Former MemberVegetarian for 5 years, were here [ more ]
skn69Not to get onto the 'is it good for me or not' question...here are some tricks that they use here to control the gas that is directly linked to beans and peas etc. My adopted mother and in-laws taught me to soak my dried chick peas and beans in a large volumn of water (about 5xs the quantity of beans) and add a couple of tablespoonfuls of baking soda to it...Stirr and let sit over night...the next day rince very well before cooking. That is usually the best way to avoid the gas related to... [ more ]
Former MemberI can honestly say being a vegetarian for over 5 years with my pouchy has helped for the better! Vegetarian diets are loaded with prebiotics and probiotics so that is God Given to us [ more ]
SpookyI am not vegan but I have followed a mainly vegetarian diet for several years, particularly when I discovered - after much trial and error - that red meat, in particular beef, was one of the hardest foods for my system to digest. I still eat fish occasionally, but it seems that eliminating red meat and gradually phasing out chicken and poultry has helped my pouch function. As others have mentioned, hummus, lentils and tofu are very popular options. I find Beano helps with digestion. More... [ more ]
Former MemberI hope things are better now. But yeah wearing a diaper and setting an alarm might be the best thing for you at this point. I go at least 3x overnight without an alarm clock, but some people need alarm clocks, absolutely nothing wrong with that, I used them a lot in the past for ileostomy care, Alarm clocks saved a lot of leaks and washing the sheets lol [ more ]
LjzI know it’s been awhile since this was posted but just saw this. I had to always set an alarm to get up to avoid nighttime Incontinence but a pelvic floor doctor recommended and it has worked great for me- she emptied out a bottle of enema prep and suggested I fill with warm water and do warm water enema before bed. Really helps to fully empty pouch. I use Vaseline to lubricate it. I also use Ilex paste, a large pea size drop placed at outlet. Seems to help prevent leakage. Agree with Scott... [ more ]
AimcI'm usually up once a night to pee. I think that comes with age. Lol Aimee [ more ]
Former MemberI have been vegetarian for 5 years, no problems except when I overeat to often lol [ more ]
Former Member❤️
CTBarristerI found that raw carrots was my biggest culprit in causing partial and full blockages. Use the 28 chew rule- 28 chews before any swallow. Cows which are mostly vegan spend 8 hours per day chewing their food- an average of 40,000 jaw movements per day. If cows can do this, 28 chews is not asking a lot! [ more ]
Former MemberVegetarian for over 5 years with my pouchy [ more ]
temotylike others said, I've tried several times to go vegan, but I seem to get a little dizzy without enough calories. I end up eating meat again because it seems to stabilize me. Saying that, I still eat mostly vegan with 1-2 green smoothies per day, which I've been drinking for years. I've done some health coaching and one thing to consider is chewing enough. When eating, break down your fruits, nuts, veggies plenty by chewing 20-30 times per bite. You get more nutrients while digestion begins... [ more ]
SolomonSealI know this is a very old post but sometimes I go back to make sure the narrative is completed. What ended up being the case was that the hole in the "fascial" layer for my stoma was not wide enough, so I basically left my jpouch removal surgery with a partial obstruction. An MRI showed how narrow it was and this probably all explained my tough post-op. It was not normal, in fact the tissue was inflamed from being so tight. I went back for re-operation about 2-3 months after the jpouch... [ more ]
SolomonSealStill doing low residue. I'll hear from my surgeon soon. [ more ]
MysticobraI have mentioned this in other posts but now that my colon and my pouch are gone I feel completely relaxed in the whole area. No stress goes there. It's where it accumulated for me. I have never felt this way in my life. I would suppose it's the way normal is. I don't know. Richard. [ more ]
Former MemberI love your sense of humor! Definitely sounds like pouchitis, I would talk to your doctor about possibly taking Remicade, Remicade has good results with J-pouchers usually. [ more ]
Former Member❤️
Scott FDavid, this sounds a lot like untreated pouchitis. I don’t know what “this or that” your doctor has tried, but if you haven’t tried a course of Cipro or Flagyl then you may be struggling needlessly. Psyllium (Metamucil) can certainly bulk up your stool, and I’ve used it daily for 18 years. Not everyone likes the result, but many folks report some benefit. Opium Tincture is a pretty effective last resort. It’s not illegal in the US, but it’s very difficult to find a doctor willing to... [ more ]
Former MemberThat is really ironic! What made you not wear it in the ATV? Any particular reason??? [ more ]
rripThis is what troubles me so much... I have never for the 40 years I've had a driver's license driven without a seat belt, & never ever even ride as a passenger without a seat belt. Even as a kid I used the seat belt without being told. The one time I go without it was in an ATV? I can't understand my thought process on that one. I really am lucky. [ more ]
