Former MemberAgree with everything you said. Even ostomates climb [ more ]
JaydogIn the beginning when I was first on the site it was very discouraging because 99% of the people posting were talking about problems they had. But after talking with a few people and them telling me that most people who are doing good aren't on this site anymore. That made sense to me. But yes as far as being healthy and enjoying life I am doing great. I work out every day. I'm actually doing a 5k marathon with my son next month. [ more ]
Arty1Obviously everyone is different, but for a visual, my surgeon told me the capacity is approx. the size of your fist and will stretch/increase slightly over time. [ more ]
Former MemberThe length of the J-pouch varied between 7 and 25 cm (mean 10.6 cm), the mean a.p. diameter was 4.4 cm (range 1.5-12 cm), and the mean transversal diameter 5 cm (range 1.5-10 cm) . My pouch is 5.9 inches (15cm) long. I found out by looking at my medical records. [ more ]
Former MemberYeah there are a lot of antibiotic dependent people on here, its very common in people with chronic pouchitis. Its unfortunate and I am sorry you have to go through that. If you ever need support there are people here you can talk to that are antibiotic dependent. Congratulations on adopting a baby!!! I wish more people adopted because a lot of children need homes and families. I am sure you will be great!!! Yeah we all have crosses to bear and crosses to carry, God will help you carry them! [ more ]
OscarThePouchI saw this got some action recently, so I wanted to post an update. I think the issue with the pain and constipation was that I shouldn't have ever been off of antibiotics. I am a forever-Flagyl person I think. I've accepted it. I think I have a better chance of getting off my mental health meds someday than Flagyl. I hope that's safe. But this is my life regardless. We're adopting a baby in October. I pray everyday that we can do this and that I will do a good job. I also think the PTSD is... [ more ]
Kushami@Sara Marie , I did seem to be having some improvement with DMARDs, but then I had to stop taking them in order to do a “medication washout” for testing. Then the testing ended up taking six months to organise. So I haven’t been able to get a proper run at it. Testing is next week. If it goes well, I can restart everything. [ more ]
Dutchie@Kushami I never knew this was a thing either. I'm learning a lot lately on how far the tentacles of these bowel diseases reach! @Sara Marie I had my pouchoscopy today. The intake nurse told me that every doctor seems to have different instructions for prep. I had to take 2 dulcolax tablets then 1 pouch of pico-salax and plenty of water. No enema thank goodness. I don't like them. And am knocked out. Anyway it went well and everything looks great 30 years in. Since he arranged for my gall... [ more ]
Former MemberOh good! Glad your okay!!! Definitely keep me updated on things. I hope you can see Dr. Remzi before September! [ more ]
tulsamomThe pancreatitis just cause a short hospital stay sometimes the year before my first surgery in 1999. Thanks for your concern! [ more ]
Former MemberOh that makes sense lol. The first biologic came out in 98 for our disease. And damn!!! You see, these drugs have way too many side effects!!! Its ridiculous!!! Is your pancreatitis better now??? [ more ]
Former MemberDo not be embarassed, there are not stupid questions at all. I would not recommend sticking anything up there, including butt plugs. You should never be embarassed to ask your surgeon these questions, these questions are perfectly valid. They would actually be the best person to answer this so they can answer your question more thoroughly since they are the experts in this. Do not put a band-aid over a problem, get it checked out before the problem becomes bigger. [ more ]
Former MemberSugar also helps you absorb electrolytes too! [ more ]
Former MemberDamn if you do, damned if you dont haha! So true!!! It sucks but it works. If you sodium falls to low, the hospital will give you salt IV anyway, that happened to my dad even though he has high blood pressure as I mentioned above. Just keep an eye on things and make sure your levels are normal. Glad your feeling better though. Just remember that you lose vitamins, minerals, and salt with each diarrhea episode you have, just keep that in mind. Love your Bible quote too!!! So positive! [ more ]
therealstingerDamned if I do damned if I dont, lol, but Im still kicking, for now anyways. I just got fluids this evening with vitamins, feeling some better already [ more ]
