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J-Pouch ForumsGeneral Discussion
Extended Release
SM Sara Marie
Sara Marie Thank you. Good information. Right now I'm going down an autoimmune disease research path. I wish the medical system had come to a conclusion about whether UC was AI or something else. Guess it's not important enough? Or maybe it's sometimes AI and sometimes not? [ more ]
lclassen I've had problems with meds that weren't extended release also. Pristique came out exactly the way it went in (lol). Even fished it out to be certain and it was still a perfectly formed pill! I stay away from any meds that have any coating on them at all. I usually ask the Dr or Pharmacy for meds that are meant to be dissolved in the stomach. I've found that capsules work well for me as they dissolve allowing the medicine to be easily absorbed. [ more ]
New577 I don’t know if enteric coated is part of it, but the mybetriq definitely is listed as er. the SloFe description is slow release to avoid GI issues. It worked fine pre colectomy. not so good post colectomy. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Rulid causing diarrhea.
V van
Sara Marie Internet says: "What are the side effects of Rulide 150 mg? Side effects such as stomach pain, diarrhoea, headache and gas can be experienced while taking Rulide Tablet. These side effects are temporary and resolve on their own, but if it worsens visit a nearby clinic or hospital. May 30, 2023" [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Calprotectin off the charts
Y ytcrockpot
ytcrockpot No, I’m just not responding as well as I did to budesonide. Been taking it on and off for a while now. In a couple of weeks they will start me on Entyvio. Praying it will work [ more ]
van Hi. I am curious to know, did you Dr think the Budesonide was responsible for increasing your calprotectin?. [ more ]
New577 My GI doc loves this test as it gives an accurate picture of overall GI inflammation. I once hit 1200 during my UC colon days and 700+ post IPAA surgery. My last test was 64. I take canasa daily. please keep us posted as to your meeting with doc as I am curious what can be done besides biologics, which I agree with you I would not like to ever entertain as a treatment. If I had to I would, but as a very very last and only option. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Hip replacement
E Enterin
Enterin Thanks everyone for the answers. I am currently researching materials. In state hospitals in Croatia, only Metal-plasty is used, and the same prosthesis is fitted to a 20- or 70-year-old patient. Due to his age, he would need another operation due to the durability of the replacement hip. [ more ]
jan15 i had both hips replaced in the oughts, when i then had a j pouch. no problem at all. be careful about infections, even after you are post surgery. i developed septic infection and both needed to be replaced. i downhill skiied for awhile, even kept up rollerblading. as i got older and had shoulders replaced and back problems i scaled back to cross country. my suggestion is to work diligently w your physical therapist and develop strong muscles on both hips and legs, along with maintaining... [ more ]
Kara Fred Hi Enterin, I had my first hip replacement at age 45 in 2017. I had my second hip replacement in 2021. I considered it a standard replacement. This means my PT, pain management and walking assistance was how most patients are treated (except some geriatric patients) and it went smoothly. After your surgery, you are literally walking same day or the next day. I only stayed 1 night in the hospital for both surgeries. It shouldn’t risk or affect any part of your Jpouch. I have a Kpouch and... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Need a new J-pouch Colorectal doctor at the Cleveland Clinic
Pilot DebbyPilot Debby
Pouchomarx Dietz at University 100%. He was trained by Dr Remzi and is head of colorectal there. When Remzi left Cleveland for NYC hes told me Dietz is the only doc he would recommend [ more ]
MishelLee Dr. Megan Costedio at University Hospitals in Cleveland is an amazing surgeon. [ more ]
Jfill21 I had my pouch surgery at Cleveland Clinic in 2017 with Dr. Hull. I chose her after reading her PubMed articles, lecture videos and reading patient reviews. She’s been at CC a long time. I found her to be extremely patient centric, and I was impressed by how the nurses and staff respect her. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Digestive enzymes to reduce gas?