Former Member100% agreed! I am glad how far we have come [ more ]
DisneynutI think about it all the time. I try to think about what it would be like still suffering with UC and be positive, but I often think it's unfair that I had to have it in the first place :-(. [ more ]
rosevioletOne would hope that medical researchers would know the difference between Inflammatory Bowel Disease and Irritable Bowel Disease/Syndrome. [ more ]
Former MemberAMEN Bubba! I go 13-20X a day so I got your back!!! 9 Percenter Fam [ more ]
Former MemberThat is soo thoughtful of you to let me know and to care about the sewage I actually leave a trashcan with a grocery bag inside it by the toilet and I put my wipes in there after I finish wiping; I have been doing that for 6 years [ more ]
Former MemberOatmeal helps but if the diarrhea is tolerable and if there is nothing wrong bacteria wise, I would just work with it. I go 13-20X a day and I just go with it lol. [ more ]
Scott FThat's what I suspected. It's not an allergy, but it might as well be. I'd leave Levaquin off the list of promising options. Nevertheless, there are plenty of other possibilities. If antibiotics fail then biologics often do the trick. [ more ]
ytcrockpotThanks for the info. Unfortunately I have an allergic reaction to cipro, pain in my ankles/tendons every time I take it [ more ]
Former MemberI have been a vegetarian for 5 years with my pouchy and I definitely feel a difference with it! Makes everything feel positive! It has lots of probiotics and prebiotics in it so that is a bonus [ more ]
WinterberryYTCrockpot, wondering if, after a month of vegetarian / vegan diet, then the sudden four days of chicken was too fast, too much, for your system to re-adjust at once? Maybe try something easier to digest, such as fish in small amounts, slowly, every few days? Try fresh fish from the supermarket, not the breaded frozen kind, which can be yummy, but far too processed, mostly breading, and not really fish anymore, especially for your system right now. You could try making a smoothie using your ... [ more ]
Former MemberVery thoughtful of you to post that! Thanks! Its on the Crohn's and Colitis Foundation website too. I am glad to see it twice! Makes me feel safe twice! [ more ]
Former MemberI am at year 6, I hope I get lucky like you guys [ more ]
MichaelHit 30 years this October. I've stayed away from immodium, lomotil, etc. and generally try to ride out any episodes that result in increased frequency. My philosphy has always been to eat & drink literally everything. Jalapenos on the chicken and rice street food? Check. Drinking tap water when I lived in Bangkok? Check. A couple of pints to go with those bar nuts? Double check. That said, I've had a major pouch rework due excise some narrowing and several bouts of pouchitis. Still, the... [ more ]
Former MemberI drink about 2-3 gallons with salt added. [ more ]
Raj10-12 glasses a day . But that depends on your lifestyle and environment . I just see to it that pee looks light yellow , never dark and doesn't burn in any way when peeing. Those are some signs that your fluid intake may not be sufficient. [ more ]
PouchLogicWater is definitely important, I drink easily 7 to 10 glasses a day, not including other liquid. If you are having trouble getting enough water in try having some salt lol, both are important. [ more ]
Former MemberI am sorry you are going through this! I agree with CT BARRISTER. Biologics like Remicade should be able to help! I heard good results about that from him [ more ]
CTBarristerRemicade cleared up the pouchitis I had throughout my pouch. I think you may be headed for biologics, which could bring that situation under control. [ more ]
Scott FNon-prescription things to try include *very* low carbohydrate diet and a high dose probiotic, like Visbiome (sort of non-prescription). VSL #3 kept me off antibiotics for about a year. These both take a while to show results. Other than that you’re probably looking at prescription choices: perhaps rifaximin, or one of the biologics. Good luck! [ more ]
Former MemberI would suggest reaching out to your gastro. A gastro should be able to help [ more ]
AndreitaYes I tried them but once the gas is there it won't vanish when I take gas-x. It only helps get the bubbles together. So you can pass it. But I can't pass sitting on the toilet. Only when laying on my belly. [ more ]
ytcrockpotHi, Have you tried using gas pills? That seems to ease gas pains for me. I use Phazyme maximum strength 250 mg. 2-3 tablets. Any other brand you have to take multiple to get same relief. Hopefully that will help. [ more ]
Former MemberAppreciate all of the positive comments. Biden won so lets hope he helps everybody and those of us with medical issues. I hope everyone: all of the future J-pouchers/pouchies and future ostomates will be taken care of in the now and present going forward [ more ]
Michaelwhile I do, my 34 year old pouch doesn't care much about politics. suggest we keep them separate. [ more ]