Former MemberOh good! Glad to hear that!! Water and diet is key!!! Sorry about the restricted diet. The beauty about the human body is that it can adapt to anything, that is the main difference between us and trees- trees need a good environment to adapt and we do not because we can fully adapt to anything. I truly believe over time you will be able to adapt to the restricted diet even though it can be depressing. When I first went vegetarian, I was hungry all the time too, for months!!! But over time my... [ more ]
RB15Yes i do drink water alot more now, i can control the blockages with diet but it’s really depressing being on a restricted diet, im hungry all the time! I have already had the pouchoscopy, he couldn’t see any issues and the intestine and pouch looked great Thanks [ more ]
RB15Ah ok that’s very interesting to know that there is still a large portion of small intestine that can’t be reached, he has mentioned the capsule endoscopy before but said he would never have me do it due to the risk of it getting stuck. Maybe the barium swallow is something i should suggest to him instead. I’m in a frustrating position of not being bad enough to warrant exploratory surgery to look for adhesions, but also i’m on a restricted diet which is a bit depressing after a while. [ more ]
Former MemberThat is why I love this forum, we learn things everyday! [ more ]
Former MemberThis is exactly why I believe anecdote stories, they are important! J-pouch surgery is still considered new so we need patient experiences told [ more ]
tulsamomYeah, it helps thicken things. Also, in the olden days I would make rice crispy treat’s and eat some of that to thicken things up. I never even thought you could train the muscles in the gut to be stronger. That’s interesting. [ more ]
Kushami@tulsamom , forgive my brain fog if I’ve repeated myself. I also look back at old posts occasionally and realise I’ve gotten worse. Everything is still pending for me. I do hope you can get your situation resolved. [ more ]
Former MemberThere is a Youtube Channel that is called "South Asian IBD Alliance" I think it would be beneficial for those that are in India or are Indian This the video that I know of about J-pouches that are on their channel: A treatment option for Ulcerative Colitis [ more ]
ET_RNPokala Ravi Kiran, MD, FACS, FASCRS Colon and Rectal Surgery (Board Certified, Primary Specialty) Surgery (Board Certified) NewYork-Presbyterian Hospital/Columbia Medical Center 161 Fort Washington Avenue New York, NY 10032 Office Phone: (212) 342-1155 https://www.nyp.org/physician/rkiran [ more ]
ViduAnyone out there who has got their j pouch done in india? Please let me know of very good dependable surgeons, I would like to know from people who have first hand experience. Kindly help. [ more ]
Former MemberI had robotic surgery as well. Robotic surgery tends to make less mistakes than Human doing the J-pouch surgery lol [ more ]
Kushami@S_Watt, the BMs and pressure sound normal for the early days of a new j-pouch. If you search the forum, you will find lots of info on Imodium. I think everyone tends to be different and it can take a little while to find what works. Another popular option is psyllium husk. I personally find only the fine powder helps, but again if you search the forum you will find the various ways people find it helpful (or not). In some countries, you can seek help from a pouch nurse from another hospital... [ more ]
Former MemberIs everything more better now? Are you using wipes and Calmoseptine? [ more ]
Former MemberNot sure if this might help but The Vegetarian/Vegan diet is high in Probiotics and prebiotics, for an example Oatmeal is a prebiotic and yogurt is a probiotic so if you mix those together you got a perfect witch's potion [ more ]
Scott FFlorastor (another yeast probiotic) is sometimes used to prevent C. diff infections. I use Visbiome, which is just lots of (usually) helpful bacteria. [ more ]
SteveGPerenterol is a medicine of that kind. But I have never used it since I got a pouch. Has anyone experiences using such drugs containing saccharomyces boulardii (a special yeast) for treating (chronic) inflammation of the pouch and small intestine? [ more ]
skn69Yes. I read about it. I have been naturally doing it for years. But not throwing myself into an ice bath. There are rules to follow whether you are cardiac or not. Firstly, start out very slowly. Turn the water temperature in your shower down, slowly until it gets cold. Or start with your feet. (great for swollen ankles and calves)...run the cold water up and down your legs and feet for 1 minute. See if you can go any higher. As time goes by you will be able to progress. I find the hardest... [ more ]