SM Sara Marie
Former Member ❤️
Sara Marie I may try the hot water and lemon in the future. That's a nice, cheap, ancient remedy. I have heard it is prescribed for balancing the liver and excessive heat in the body, but not sure what else it does. [ more ]
jhills I’m an ulcerative colitis patient, Jpouch surgery 23 years ago. Recently I tried something life changing for my digiestive system. No drinking at meal times. I wait 45 mins after eating to drink all liquids. Drinking while eating reduced my stomach acids trying to work. Now my stomach acids can work 100% and my stool out out is thick consistency and I maintain good weight. Also years ago I had to eliminate dairy and gluten because they flare up and make my pouch and intestines bleed. I drink... [ more ]
See all 40 replies...
J-Pouch ForumsGeneral Discussion
Severe cramping
KO Ken Olivet
jhills I second all the above comments. Adding to this, I had to eliminate all dairy, beef, gluten for 30 days, Very hard!! Because all these foods cause inflammation and irritate intestines. I then added in one thing at a time to see what my system barked at. A high percentage of us bowel people have a diary and or gluten intolerance. I’m living my best life with my jpouch though in the end. Don’t give up trying to figure out your system. [ more ]
Ken Olivet Thanks. What dosage do u take [ more ]
Scott F The usual anti-spasmodic are Bentyl and Levsin. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Post op living alone
L liza_s
CTBarrister Liza, I applaud you for your independence in moving out and living alone. Back in 1992, I was the same age when I had my surgery. I didn't move out immediately, and I am glad I didn't only because I had a few weird complications that sent me to the hospital, which you are unlikely to have (one was a sodium overdose for binging on high sodium foods 30 days after takedown, foolishly thinking it was OK to do so, the other was a blockage from eating too much coupled with post surgical... [ more ]
New577 Congrats on your “easier” recovery. It’s good to hear positive stories. best of luck on your next “takedown” surgery. [ more ]
Kushami ❤️
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Active Pouch With A Cold
JR Joe Rosati
Former Member ❤️
Derrick I just saw this thread. I just got my first cold with a jpouch and it become for active and gassy. Also urgency went up. I’m recovering and tail end of illness but pouch and frequency is not where it was before yet. How long did it take for you guys to get back to where you were? [ more ]
Joe Rosati Mark - I do notice I like to lay around and nap more when I have a cold or are sick. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Weight lifting after j pouch excision
T Teddy92
BK 123 ❤️
SteveG I'm taking Cipro and Flagyl for about 3 years now for chronic pouchitis. I reduced stepwise to half a tablet each (250 / 200 mg). Recently I found that taking them every other day is sufficient and perhaps even a little better. So a small microbioma seems to be fitting best for me, too much antibiotics over a long time may produce resistancies. I never needed to cycle antibiotics. When I had a c. diff. infection years ago while on a full dose of Cipro and Flagyl for 4 weeks, it was treated... [ more ]
Teddy92 Thanks SteveG, yes, I have already explored SIBO with my GI. I’ve been on all those antibiotics for it and it seems the symptoms recur either whenever they are stopped, or when the antibiotics wear off while still taking them, despite cycling them. I don’t know if there is some sort of optimal cycling schedule for antibiotics, but I have not been able to come upon one in my own experience of taking them. I’ve also had pouchoscopies which have found inflammation consistent with pouchitis (if... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
J-Pouch, Crohn's, and Probiotics?
R rickyb14
dd ❤️
grateful Thanks for the explanation. If I think about that makes sense. Thanks Scott! [ more ]
George Shaikh Thanks Scott. My GI is well aware of my high constipation with Flagyl/Cipro. I have used Miralax before and it did not help with the constipation the antibiotics do to me. I will talk with my GI again about other possibilities. I agree with Scott on his explanation for psyillium husk. [ more ]
See all 26 replies...
J-Pouch ForumsGeneral Discussion
Humira and side effects - constantly sick?