PouchomarxI don't have Obamacare as I have health insurance thru my job. But it is ridiculous, premiums are sky high and deductibles are outrageous. With all of our health issues I have to pay between $3000-$7000 out of pocket for myself and my 2 kids. That doesn't even include the $600 a month in premiums.. I work to pay my medical bills with not much left over.. [ more ]
Former MemberOh I totally understand that! I just like to say that a lot lol. I had the same thing happened to me too so I did a lot of woundcare. I would definitely suggest you see a woundcare specialist, that is their specialty . Sorry I did not mention woundcare specialist yesterday lol. There should be woundcare clinics around you hopefully. I would search google [ more ]
LoveLifeThank you for comment, Lauren. My wounds did not heal good, I would like to see, if I can make them better. That has nothing to do with how I view what has happened or the battle I have gone through. [ more ]
Former MemberI do not do anything about my scars personally. My scars are apart of my journey and my proof on how I do not let anything beat me. My scars are my battle scars I think you should be proud of them [ more ]
BillCoAfter K-Pouch surgery last January the hospital gave me Simethicone, which seemed to help with excessive gas. It might be worth a try! [ more ]
jan15Do a site search for Devrom. Lots of information about others experiences. And best prices. Don’t get discouraged if it doesn’t work right away as it took me about two weeks for full effect. There’s some foods that it just won’t cut, but that might differ for a person. Good luck and I understand the smell problem embarrassment. It’s universal. [ more ]
Kim SI carry a purse size spray bottle of a product called “Mask” that I ordered from Amazon. It’s not over powering or extremely fragrant, but unless I’ve eaten something over the top, it does a very good job without being too much. It comes in a large bottle and I had an old empty Poo Pouri purse size, so I just keep filling it up. I’m not a fan of most of the poo pouri fragrances. [ more ]
Former MemberDefinitely avoiding stress can help with that! Make a list in your head or write down the things that make you happy and/or grateful for, that helps me feel better a lot. Try it out Exercising helps reduce stress too [ more ]
Former MemberSorry you are suffering! For preventing blockages in the future, drink water: before, during, after meals. And moving around a lot helps. These are tips I like to follow for preventing blockages. [ more ]
SolominHi Scott, Thanks for the info - Cipro does cause tendon issues, and Flagyl does not. I can no longer tolerate this drug either. I would not be surprised if I have SIBO, but it is challenging getting in touch with my doctor especially during the pandemic. Her secretary does not like me in any way (and I even gave her a cash present following my surgery) and probably does not pass on messages. She claims that she does not communicate with her boss for weeks at a time, which sound ridiculous. [ more ]
Scott FHi, Solomin. Has your doctor considered SIBO (small intestinal bacterial overgrowth)? That would explain the excessive gas. SIBO is normally treated by a longish course of an antibiotic, usually rifaximin or doxycycline. Doxycycline took care of it very well for me. Your problem doesn’t sound much like pouchitis to me. A chronic partial blockage might also cause the sort of discomfort you’re describing, but not usually excessive gas. Cipro can cause the tendon problems that concern people,... [ more ]
Former MemberI think you should! There is lots of benefits! It is high in prebiotics and probiotics so that reduces pouchitis risk I have been one for 5 years and never had it. And animals are saved and it helps save the environment Lots of benefits to it for you and the world and lives [ more ]
JaydogNo I'm not but I've thought about trying it [ more ]
Former Member*Fart at your own risk* LMAO!!!!!! So true!!! I agree 100% with everything you said lol. [ more ]
King KrapperYea I’d like to say fart at your own risk lol, I have found for me at least that I can lay on my side or my stomach and can pass gas with the best of them with not having to worry about Sharting myself lol. Now I don’t trust a standing fart though lol, it’s usually a cross your fingers that it’s dry type of event lol [ more ]
afbucherFarts of any kind are risky for us at best 😂😂 never trust a fart 🤪 [ more ]
Former MemberExactly!!! Stay safe! I am sorry to hear that! I hope things get better! I have only experienced blockages with my ostomy not J-pouch so far. I got blockages with my ostomy because my abdomen is very muscular and tight so it caused many blockages unfortunately, that is not a too common reason though. I hope you never get a blockage again and I hope you do better [ more ]
Scott F@Tavofl61 The Colace could potentially be loosening things up too much, and if you’re taking the wrong one (Colace 2-in-1), or any stool softener that includes a stimulant laxative that could cause all kinds of trouble. I’d suggest you double check, since the packages look very similar. Are you on the Colace to try to prevent future blockages, or for some other reason? Very few J-pouchers need stool softener, and it could be increasing the number of bowel movements. It would be especially... [ more ]
