have 2 new grandchildren, work a 30 hr per week, travel, walk up to 3 miles per day, foster senior rescue dogs, and enjoy gardening and DIY home improvements. That which doesn't kill you makes you stronger... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Gastritis
H Happiness4
Jaypea Stomach ulcers are sometimes caused by bacteria, helicobacter pylori and are treated with antibiotics. Has this been recommended to you? [ more ]
Former Member Your welcome! And I totally agree! Its weird how IBD affects soo much of our life, but then again, that is what makes us more resilient! [ more ]
Scott F Thanks - you learn something every day (if you’re paying attention). The gastritis treatment would be the same, of course. [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
pain with pouchitis?
duck11duck11
Funky26 Hi Jan - Did the abdominal pain stop and if so, what was used to stop the pain? Thanks [ more ]
Jan Dollar I had loads of pain with my pouchitis, particularly when it became chronic. I actually thought I had a hot gallbladder or bowel obstruction, but those were ruled out. Jan [ more ]
Funky26 Hello Duck11. I am experiencing what you describe with sharp abdominal pains. I also get blood but not much. What did you do to relieve the abdominal pains? Thanks [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
Looking for a J Pouch surgeon in NYC
DK Doug K
Katt I don't know if he even takes new patients because he's getting a bit up there in age (he's about 67/68), but Dr. Jeffrey Milsom at Weill Cornell in NYC is an absolute Godsend. He literally and figuratively saved my life tenfold... BEST OF LUCK TO YOU!!! [ more ]
Clairesmom Our family can recommend Dr. Feza Remzi. My daughter travelled from Georgia to have surgery with Dr. Remzi. She had 3 surgeries and now has a J Pouch. She trusted and liked Dr. Remzi very much and is pleased with his care as well as the excellent care at NYU Langone and at Tisch, the new hospital where her last surgery occurred. [ more ]
pammieskrh Remzi did my j-pouch redo. Very happy with results. Love Dr. Remzi! [ more ]
See all 15 replies...
J-Pouch ForumsGeneral Discussion
Potato Enjoyment
Lou PhillipsLou Phillips
Lou Phillips Haha, timing is everything, isn't it true. Brings back a fun/scary memory, in my early days of J Pouching I was told sweet potatoes are packed with nutrients. Very true. But - prior to that, I had only had mashed sweet potatoes one time, and loved it. I bought one, and thought mashing just one sweet potato made no sense so I baked it, added some salt and pepper, and some olive oil....and ate the whole thing, skins and all - like a regular baked potato. It tasted awesome. But then, I think... [ more ]
CTBarrister Good luck Lou! I saw this thread and it was ironic because I just bought the Yukon Golds today. The Russets are ideal baking potatoes due to the coarseness of the skin, but I think you can bake the Yukon Golds just as easily and handle the skins better because they are not as coarse and leathery. Let us know how this experiment works. [ more ]
lablover ❤️
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Butt burn
M MaryL
Former Member Amazing!!!! Do you ski or snowboard??? [ more ]
Former Member Yes I'm very lucky to live with no covid and a country with a great government and a economy that exports food so now food is cheaper and loads of toilet paper.we are short on rice and flour but oversupplied with fish,toilet paper and meat.I love New Zealand. [ more ]
Former Member Oh cool!!!! Lucky!!! I love your language over there! I know you guys speak English too but I love your English differences, soo cool! [ more ]
See all 31 replies...
J-Pouch ForumsGeneral Discussion
Potassium Supplement
M maddie18
Jan Dollar I have mixed feeling about this. I 100% agree that focusing on electrolyte replacement in the presence of severe diarrhea, particularly with short bowel syndrome. I also agree that consuming potassium rich foods and electrolyte replacement fluids are completely safe. People who have known advanced kidney disease know their limitations. My only concern would be for people who misinterpret a recommendation to apply to any source of potassium. We have a wide variety of people here and some may... [ more ]
Former Member Glad you are doing good! Potato chips help too [ more ]
Former Member ❤️
See all 13 replies...
J-Pouch ForumsPouchitis
Cipro isn't working anymore for my Chronic Pouchitis
F feirs1
sweet honey Just added t to a smoothie: spinach, protein powder, berries, McT oil(coconut oil) etc. Hide the taste!!! [ more ]
Former Member Do you like the taste of kefir??? I could not tolerate it unfortunately, taste wise. I eat Greek Yogurt a lot. [ more ]
sweet honey I also recommend the probiotic for pouchits!! It has really really helped me as well as kefir, saurkraut, chimchi...fermented foods great for gut health [ more ]
See all 20 replies...