AimcThanks for your response, I have read most of this info. More interested if anyone has tried this and what it did for them. [ more ]
Former MemberThat is not the first time i have heard this about NSAIDS, its a shame it does that to j-pouchers. I take Naproxen for pain and period cramps- its the only thing that works for me unfortunately. I have not had issues since taking it with a meal. But maybe my luck might run out someday lol. [ more ]
rosevioletAny kind of NSAID including aspirin and whether through I.V. or oral administration is out of the question for me. Was given oral NSAIDS first and got ulcers. Since I couldn't take oral NSAIDS, later on was given an I.V. NSAID, Toradol. After five days of this, had bleeding ulcers again, this time requiring 4 pints of blood. It's now all over my chart highlighted in yellow never to administer any kind of NSAID again. These drugs can also induce pouchitis, so be careful.--Rose [ more ]
ytcrockpotAbsolutely do take, always have. Gotta have something to help this joint pain. [ more ]
Former MemberYeah that is the worst, when people people stick up for the wrong person. Its very common of employees to defend their co-workers and people in the area to defend the wrong people. You are doing great by going out of the area. [ more ]
chili123That makes total sense bc I do think I've tolerated my issues for a super long time.....but they have seemed to come and go so I ruled out anything needing a doctor. I'm sure I'll hear from the doctor next week with next steps. Just didn't understand what the results meant....like common or uncommon so THANK YOU for putting my mind at ease. [ more ]
Scott FWith urgency and accidents this is very likely pouchitis. The bronchitis treatment might or might not put a dent in pouchitis, depending on the antibiotic. Make sure to mention the current medications when you discuss next steps with your doctor. Pouchitis is pretty common, but the narrowing might mean that it’s been untreated for an extended period. [ more ]
Former MemberEnteritis means the small intestines are inflamed. Have you ever been diagnosed with Crohns??? If not then it definitely sounds like pouchitis. Could be either or: pouchitis or Crohns I would write down the questions you have and discuss it with the doctor. [ more ]
Former MemberDAMN!!! You have not gotten scoped in 20 years?!!?! I totally get it, our surgeries and whole disease story is traumatizing. I am happy you are ready now Good luck hon!!! When are you going in??? Hopefully soon??? [ more ]
Sara MarieMaybe. I'm going to see what the colorectal surgeon recommends when she does my scope AND checks on my butthole. Big step for me. Haven't been scoped since my last colonoscopy in 2004. I was too scared to let anyone near my butt, but now I feel a little less traumatized and so I'm going to go for it. Wish me luck! [ more ]
Len78I don’t have a rectal cuff anymore since transanal mucosectomy done 4/17 via minimally invasive surgery so I don’t have the issue of humorous anymore the pouch is handsewn to the anus now due to fap and a risk of high grade dysplasia /cancer which thankfully came back benign len [ more ]
MysticobraI haven't had a gastro Dr in a decade. Mine retired while I started my journey. So I never went to another until recently. Only because I need someone to call refering to complete Blockages. Anyway. I'd get a different gastro Dr. Although what bugged me from the get go on this guy is that he didn't meet me. He had an assistant take down information. So time will tell on him. If I don't like a Dr. And it does not happen often. I will find another. The one I did have understood me completely... [ more ]
JgrantUgh… I’m sorry to hear that. I’ve been in similar situations for 40+ yrs. For me, it revolves around pain control. I can’t take NSAIDS because they make me bleed. I have had my entire cervical, at top 3 thoracic vertebrae fused because I have spinal stenosis top to bottom. I have extreme pain on a regular basis. I finally found a doctor who would prescribe opioids but only after I took Motrin for 2 days and sent him a picture of a blood filled toilet bowl - after that, I went for an... [ more ]