PaulinaR88PaulinaR88
colonelius extremely same. Now that I have a toddler in day care I get sick like all the time including gastro issues. It's calmed down a bit but I was off humira for a few weeks when I had to change insurance and noticed that I actually felt better overall. I'm back on now and keeping a close eye on this. [ more ]
Breezie I've been on Humira for years (and prior to that, Enbrel and Remicade) and didn't have an increase in colds or flus, but I was incredibly vigilant about not touching my hands to my face or sharing pens, pencils, keyboards, etc., with co-workers, etc. That all changed when my son came along. Nothing like a kid in daycare part-time to build his immune system and knock down mine! It seemed that every minor thing that he brought home turned into a major thing for me. There was just no way to... [ more ]
Jan Dollar I was on it for several years and saw no difference. It could be that you coincidentally caught a cold the same time as you started the Humira; it is that time of year... Plus, these drugs can lower your resistance, so it can take longer to fight off viruses. On top of that, once you get sick (with or without Humira), your resistance is lower and more likely to catch the next bug that comes along. It looks like you are doing what you can to get over it. According to the prescribing... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Can we get overflow diarrhoea with the j-pouch?
K Kushami
Sara Marie I find that psyllium husk powder with plenty of water can be a pretty good gut output consistency regulator. Aloe juice seems to help, too. Those side effects sound very unpleasant. I wonder if there is another medication that would address your issue? [ more ]
Kushami Ah, good point. Hadn’t thought of that. I’m taking a medication that can cause constipation and overflow diarrhoea as a side effect in “normal” people. I’m having problems and am trying to work out whether it’s likely to be the medication. (It’s a calcium-channel blocker, diltiazem, and constipation plus overflow diarrhoea are listed in the side effects.) I’m having normal BMs most of the time but I’m getting occasional bouts of nausea, feeling hot, heart rate going up, and an angry and very... [ more ]
Sara Marie I imagine it could happen with a partial blockage. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Ability to pass gas while standing
N Nirav
BDW It took about 15 years after surgery (have had pouch since 1997) but I can occasionally pass gas while standing. I still remember the first time :-) [ more ]
Sara Marie Every once in a while I can let a bit of gas while upright through without any mess, but that is always a surprise. Lying on the side, belly, or inverting is my most reliable way to do it mess-free. Unfortunately, it's really difficult to have a subtle fart when you have to get in a special position to do it! I remember the sweet old days when I could stink up an elevator right before exiting. Sigh. [ more ]
Kangaroo Fortunately, I can. Passing gas is a very similar experience to when I had a colon. The only difference is when my pouch gets really full, I have trouble passing gas and it just builds up until I go to the bathroom. (This isn't common, though). [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Visbiome
A Almac
Mrs P Hi, I take VSL#3 which is the same/similar. I take 1 capsule 2x daily. The powder is sorta yuk. I think other people take quite a bit more per day. I’ve been taking for several years and I do find it to be helpful. I was experiencing pouchitis more often before I started taking VSL. Quite frankly, I’m afraid to stop taking it! Lol Best of Luck to you! [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Syncope with full J pouch
J Jefferson
Jefferson Kushami I'd love to hear about your experience with autonomic dysfunction. I don't claim anything just relaying what my doctors claim. Do you experience syncope with your gastroparesis? [ more ]
Sara Marie Can you tell me more about how autonomic dysfunction manifests itself in your body? I'm very curious about this. Also, do they say what caused it? Did it cause your digestive issues? [ more ]
Kushami I have autonomic dysfunction so I know a little bit about it. I didn’t quite understand this bit: ”They tell me I have Autonomic dysfunction but never seen with syncope's and think they are not associated.” Autonomic dysfunction can cause syncope and odd near-syncope incidents, if that’s any help. Although it sounds like dumping syndrome may be the explanation. Sorry to hear you are going through this and hope you can get it sorted out. [ more ]
See all 14 replies...