J-Pouch ForumsGeneral Discussion
blood in stool
V vince66
Former Member Your welcome And Okay, hope everything works out, keep us updated [ more ]
vince66 thanks for the reply / my lower GI Dr says about what Jan says - give it a few days and if blood does not subside contact him again /// Physically I actually feel great - no energy issues at all / walk 3 mi each morning and 2 mi each afternoon (69 yrs young) [ more ]
Former Member If I were you, I would contact the doctor right away. Hope you feel better hon. Keep us updated [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Weight Loss Issues
SeirlaSeirla
Seirla I appreciate all the tips. I'm allergic to sugar substitutes, so I don't eat low sugar or sugar free products to begin with Aspartame and Xylitol are big no-nos for me even before I ended up with UC. My face swells up and I can't open my mouth for days. [ more ]
Former Member Thanks hon [ more ]
lclassen ❤️
See all 35 replies...
J-Pouch ForumsGeneral Discussion
Acne from Biologic or UC?
temotytemoty
Jan Dollar I have had these sorts of random pimple lesions. One time it was inside my nose and wound up being a major abscess that went into my lip. I have also had leg lesions that seemed like erythema nodosum associated with chills and fever. But it all seems so random. It has been treated on a case by case basis for me. I never was advised to stop my biologic except for the one time I was on antibiotics when my infusion was scheduled. In that case, it was just a one week delay. I suppose it could... [ more ]
Former Member I learned something new! Thanks! [ more ]
temoty My sister believes I have 'cystic acne' causing these boils inside nose sometimes and elsewhere. She is a PA. She also reminded me that UC has been linked to cystic acne. Anyone have this issue? What helped you? Thanks [ more ]
See all 4 replies...
J-Pouch ForumsOstomy & Skin
Multiple Stoma Sites
FM Former Member
Kushami ❤️
n/a If you go back to an ileostomy, an ostomy nurse will evaluate your stomach and help you determine what might be the best location for your stoma. I personally have had 4 stomas, and they've all been in the same site: #1 was an end ileo in '93 for colectomy; #2 was a loop ileo for jpouch; #3 in '17 was an end ileo when my jpouch was disconnected; and #4 in '18 when the stoma was unexpectedly revised during jpouch removal surgery, due to "kinking" behind it. Like you mentioned, the stoma is in... [ more ]
Randybw1 I'm no help here, I've had one on my right side and now my permanent one on the left side. There has to be someone that's had this done. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Foods
JK Joe King
Former Member So you have around 6bms I see. Have you expressed your pains to your gastro??? Or SUrgeon??? [ more ]
Former Member Hi Lauren I probably had four trips at work and two at home so far with bad gas pains.I had a hard job at work that didn't help.but I look around and everyone else is in pain as well.with either hip,knee,shoulder ,teeth,gout,eye or obesity,depression problems.not to mention the relationship and job, financial pains [ more ]
Former Member Lol, glad you are okay. How many bms a day do you have??? [ more ]
See all 23 replies...
J-Pouch ForumsGeneral Discussion
Back to work
PG Pauly gee
Former Member I think we should have that choice but life is not always fair. [ more ]
Former Member Should a Jpoucher have the choice between going back to work or disability? As I'm in pain most days now due to gas I think and am unable or feel bad telling my coworkers I'm in pain and the the pain can be bad.im trying to eat healthy but it's the poor diet that is less painful. [ more ]
Former Member ❤️
See all 28 replies...