aragornOur DR is calling it "cuffitis," and treats with mesalamine suppositories. Even tho not completely cured, far better than the constant pain and hospitals before the j-pouch. Also have to keep strict eating patterns to avoid obstructions further up from scar tissue. No big meals, no insoluble fiber, much much water, very little if any meat and dairy, etc. [ more ]
chili123Ty!! I do think inflammation is a huge issue for me too. [ more ]
CTBarristerVery common to have inflammation in that area and I had it dilated 3 times late 2021 early 2022. It's not a big deal. Probably due to backsplash stool and not "Crohn's Disease" as there is no backsplash valve on the pouch like there is in the colon. Which is why inflammation in this area is very common, especially with older pouches. [ more ]
rosevioletPedroMadruga, am going to get some of this stuff. Am all for "guy improvement." (This was a great typo. Thanks for the good laugh!!) [ more ]
Sara MarieAny more reports from those experimenting with l-glutamine? [ more ]
BarbieGPedroMadruga, Thanks for your advice. I’ll talk to my pharmacist before taking it and my GI. It sounds promising! [ more ]
ktaWhen I was at my wit’s end with my new pouch, an excellent ostomy nurse told me to ‘put my patience hat on.’ For some reason, that calmed me and I was able to deal with the ups and downs of those early times. Also, until I got my bidet, hopping into the shower after every bowel movement was a hassle but a lifesaver. Use a mild soap like Cetaphil. [ more ]
Sara MarieYes, bidet was one of the major things I forgot to mention! So much better when you can wash your butt and pat dry. I got one from Amazon that is cold water only, but I live in TX, so half the year the cold water isn't cold. I like it because it is hand-held and you can aim it and wash from the front, like the way you wipe. Spraying back to front seems a bit unhygienic to me, as a person with a vagina. [ more ]
OldladyThank you i was hoping to find a colon rectal surgeon closer to kansas. I should know the experts are further away. According to my last pouchoscomy my pouch is collapsed. I wish my other drs. had told me with all the trouble i was having is dr. left about 15" of bad colon or pulled my small intestine down to my rectal cuff. Just explains why i have had a nightmare of a situation. [ more ]
BillVI recommend Dr. Sharief Shawki at the Mayo Clinic in Rochester. He is one of the top continent pouch surgeons and received his training at the Cleveland Clinic. [ more ]
tetauihu_robHi Dharma, I think blood thinners and IBD can be quite a challenging combination and you really need a doc that knows their stuff. I’ve had a few challenges over the years both with medication and doctors that didn’t quite appreciate the nuances of IBD. I have also learned that what works now won’t necessarily always work for me, therefore ongoing monitoring and reviewing strategy is key. As an example, I am currently on enoxaparin daily injections to treat another clot in my leg. I seem to... [ more ]
BK 123Hi Dharma, In the midst of a nasty flare which ended in getting a jpouch, I had a DVT form in my right leg. The doctors think this was due to all the inflammation, lack of movement and a slight genetic predisposition. For a few months before and immediately after my first surgery (to remove the colon), I was on Enoxaparin self injections. About a month after surgery I was able to switch to 10mg/day Xarelto tablet as a maintenance dose. I never experienced bleeding from my rectum that could... [ more ]
DharmaI'm currently on Eliquis which doesn't need to be monitored like some of the other blood thinners to make sure the dosing is correct. Maybe I'd have better luck with a different blood thinner though? That seems to be at least worth exploring. [ more ]
Former MemberUnravel meaning they took the J-pouch apart and put it back in, but I guess that would not make sense because since it has been altered it would be better to take it out, yeah that makes sense now that I think about it. Oh okay, I thought you had to take a enema or a suppository to clean out the anal canal, but it seems what you have been doing has been working just fine! Especially since you have not had it appear on your underwear or anything, that is excellent! And yeah getting another... [ more ]
MysticobraKenneth. I do hope you get some answers and relief. This is a terrible disease and the things we go through to get at least a decent life is a long road. Richard. [ more ]
Former MemberOh shit!!!! I am sorry to hear that!!! You went through a surgery and had covid?!?!!?!! Damn! your a trooper!!!! lol. I am so happy you are doing better and eating food again [ more ]