J-Pouch ForumsGeneral Discussion
Dehydration/headaches in the AM
B Bubba1028
Former Member ❤️
jan15 Louisa Have you tried coconut water? I’d be curious if its transit time, so to speak, through your system is slower than water. Dietitians, and a former G.I. doctor have suggested it to help combat dehydration because of better absorption. Many with IBD are lactose intolerant, which eliminates the milk option. do you drink herbal or caffeinated tea? Coffee usually clears a headache. dehydration is serious stuff. There are days I can’t drink water and other days when too much is not... [ more ]
Louisa Thanks Jan for your thoughts. I was in your comment on milk staying in your system longer than water. My problem is as soon as i drink water i need to turn and pee it out. Where as milk stays in my system longer. Maybe too when i stated in another msg that a cup of tea with plenty of milk tends to help my headaches. Thanks for your post Jan. [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Pelvic pain/cramping
GM Gina M
SadieM1210 @Gina M What you're describing sounds like your muscles contracting to help push your food out. When I feel these contractions they can be very intense and painful. Sometimes they feel like cramps in my pelvic area and other times it feels like lower back pain. I guess the more sever your inflammation is the more intense your pain gets. Mine is definitely more intense. The only thing that seems to help me is Oxy. [ more ]
Sara Marie Yes, I have pelvic and lower back pain sometimes, but it usually doesn't result in cramping or spasms. I take this as a sign that I need to revisit pelvic floor exercises. If that isn't enough, my acupuncturist has prescribed me "Return to Spring" tea pills (Plum Flower brand) to support the pelvic floor lifting the exercises provide. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Anyone using Rinvoq
RondaCRondaC
Karenchase Chiming in late to this party. After a year of waiting for it to be approved in the US for Crohn's (my current diagnosis is post-colectomy Crohn's, not pouchitis) I started Rinvoq about 3 months ago (June 2023) and I started it only a few weeks after my last Entyvio infusion. I felt all right at the beginning -- nothing revolutionary, just not gross. Then, I think, the Entyvio started to wear off and I was having some pretty nasty symptoms -- wicked gas and bloating, and my butt was on fire... [ more ]
RondaC Yes I'm still happy with it. I still have a flare every now and then but I don't have any pain just liquid output. I definitely feel better. [ more ]
Angieb Hi Ronda its 2023so I’m pretty late regarding your post! I tried Rinvoq back in September 2022 for about 2,weeks however needed surgery so had to discontinue! I’ve started it again as of 3/28/2023 so too soon to kno! However would like to know if it’s still working for you! How long did it take to kick in! I too suffer from chronic pouchitis and nothing was helping [ more ]
See all 17 replies...
J-Pouch ForumsGeneral Discussion
Fistula and seton
JA Joey A
Joey A Thank you, Scott! [ more ]
Scott F A draining seton is likely what she has in mind (as opposed to a cutting seton). A seton is a loop of a flexible thread that passes through the full length of a fistula and completes the loop outside the fistula. For a perianal fistula the inner opening might be somewhere along the anal canal, though fistulae can also follow complicated and branching paths. The idea is to keep the fistula open so fluid doesn’t build up and cause painful pressure. It can be difficult to locate the internal... [ more ]
Joey A Hi Scott, I'm 99.9% certain that she said "seton". What do you know about this procedure? Thanks! [ more ]
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J-Pouch ForumsGeneral Discussion
Jpouch suregery and other internal organs
M msh98991
tulsamom I could see why the gallbladder would be not in the right place for an ultrasound because of the J-pouch. If your J pouch grew really big and up the abdomen on the right side, like mine did, it could obscure the view. And if the Jpouch got really big, it can twist and cause symptoms like partial instructions. I’m not saying that’s what happened to you. But it’s a possibility, because it happened to me. Good luck with everything that’s going on. I’m sure the MRI will reveal some thing that... [ more ]
msh98991 Thank you Scott and Jaypea for your replies. I didn't think our altered plumping could possible be in the way of the gallbladder but needed to know dfor sure. I've never thought about where exactly it all is now but I assume it's similar to where it was when I had a colon. Enjoy the day! Peggy [ more ]
Jaypea I had a similar issue with an ultrasound. Because I no longer have a large intestine my internal anatomy is slightly different from the average bear. The ultrasound tech had a little difficulty navigating as the usual landmarks were gone! Our j-pouches are no where near the gall bladder and should not obstruct or block the view. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
BOWEL PROBLEMS
MIKEEYMIKEEY
MIKEEY Hi Katey- You must be very handy by installing it, that's really great, I cant even hang a picture. Thanks so much for shearing, have a beautiful day. Best regards, Mikey [ more ]
katey After many years I finally got a bidet seat. I can sort of give my self an enema that way, just have to sit in the right position. It helps to clean things out. I installed it myself and didn't need electricity. [ more ]
Sara Marie ❤️
See all 14 replies...