J-Pouch ForumsGeneral Discussion
Covid and Zinc
JK Johnny K
Former Member Your welcome [ more ]
Johnny K Thanks for the replies, I appreciate it. [ more ]
Scott F None of this is proven, or even likely to help much. Some of it may be worth a try if it doesn’t cause you significant side effects. Stomach pain is a good reason to say “never mind.” If you want a proven treatment for early-stage mild-to-moderate COVID-19 then a monoclonal antibody cocktail, such as Regeneron’s bamlanivimab, is an option. They are inconvenient to take, since they require an infusion. Zinc *lozenges* (not capsules) might help shorten a normal cold, perhaps by reducing virus... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Problems While Sleeping
BE Brad Epps
Former Member Your welcome [ more ]
Brad Epps First off, thank you all for replying. I have been struggling mentally a bit as well and it is nice to have others who understand what is happening helping me. I very much appreciate it. Eliza, I will definitely look into the steel cut oatmeal. I normally eat regular oatmeal right now but I am willing to try anything that may help me. Scott, I haven't tried the fatty snack before bed but I will starting today. It makes sense why it may help. I already take two bowel slowers before bed as... [ more ]
Former Member I was having accidents sometimes at your stage in the game, but I think you should still get checked out to be safe. [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Can’t Do Takedown
DK Doug K
Former Member Happy to hear that [ more ]
Doug K Thanks - I agree. The good news is that my bowel has slowed down a little and I am feeling more optimistic about the J Pouch [ more ]
Tovia Hi Doug - I'm probably too late to the discussion, but two words... second opinion . It never hurts to go for second opinion. My husbands first GI was not listening to our concerns and thoughts on how to treat the UC. We went for a second opinion and found someone who would listen and engage in discussion. Lots of love, Tovia [ more ]
See all 20 replies...
J-Pouch ForumsGeneral Discussion
Hernia repair & mesh
SG Scrap Girl
JPouch2017 Long shot, but wondering if anyone on this thread who had a hernia repaired with mesh is still on the board and can fill me in on if they are having any issues? TIA! [ more ]
TE Marie You had a big hernia too. My surgeon opened up my surgical incision all the way to do the hernia mesh surgery and I woke up with around 14 staples and one incision. It sounds like he needed to cut you open more too. I had to stay over in the hospital 3 nights and was planning on less than 24. Did they put an abdominal wrap on me and I wore it for a few months. I don't know why they didn't have me use one after the surgeries. [ more ]
JenniferG correction, zero shoulder pain. I had plenty of pain but I dont think it was gas pain. [ more ]
See all 19 replies...
J-Pouch ForumsGeneral Discussion
Entyvio Didn't Work So Well
temotytemoty
temoty thanks so much everyone....I'm probably switching from Entyvio to Remicade soon. My Doc said she's seen plenty of patients take Remicade for a while and then go off for a while after they get better. So we will see...... [ more ]
Jan Dollar Well, this is a tough one. As you probably have noticed advice and experience varies widely. One person’s experience does not predict another’s. The advice can be helpful or not. That said, my take on the whole biologic issue has been that they are worth trying and the trend now is to use them earlier with IBD in general to avoid surgery when possible because they are that safe and effective. Most of the adverse effects are reversible when discontinued, and the lymphoma risk is quite slight... [ more ]
Former Member Whatever happens, I have faith in you, you will get through this [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
IBD and mental illness
JK Joe King
Former Member No matter what we say and no matter what proof we post, there is always going to be people that do not agree or say things against it as you can see. I am just happy that there are people on here that believe in the evidence and have positive things to say about the topic. I am happy there is a audience for it. Thank-you for your answer, it helped a great deal [ more ]
CTBarrister That's the question I have- how does advancing an explanation, tenuous or otherwise, advance or assist the treatment? I see lots of posts about causal relationships between mental illness and IBD but no posts on how any of that guides or assists treatment, in any way. [ more ]
Former Member ❤️
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J-Pouch ForumsGeneral Discussion
fistulas
B baredex
JHendrix My gastro doc also recommended biologics just to see if it would help heal the fistula even though no one (him, surgeon or me) really thought I had Crohn's. We all thought it was worth a try. Maybe it is for you as well. I truly hope you have success with it. [ more ]
baredex i actually just had another abscess drained yesterday. the doctor thought it might be a new fistula, but it turns out it wasn’t. both my colon rectal surgeon and my gi doctor want to put me on some form of biologics even tho my tests came inconclusive as to whether i have crohns or not. [ more ]
JHendrix Baredex, how are things going now. Do you have any better idea of what's going on for you? Any plans? Thanks for an update. Trishp, I also go through the cycles of settled and active but haven't been able to see any particular pattern. [ more ]
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J-Pouch ForumsGeneral Discussion
biologics- again
L LisaT
hanras I cycled thru all biologics oral and IV. If I were to describe them it would be: Remicade is the old school and rough Humira always tries but falls short Entyvio is the latest and greatest Stelara is too new to be trusted *Just my experience. I didnt include oral bc I did not tolerate any for more than 60 days. I have heard great things about all of them but remicade was the worst with side effects for me. [ more ]
jenners Following. After about 20 years with j pouch just had massive reconstruction surgery on it, feeling great after but scope today said loads of ulcerations and the stricture the surgery was supposed to fix is bad again, 3 months later. They are saying Crohn's and advising to go on biologics immediately [ more ]
jenners ❤️
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J-Pouch ForumsGeneral Discussion
Silly question - gas
B Bubba1028
Bubba1028 Oh dear- so sorry to hear that! I guess you’re looking on the bright side! I hope it’s resolved soon! [ more ]
JHendrix I have a pouch vagina fistula. There is an upside to everything! I don't have to worry about getting to a washroom or lying down to pass gas. It blows right though the fistula. Oh lucky me. I have absolutely no control over it and it is horribly embarrassing sometimes but at least I don't often develop those horrible back up gas pains! [ more ]
Former Member ❤️
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J-Pouch ForumsPouchitis
Does this sound like Pouchitis?