OmystLauren Yes I will wait now and see how it goes. I am feeling much better now. Found out I have Covid and as I was recovering from the surgery Covid came on hard with no clear line between them. The nausea and non-well feeling was rough . My pouch is starting and I'm eating real food again. Got the virus on the planes flying back from the surgery at Cleveland Clinic, I should have timed the antibody peak of a Covid booster to coincide with my surgery [ more ]
JaypeaAll patients will have a pad placed under them for any procedure done under general anaesthetic. You could also mention this to the nurse who checks you in. Leakage of all types happens every day in the OR. We are quite used to it. If it is under a general you will be NPO from midnight. [ more ]
Len78Thank you scott the urologist knows because I was referred to him for retention concerns and and opinion by my surgical oncologist who did the Tami's mucosectomy on me but I’ll inform him I wear a pad everyday m tell the nurses too so they can extra prepare me i think I’ll have a rigid cystoscopy so this scope is diagnostic as that’s what’s written in portal notes so will be atleast 20 30 minutes thanks for writing me/ responding Len [ more ]
Scott FOh, heck, Len, of course an enema is a bad idea in your current situation. In any case, I don't think a UTI is a big risk in this situation - the urethra will be rather fully occupied, and any leakage will tend to follow gravity away from the urinary tract. Do let the urologist know about your concern, so if any precautions seem necessary they can be taken. Good luck! [ more ]
Former MemberAnal sex is a no go for us. That can permanently damage the pouch and cause permanent incontinence. Please do not risk that, you have been through enough already. [ more ]
Sara MarieScar tissue may affect how the massage feels as well. [ more ]
Deb CI got my j-pouch in 1993. I have always had problems emptying. After many months of waiting for improvement my surgeon did a digital dilation, then another one and finally a 3rd one under sedation. This helped a little. Finally the surgeon oredered a defocogram that still left her with no clue what the problem was. They had me using a tap water enema and a medina catheter to empty. It worked but was horribly inconvenient. Finally the ostomey nurse suggested rectocele could be the problem. [ more ]
Saffron64Hi readann, I realise this is an old post, but wanted to contact you as I also have had ileorectal anastomosis and no pouch. Colectomy in 1990 and as you say there's not many resources for people like us. I still have a lot of problems frequency and pain especially at night 🥴 and have recently been referred back to the GI team. I'm in the UK. I'm trying Cholestyramine at the moment. I also have a pelvic floor prolapse with rectocele which causes incomplete emptying, bloating and pain. Did... [ more ]
readann@Safado thank you. A poop schedule like that would be a dream. I go out 9 times in the morning over three hours and it’s difficult to pass it all. It takes so long. [ more ]
Kushami@Stoma BB , you can find stories of people having poor outcomes from any medical intervention. You can also find stories of good outcomes, and okay outcomes. The way to make an informed decision is to look at the sudies showing outcomes from hundreds or thousands of patients, preferably over a long time span. We do have some of these studies now. And then look at the stats in comparison to your own medical situation, if possible. Then consider your lifestyle, personal preferences and access... [ more ]
Former MemberStoma BB How did your appointment go??? [ more ]
Former MemberYes I was told that we are not ever allowed to lift more than 20 or 25 pounds. However there are a lot of people on here that do know this and do it anyway and there are people on here that need hardcore evidence to make changes. I think it is hard to find hard-core evidence about jpouches because j pouch surgery is not that old, its under 50 years old. That is why I rely on anecdotal stories because I want to have my j pouch be happy and live a good life with it since we start running out... [ more ]
OmystThank you ElizaB It was Dr. Holubar at Cleveland Clinic did the surgery. He was also instrumental in identifying the issue as well. Dr Benjamin Click ( University of Colorado health ) did the scope which Dr. Holubar said was very helpful. And I believe I had a loop illeostomy. Good luck and I hope you get resolution to your issues. [ more ]