J-Pouch ForumsGeneral Discussion
Afferent Limb
JA Joey A
Sara Marie That referred pain thing is so vexing when a person is trying to figure out what's going on in their body! [ more ]
Scott F We don't always feel pain exactly where the trouble is, but the afferent limb is part of the J-pouch and is located in the pelvis - basically at the bottom of the torso, below the abdomen. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Keto and Pouch
I Indy_Dave
Jaypea I follow a semi-keto diet. I try as hard as I can to do zero or no carbs because I feel I have more energy, my joints ache less, I think more clearly and just overall have a healthier outlook. HOWEVER it does increase frequency and butt burn. When things get uncomfortable I have a carb meal or increase my carb intake. I also have to make sure I don't lose too much weight. I'm down about 20 kg and don't want to lose any more. I do not have IBD and have my pouch as a result of an extremely... [ more ]
Sara Marie I tried Keto for a while and I noticed the same thing. And then I noticed my blood felt thick and sluggish in my body which made me feel like there was extra gravity. So I stopped it. I have known other pouchless people who tried it for weight loss and it worked initially, then not. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Medications for Crohn's disease
SC Sheila Cohen
BK 123 Hi Sheila, I've been on Humira for a little over a year now for chronic pouchitis. My pouchitis is behaving like Crohn's and I developed a fistula, which resulted in being prescribed Humira. It has been working great for me. I've cut down my bathroom trips from ~15/day to 4-6x during the day, twice at night (depending how much I eat at dinner and how many hours before bedtime). I still have the fistula but it is manageable - little to no pain there with minimal drainage despite being an open... [ more ]
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J-Pouch ForumsGeneral Discussion
SIBO and ommeprazole (hoping to stop the ommeprazole)
ehbraunehbraun
ehbraun I can’t actually say anything for certain, because my symptoms change from day to day, with apparently little explanation. But my insurance wouldn’t approve xifaxan, so i took something else… i forget right now exactly what. After the course, i started loading up on pre and probiotics, and didn’t resume the ommeprazole unless i really need it. I now take Ommeprazole about once or twice a week, sometimes less. But i do have the occasional sleepless night with a yucky stomach. I think what... [ more ]
Karrine Ellen - I would love to hear more about your SIBO journey. After years (16+) of ongoing concerns I finally have a great gastronologist who diagnosed SIBO but as soon as I stop the Xifaxan all the pain and symptoms come back to a debilitating degree. I am starting to look at diet and anything else I can do to help get my quality of life back. [ more ]
ehbraun That’s all very, very helpful! Thank you. I’m definitely in the middle of a rebound situation, and even my usual high dose isn’t helping. Yuk! [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
App for tracking food and bowel movements
T tshirt
SteveG @tshirt I would not focus on diet but visit a doctor if bleeding is happening regularly. If the blood is looking bright red then it is fresh and likely to originate from the pouch or anal region. If it is darker or black, then the small intestine or stomach are more suspicious. If you feel unusually exhausted you should also have your iron blood levels checked. [ more ]
Ryan138 I hope the app can help you find if a food is the cause of the bleeding..keep us posted [ more ]
Ryan138 I use a poop tracker app..works good [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
8 YEAR VEGETARIAN REVIEW ALL DONE!!! READ AND ASK ANY QUESTIONS :)
FM Former Member
Former Member ❤️
Former Member That is amazing!!! I am glad about people doing things like that for moral reasons. Same with me for being vegetarian for 8 years. I tip my hat you for being vegan, I hope you can do a review as well and even a "What you eat in day" menu too! [ more ]