Cinder23Cinder23
Cinder23 Haha thanks Lauren pretty sure I know what the flu is. Also had a flu shot this year. I have no fever or nausea. It’s not the flu [ more ]
Former Member Sounds like the flu? [ more ]
michhebe I have a J pouch since 1998 I'm not sure what you have but does not seem like pouchitis to me. Not sure if this will help you any later but I have had pouchitis about 5-6 times a year since 1998 but controled fairly well with cipro but since about 2 years i've been using calmoseptine ointment and always place toilet paper on the exit to absorb moisture and I have not had any pouchitis since (about 2 years now). Not sure if it's the reason but I do not suffer anymore since doing that. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Can a Jpouchers give blood?
FM Former Member
Former Member ❤️
Former Member Totally makes sense, especially it being autoimmune disease too! I am afraid of passing it to someone since it is in our DNA [ more ]
TE Marie UC here=== wasn't allowed to give blood. even though my colon was gone. The said it was because it's a bleeding disease. [ more ]
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J-Pouch ForumsPouchitis
Can you have Pouchitis even if scope says pouch looks ok?
F feirs1
Former Member Okay if that does not work, there is always Remicade as a possibly option. [ more ]
Scott F When maintenance Cipro stopped working for me after about 6 years I got very good results from adding Flagyl. OTOH one drug is better than two, all other things being equal, so I hope the Augmentin works for you. [ more ]
feirs1 I am on maintenance Cipro. He want to try Augmentin now. [ more ]
See all 5 replies...
J-Pouch ForumsWomen's Health & Pregnancy
C- Section Moms- How long until you were up and moving?
linalina
KS I had my Csection after Jpouch (I have also had a Csec before Jpouch). It wasnt much different. No leakages nothing. They dont give you epidural for scheduled C, but its anesthesia/morphine combination. My take has been clearly, dont think too much, sometimes ignorance is bliss. Enjoy you pregnancy . Congratulations and good luck. [ more ]
JPouch2017 I had two vaginal deliveries with epidural prior to my jpouch and then a c-section post jpouch. It did not take me any longer to get up and moving post c-section than it had for my other deliveries (a few hours)- whatever they used took basically the same amount of time to wear off! I had no bathroom issues post c-section. The biggest issue for me post c-section was following the guidelines to take it easy because after all my j-pouch related surgeries the c-section pain was no big thing. [ more ]
Former Member ❤️
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J-Pouch ForumsGeneral Discussion
Dr. Shen doxycycline/glucose to heal sinus
M Momma
Momma Well we are here now at Dr Shen. My son thought that it was worth trying as it’s relatively harmless with minimal risks. My son’s sinus is not part of his pouch as his pouch was removed, twice. It’s a blind/ dead end sinus at the rectum that doesn’t connect to anything but it still leaks. Remzi can do a flap surgery but it is huge surgery with many risks and long recovery so he will give this a try. I’ll post back later if it works or not. [ more ]
Pouchomarx he typically does that for bleeding, which he has done those for me in the past for that issue. I had a sinus with my first jpouch and he performed several needle-knife therapies for that. I would ask him to clarify as a glucose/doxy will not fix a sinus. [ more ]
Former Member Definitely trust Dr. Shen, that man is amazing!!! [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Need GI in Fort Lauderdale
AP Al P
JanW2 Hi, I recently saw Dr Leyla Maric at CCF Weston and she does see pouch patients. Was only my first visit but she did take her time and was knowledgeable about pouches, both Jpouch’s and even K pouch’s, which I have had both of. Weston is just outside of Ft Lauderdale Are you new to the area? Be glad to be in touch with you, Janice [ more ]
Former Member ❤️
Former Member Are you willing to travel to Tampa, is that possibly an option??? [ more ]
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J-Pouch ForumsGeneral Discussion
Injury while having ileostomy bag- Hernia?