ElizaBHi...I'm sorry to hear about your issues and hope that you start feeling better soon. I also have a 30+ year pouch and have had a ton of problems recently. Do you mind telling me who you worked with to identify your issues and who did your ileostomy? I'm also wondering if the ileostomy they gave you was an "end" or a "loop" since it seemed to work well for you. Good luck ...and I hope you're soon on your way to a strong and complete recovery. [ more ]
Former MemberOkay, I am glad you have a good support system! MAke sure to drink lemonade to keep your sugar normal. And yeah I understand what you mean about the ileostomy. It might be better to explore all of your options with the J-pouch or possibly other procedures so you do not have regrets down the road. [ more ]
Former MemberRemicade is under the same drug classifier as Humira??? Okay perfect! I look forward to the update! Never heard of Skyrizi, sounds cool. I heard Xeljanz is pretty good. [ more ]
RB15Yes i will update here after the scope! I tried Humira first and it didn’t work, and i believe Remicade is also a TNF alpha drug, so they said it’s pointless to try. The next obvious one to try if Stelara has stopped working is Skyrizi. But i will see what they say after the scope, it’s possibly still adhesions, so it’s kind of up in the air still. Thanks again [ more ]
Former MemberYeah unfortunately I hear that story all the time about people getting their J-pouch surgery and then Crohns comes later. Its unfortunate but very common. I had a Prometheus blood test done before any major surgery- that test tells you if you have Crohns, Ulcerative Colitis, or Unknown- mine came back Ulcerative Colitis. I am not sure how accurate that test is though. I hope the Crohns will not affect your pouch. So it looks like maybe the Stelara is not working. What do you think about... [ more ]
emmeHello 'Hamm' I wish to advise that state-of-the-art IBD treatment & related supports and resources, including a team of excellent surgeons, can be accessed at the Zane Cohen Centre for Digestive Diseases at Mount Sinai Hospital, 600 University Avenue, in Toronto, Ontario. Here is the Zane Cohen Centre for Digestive Diseases website link: https://www.zanecohencentre.com/ With best wishes for your health. Emme [ more ]
OmystYes I think it is residual swelling and I will not push and will stay hydrated. Thanks for the response [ more ]
Scott FCan you tell if your pouch is actually full when you try to go to the bathroom? You could have some swelling around the takedown area, leading to a partial blockage. The bloating can make it feel like the pouch needs to be emptied, but there’s not much there. It will be best if you can avoid straining to try to poop. Hopefully this will clear itself up soon. In the meantime it’s critical that you stay hydrated. [ more ]
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.
Forum moderator and advisor Jan Dollar R.N.
General Disclaimer
This ileoanal web site is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through this ileoanal web site should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your health care provider.
Materials presented on these pages are copyrighted by William Johnson and Linda B Hurd. Except as superseded in individual documents found here, these materials may not be sold or redistributed for profit in any way without express (not email) written permission of the authors. This includes, but is not limited to, translations into foreign languages, mass archival as on a CD-ROM and inclusion in commercially published compilations (books).
Confidentiality
Confidentiality of data relating to individual patients and visitors to the J-Pouch Group Web site, including their identity, is respected by this Web site. The J-Pouch Group Web site owners undertake to honor or exceed the legal requirements of medical/health information privacy that apply in the country and state where the Web site and mirror sites are located.
CCFA
The Crohn's & Colitis Foundation of America, Philadelphia, Delaware Valley chapter, is located at 521 Bustleton Pike, Feasterville, PA, 19053. Tel: 215-396-9100
National CCFA headquarters are at, 396 Park Avenue South, 17th floor New York, New York 10016-8804 Tel: 212-685-3440 800-343-3637
When you block a person, they can no longer invite you to a private message or post to your profile wall. Replies and comments they make will be collapsed/hidden by default. Finally, you'll never receive email notifications about content they create or likes they designate for your content.
Note: if you proceed, you will no longer be following .
