J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsPouchitis
2000 is a high dose, but his pouchitis could be bad and warrant a higher dosing. Before I went on Remicade I needed 1000 mg Cipro and 1000 mg Flagyl to keep the pouchitis under wraps. Now it’s like 250 mg of each. I never had side effects with Flagyl although a lot of people are bothered by it. Xifaxin. tinidazole and Augmentin are other antibiotics that can be substituted or rotated. BTW this should be common sense but always take Flagyl with meals or food and never on an empty stomach. I... [ more ]
I agree with Scott above. Call your Dr. I take the same 2000mg of Flagyl and additional antibiotics when I have pouchitis and I think that’s the same dose I’ve always taken. So I think it’s normal.... but, the side effects seem to be the concern. There are multiple other options. Good Luck! [ more ]
I love VSL, but it doesn’t do much for acute pouchitis. If a prescribed medication is causing unacceptable side effects the best thing to do is call the doctor and try to make a revised plan (different dose or different drug). None of us know enough details about your husband’s circumstances to know if the prescribed dose is inappropriate for him. [ more ]
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J-Pouch ForumsHelp! Need advice now!
I’ve been through this for almost 8 yrs now and have had to go back into my bag 5x in those 8 yrs for fistula repair and I’ll do anything to stay out of a permanent ostomy! I’m reminded of how nice it is with a j-pouch everytime I go back into a bag! I’d encourage you to try and check out the other clinics or do a temporary bag to see if it actually helps your problems BEFORE actually removing the J-pouch! I know it’s always been an option with my surgeon to let me try a “temporary”... [ more ]
Rough this disease. I am sure you have been through the thought process, but have you checked with a few of the top JPouch clinics like Mayo and Cleveland- could your pouchitis possibly be structural related? Before you go for removing it, if possible, try to get evaluated by a top JPouch clinic. [ more ]
I alternate VSL #3 with Florastor. [ more ]
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J-Pouch ForumsPouchitis
❤️
Follow up! I checked with a wound care nurse friend of mine and she looked at the ingredients and said it looked very good as a barrier cream I think it’s the beeswax percentage with the lanolin that creates such a nice coating its available online although it’s fun going to the feed store too [ more ]
I may have to try this! (Can't help but find it funny with the picture of the horse, just goes to prove our butt burn can be enough to put a horse out of action! haha) [ more ]
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J-Pouch ForumsHelp! Need advice now!
I was on Entocort for around 6 months and while it was effective in reducing an area of inflammation at my J Pouch inlet, it is an immunosuppressant and I had a massive breakout of yeast infection and warts that was likely due to the combination of antibiotics with Entocort. Therefore I believe a short course is indicated. I didn’t have any side effects- it’s similar to Prednisone in action with less side effects and that is due to the mechanism of action. The main side effect to be... [ more ]
I used it for quite awhile (close to a year?) before I switched to Immiran, because whenever I tried to wean off the entocort I would flare again. At the time entocort was not considered appropriate for long term use, although I believe they have been doing studies to look at whether long term entocort is viable. I didn’t really experience any side effects from it except for my fingernails became thin and would split/peel. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hi Spooky thanks for the input. Yes I have tried bananas and they do agree with me.🍌 Thanks again Angie [ more ]
Applesauce has always been good for me, but I echo Scott - we are all individual! The same would go for any fruit or food, for that matter. Unfortunately there is no universal j-pouch diet. It would be so much easier if there were! In terms of fruit recommendations, the truth is, due to the sugar and fiber content, fruit in general can have a laxative effect for just about anyone, colon or no. Doesn't mean you can't eat fruit, it just means you'll have to try them individually to see how... [ more ]
Thanks Scott. Another food off my list. LOL. I may try to introduce it again after some time has passed. Are there any fruits that are good to eat with a jpouch? Regards Angie [ more ]
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J-Pouch ForumsGeneral Discussion
Just wanted to update that I'm now on MTX and Humira. I just couldn't control the arthritis naturally and it was just too painful. I'm still quiet limited in what I can do physically but it's much more predictable and under control. Considering trying some CBD oil would love to hear more feedback. Also wondering if there's any contraindications with MTX or Humira? [ more ]
That's great news! I was planning on trying cpd oil . Is it sublingual? Or do you vape? What probiotics are you using? [ more ]
And now I started something else. I’m using cbd oil. I started 3 months ago for bad anxiety. It’s helping my joints too. I have to cut back on supplements bc of cost so cbd oil now and 1 joint supplement. And probiotics of course [ more ]