Tavofl61Thanks, that’s the idea, stay close to other people and to a safe place to “evacuate “. I also have experience 4 blockages in my gut, matter in fact, I am in the hospital right now since Saturday, I have besides the blockage something they said is anastomosis in the lower right quadrant with interval resolution of “extraluminal gas and adjacent Ill defined fluid , they tell me I may have to have another surgery to redo the conexión of the intestin to the the J Pouch, if some one experienced... [ more ]
Ryan138Scott thanks for the tip...I’ll pick me up a shaker this week and give it a go [ more ]
Ryan138MR D.... you take 3 tsp in the morning and you have close to normal BM all day and take no more until next morning? [ more ]
Mr. DI’ve been taking 3 heaping tea spoons of Metamucil everyday for 18 years, first thing in the morning mixed in large glass of water. I buy only the large 55 oz containers, orange flavor. For whatever reason the smaller containers I find have different granules that are harder to digest. I wait at least 2 hours, minimum before eating. This has been a difference maker for me. Makes your bowel movements as close to normal as possible. [ more ]
Former MemberYou are soo lucky!!! They should have that in all 50 states and in the Universe!!! Hopefully some day !! [ more ]
sombrenoteUniveristy of Michigan has a card they hand out for special access. It says on it "Providing immediate access to a toilet for this person is required of all businesses in Michigan by state law, per HB 5046, December 31, 2008" https://www.legislature.mi.gov/ (S(clre21q2ujqlpklajcc51ylm))/mileg.aspx?page=getObject&objectname=2007-HB-5046 [ more ]
Former MemberI definitely know how they feel, it feels like HELL with an ileostomy. And thank-you for bringing this up! Overeating can cause: hernias, bockages, and other problems for sure. I only overeat maybe once a week just to have some fun lol. But I should be careful on that once a week too. I definitely do not need any problems. [ more ]
Former MemberIt must be nice not being in the 9%, you must get more sleep [ more ]
afbucherBe careful I have been in the hospital more times than I can count for intestinal obstructions...! It is comparable if not more painful that giving birth...! [ more ]
Former MemberHEY! And wow that is awesome! I wish more J-pouchers/ostomates can get stuff like that too! You would think the doctors would give every J-poucher and Ostomate that. I wish we all had restroom access in every state too. [ more ]
tfHi, I was given a handicap placard by my family dr. She was able to because I could not walk the distance and the urgency to need a bathroom. I was so glad for that. The anxiety when on the road or getting to the store and needing to get to the restroom asap. Takedown 2013, dx severe UC. I have J-pouch since 2013 [ more ]
Former MemberSo happy to hear that I think you are doing the right thing. Remember to take it easy, especially when you exercise- do gentle stuff. Your welcome [ more ]
skn69The pain has lessened, thankfully and is only present when I sit in certain positions. I am making an appointment to see a surgeon just in case but if the pain completly6 disappears then I won't touch it. The last thing that I need is unnecessary surgery. Thanks for asking. [ more ]
DeniseLiseHas anyone stayed on Stellera for more than a year? These posts are old now, so I'm not sure if any of you will be following. I have the same issue. After 20 years of pouchitis off and on I have now been diagnosed with Crohn's. Have a stricture 30 cm up from the pouch, inflammation and ulcers all over, but the diagnosis came from biopsy also. My symptoms are only frequency, no pain, I feel really good, so I was surprised at the scope results. Im to start Stellera on Friday, basically to... [ more ]
ks1905I'm sorry that I did not see this sooner. I started Stelara 2 years ago (25 months) and at first it only worked for a few weeks at a time and then I'd have to go back to antibiotics (2.5 years of rotating antibiotics). My insurance company would only approve the psoriasis dosage(45 mgs every 90 days) for Stelara because it wasn't FDA approved at the time for CDs. I have ulcers in my pouch, call it what ever you want. So thanks to Prednisone I needed a hip replacement and I had to discontinue... [ more ]
SarahXYZWell, Stelara won't change the fact that you don't have a colon fo digest the leafy greens! I do ok with romaine and if it's part of a meal with bulking foods like rice. [ more ]
David WI echo SJAN810's comment above. I think you're about to see a huge quality of life improvement. Be patient as your body heals. As you adjust to your ostomy, keep focused on how well you feel, and on how much you've improved. I admire your strength, and I wish you all the best. Keep us posted. [ more ]
SJAN810Duck11, Wow, I am so glad you finally found some answers! I am so sorry for everything you have been through, but like you said, you knew something was very wrong and this is confirmation of that! Now you can focus on recovering and healing and regaining some quality of life back! Praying that your recovery goes smoothly and you feel better very soon. [ more ]