J JoeJoe
Former Member So great to hear that!!!! I cannot wait!!!! Ostomy belts work wonders! Definitely less leaks!!! And a better seal!!!! I am doing great! Just celebrated 11 years of having IBD [ more ]
JoeJoe thank you. The appointment went great. The other day I got an ostomy belt that worked wonders. The surgeon said I'm fine and still on schedule, thank god. I hope you are doing well too. [ more ]
Former Member ❤️
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Jpouch removal
R Rborth
Former Member I am sorry to hear all of that! I do not blame you for wanting to get it removed, I would do the same thing this point. Do you want an ostomy or K-pouch??? [ more ]
Rborth I have several fistulas and a leak in my jpouch that has created an abscess near my tailbone. I have a rectal vaginal fistula with seton placement, that still causes pain and has bleeding and stool leaking. I recently had a drain tube in to try and drain the abscess near my tailbone, once they removed that they put in stints in the three openings my jpouch has so that it will drain back into my jpouch instead of that area near my tailbone. After the stint placement, it migrated and started... [ more ]
Pals What issues are you having ? [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Pepperoni pizza
JK Joe King
Kmiller I eat pizza all the time with no issues. I generally just do meat, no veggies. [ more ]
CTBarrister I have no problems eating pepperoni or any other kind of pizza but I do try to limit my consumption of carbs. Also, I have tendency to binge eat with pizza and ice cream so I really try to pick my spots. I was able to recently limit myself to trying one slice of pizza when my firm ordered pies from a new local pizzeria. But it's not easy for me to do. I was helped by the fact that the new local place was average by the standard of local New Haven style pizza, which is world famous. If I go... [ more ]
Former Member ❤️
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Recent Medical/Surgical Research Studies/Findings...
Randers.USARanders.USA
Former Member Thank-you so much!!! I think these articles are excellent proof that even though our colon/rectum is gone, we still have autoimmune disease too. Surgery is not a cure. Hopefully one day there will be a cure. I have donated lots of money and started a fundraiser to find cures, hopefully one of those dollars will find the cure! Love the articles, I am going to bookmark them [ more ]
Former Member ❤️
ytcrockpot Thanks for sharing, apparently my doctor was one of the researchers on this NYU study. It’s gives me hope! [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Jpouch- the second of the three step surgery and pain level?
J JoeJoe
Newdad5152 That’s great that you’re getting healthier! This may turn out to be easy peasy...truly hard to predict. Even when it’s challenging, a few months later it becomes a distant memory. Keep up the spirits and I’m sure you’ll be fine! And if the ostomy is leaking - try a convex with a tight belt! Totally changed the game for me. [ more ]
JoeJoe Hope you get well soon. I'm getting a little nervous about the second surgery coming up in a few weeks but I'm also looking forward to getting it done. Some scary stuff you went through. I've been trying to do everything to stay healthy and get ready for this. I walk every day, eat well and dropped 5 pounds because I was gaining weight. Thanks. [ more ]
Former Member ❤️
See all 9 replies...
J-Pouch ForumsHelp! Need advice now!
Pouchitis?
Bent-ArneBent-Arne
Former Member Maybe go for a long walk or don't eat red meat.or chocolate is like liquid lava [ more ]
Bent-Arne No, not really. Eating the same as usual. But I'm probably eating way to much sugar... [ more ]
ytcrockpot Are you eating anything different? Taking any new meds or vitamins? Sometimes the slightest thing we ingest can cause havoc on our system, either diarrhea or very formed stool. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Issues with my J-pouch
A aprils77
Former Member Oh my goodness!! I am sorry you are going through this. I see this quite a bit on here. I hope everything goes well and please keep us updated on what the surgeon says. I will keep you in my prayers, good luck on Wednesday Hon [ more ]
Former Member ❤️
See 1 reply...

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bjohnson@j-pouch.org

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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