AnthonyA Overall yes, to save animals suffering. That it also seems healthier is a bonus. I will see if the pouch health stays good. 25 years of pouchitis to become clear (ish) in a year is pretty dramatic. If it lasts a few years, then the only thing I can put it down to, the only change, would be the diet. [ more ]
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J-Pouch ForumsGeneral Discussion
Upcoming surgery
stlindenstlinden
Len78 You had a mucosectomy @Pilot Debby since you say your jpouch was stapled lower..they took your cuff. I.may need that bc as someone with familial polyposis I have polyps in my rectal cuff..just had.an endoscopic mucosal resection in April. Due for surveillance October 10 again after last set of scopes were done April 20.. Len [ more ]
Pilot Debby After I had j pouch surgery I continued to have UC in my rectum. About a year later my rectum was removed and they had to re-staple my j pouch down lower. And yes you are right it does support the vaginal wall but I have gotten along fine without it. I do have some seepage once in awhile but that is usually if I do not empty my pouch enough. I doubt you will have sex for awhile after the surgery. If you are healthy I would say 6 months at least but then I am not a doctor. [ more ]
stlinden Thanks Pilot Debbie. It will be a two stage surgery. I am more worried about sexual function/pain after surgery. The rectum is not only for holding waste, but also helps support the vaginal wall, so that is a concern. I know it may be selfish, but sexual activity is important to me, as we just got my husband's health back in good shape, and we enjoy a pretty active sex life, sorry don't mean for TMI. I also do not want an obstruction. I know my mom had one after her IRA procedure 40 years... [ more ]
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J-Pouch ForumsGeneral Discussion
Secondary Addisons
GEB56GEB56
Mcalen Hello! I have also developed steroid induced adrenal insufficiency from taking steroids for UC, and I now have a pouch. I would like to tapper down when my pouch is stable. There is a support group on facebook for people with steroid induced adrenal insufficiency, who have developed this due to steroid use for various kinds of conditions (further to UC). You can see many useful posts there. AIT&R - Adrenal Insufficiency Tapering and Recovery | Facebook Some key points from my personal... [ more ]
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J-Pouch ForumsGeneral Discussion
Leakage and incontinence
W WendyK
Pouchomarx I am just going by what Dr Shen suggests from his research. I agree Cipro works well as I have taken for years. I do have neuropathy now but no idea if caused by the Cipro.. I cant take flagyl as it makes me very nauseaus , but i have no issues with tindamax. [ more ]
WendyK Thank you all!! [ more ]
CTBarrister I agree that Cipro should be 1st choice, and failing that Cipro and Flagyl in tandem as they are two very different antibiotics from different antibiotic families and work on different types of bacteria thus providing "shotgun" protection against all potential bad bacteria. Ciprofloxacin is a fluoroquinolone (flor-o-KWIN-o-lone) antibiotic , Whereas flagyl aka metronodazole is a nitromidazole. As my GI says they provide "different coverage." But in tandem they provide more coverage. To use a... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Vegetables_Cucumber and Tomato
E Enterin
Former Member ❤️
New577 I am surprised to hear that a breakfast/lunch item is affecting nighttime sleep 12-16 hours away. I am 2 years into this and try to follow a pragmatic approach to food choices. - when I can eat - what I can eat - how much I can eat at this point I pretty much know with good degree of certainty, based on the above, how a particular food is going to work with my body and I act accordingly. [ more ]
Scott F Some foods do have more insoluble fiber, and that will add volume to the stool. A J-pouch isn’t very large. OTOH, if your stool is too liquid it can tend to increase frequency, and something like psyllium husk, even though it adds bulk to the stool, can help. [ more ]
See all 2 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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