Jules-mulesI have researched and find that Co -phenotrope (Lomotil) is now available in the U.K. again. I will see if my GP will prescribe it for me. [ more ]
RondaCJ Jules-mules I used to take Lomotil but it is no longer available in the U.K. Why not [ more ]
Jules-mulesI used to take Lomotil but it is no longer available in the U.K. [ more ]
Former MemberA lot of good responses! I agree that we will always have UC and IBD. What we have is not a cure for Autoimmune Disease and IBD. Our J-pouch/ileostomy are our treatment plan. Our condition is called what our disease is called, in my case UC. I like to use the word special or difference over disability/disorder. [ more ]
ytcrockpotI thought I was the only one that asked this question. My psychiatrist asked me yesterday to find out from my gastro doc what the medical term for my disability is. Apparently it's a hard question to answer. no one understands, 35yrs post total colectomy, chronic diarrhea, pouchitis, no meds working and everything else that's associated with it. [ more ]
Rebe0505kobe i think you might say i have chronic intestinal issues..thats what i say when it has me down and out or someone wants to know why i am such a food police eating.. and if someone goes any further i just say i am missing my large intestines..that usually stops all questions! i did not have my colitus or my pouch during my working years so i guess if it effects your ability to perform your job it does become an issue you have to deal with. but i still would not consider it a disability.. [ more ]
WinterberryHi, SallyStew. Try not to worry or be scared while you are waiting for your prescription and for your referral to a gastroenterologist. If you haven't had significant health issues (other than the bout of pouchitis) in so many years then you are likely one of those J pouchers who get by and have been lucky. There are many members who haven't had a pouchoscopy in longer than you. It is different for everyone. Hopefully they will chime in so you will hear both sides. However, now that you are... [ more ]
Former MemberSallyStew: There are some people on here that disagree with everything I say and a lot of people on here are stuck in their ways no matter what you say to them, those people I like to leave alone as you can see. I like to talk to people that are willing to learn and that are open. People that have problems need to get a pouchoscopy every year, no matter what. Every J-poucher that is not having problems, needs to get a pouchoscopy every 1-3 years, that is a fact. I have confirmed that with... [ more ]
Scott FSally, it sounds like your HMO (or your primary) may be screwing up a fundamental responsibility. If your primary is not familiar with your condition (as your original post says) then referral (or perhaps educating himself/herself promptly) is the only reasonable path. The approach of getting your prescription advice on a support forum from anonymous people, and then feeding it to an ignorant primary, who hopefully agrees to write it, is indefensible. Good luck! [ more ]
Former MemberYou too! Definitely ask the doctor about Remicade and see what he says. It could definitely be a great option if things do not clear up. [ more ]
Paul SchwartzGlad you have ways to keep it under control. Thank you for responding, I hope you stay well! [ more ]
Tom JI have chronic pouches. Besides getting it under control quickly with meds. ( Flagyl, and cipro) i found diet is huge, the remaining colon flairs up and seems like diet to maintain is best for me. [ more ]
Former MemberThanks for the suggestions. Will try zucchini, might be the ticket to help move things along. It’s something I’ve eaten plenty of for it’s easy digesting. And then the olive oil with it sounds hopeful. Never had constipation before taking this RA med... [ more ]
FredrikI had UC, got a j-pouch. A couple of years later I was diagnosed with spondylitis. It means inflammation in the SI-joints. Luckily there are many good treatment options, mainly biopharmaceuticals, that treat both pouchitis and these kinds of diseases at the same time. [ more ]
WinterberryThomasheubeck, if oatmeal doesn't work, have you tried eating cooked zucchini? I ate that all the time when I had issues. Peel the zucchini (you don't want to eat the skin, which is insoluble and will cause problems). Slice into coin shapes 1/2 inch thick or so, and drizzle olive oil or any kind of good oil. Salt and pepper to taste. Put on a small roasting tray and roast at 325F for 15 minutes or, depending on your oven, until they start to soften and turn slightly brown. Keep your eye on... [ more ]
Former MemberI am glad you celebrate I celebrate my pouch birthday and takedown too You were the first J-pouch patient for that doctor and he did not tell you????!!!! That doctor is crazyy! He needs to get sued lol. For the infections, ulcers, and crohns- I would suggest REMICADE to your doctor, I think that would cure everything up [ 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).
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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
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