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J-Pouch ForumsK-Pouch Korner
Flagyl effectiveness seems to diminish over time. New GI doc is adamant that flagyl is NOT appropriate for long term maintenance due to neurological complications. He is suggesting Butyrate enemas (which is very expensive and not covered by insurance) or Rifaximin. Has anybody tried either of these therapies? [ more ]
Thanks Janet, while i I am sure diet changes couldn’t hurt, Dr. Bo Shen at the Cleveland Clinic had suggested that pouchitus seemed to also show as seasonal almost as an allergy. When I last saw him (quite awhile ago now), he said there was still a lack of understanding why this was. I may try and irrigate a little more(per your idea) but don’t generally change that or my eating habits throughout the year. So there is nothing that really “triggers” it like different foods, less care etc.. i... [ more ]
Mike I'm really disappointed to hear you have pouchitis w the K pouch and so sorry for you. My J failed, due to pouchitis and other such complications, and went to the K. The stoma nurse at Cleveland Clinic suggested to irrigate very often, apparently to make certain that bacteria isn't forming--honestly I'm not sure why. At any rate I irrigate almost every evacuate and in three years no pouchitis. I also continue on my diet of no refined sugar and reduced, if any, simple carbs. That helped... [ more ]
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J-Pouch ForumsK-Pouch Korner
Wishing you both well. I might have added that I use a heaping tablespoonsof psyllium husk after 3 meals and before bed mixed with a little water. Alot of people prefer metamucil as it dissolves in water while the husks are a bit like drinking sand! (Also some have questioned the wisdom of the before bed one as it likely gets me up on the night. But, like I've said, I can be stubborn and stuck in my ways. Maybe just experiment.) [ more ]
Thx so much for your time. I’ll look into it!!! [ more ]
Although I'm not as convinced about the 'food allergy' idea, I would share your humble opinion that the higher starch/sugar intake contributes to pouchitis. I don't know if there is actually evidence to suggest this but I think I remember reading it somewhere on the University of Massachusetts's IBD diet where people who ate higher starch, sugar (including fruit) had greater pouchitis incidence. If he's eating those foods for thickening, I can offer my humble opinion again for what it's... [ more ]
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J-Pouch ForumsGeneral Discussion
Sounds unusual. And while I don't think it's where your question was heading, receptive anal sex has been done by at least one person on here but that was over a decade ago I read on that. [ more ]
It is safe for folks with J-pouches to have sex with or without a partner, though I’m not sure if anal sex is advisable. It’s not typical for it to hurt as you describe, and you may want to discuss it with your doctor, though I fear the answer may be unsatisfying. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Interesting Thanks Raj [ more ]
Your poop is acidic when the pouch is new. Slowly it returns to normal pH . What I've seen is that mine is particularly acidic or runny at night 2 hours or so before bed. So I finish up my last meal before 8.30 and hit the bed at 12. Also a thick output doesnt seem to bother me much. I'll say try avoiding anything fried or dairy when you feel its too acidic. I personally go for a high protein and fat diet like red meat, fish, chicken. They are slow digesting so help me with controlling the... [ more ]
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J-Pouch ForumsGeneral Discussion
Most of what is written about “gut health” is about colonic function, and has essentially nothing to do with folks who have J-pouches. If you’d like to reduce your frequency you ought to start by thinking through the physical cause. There’s a big difference between low pouch capacity vs. high output, for example. There’s a difference between managing liquid stool vs. soft solid vs. formed. There’s a difference between true urgency (I.e. delay will cause an accident) vs. a pressure... [ more ]
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J-Pouch ForumsHelp! Need advice now!
If you ever find yourself straining—stop. With me, I felt like if I just pushed a little harder I’d have this huge release and satisfaction. But then the BM would stop mid-stream without that release and muscle was strained. As a result, I would have a much worse pain/burning than any butt burn. Pain and recovery could take a week depending on how hard I strained, even involuntarily. Bottom line, Pelvic floor therapy is teaching me how to poop again. [ more ]
Honestly- I’ve never looked into pelvic floor dysfunction but you may be on to something. I’ll definitely look into it. Thank you! On a side note- my CT is scheduled for today, so hopefully they’ll be some answers. [ more ]
Are you absolutely sure it’s not pelvic floor dysfunction? You can have unbearable pain, burning and spasms. That’s been my experience and I’m now in therapy and a believer in how these muscles can get out of whack. [ more ]
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J-Pouch ForumsHelp! Need advice now!
The first few weeks with a j-pouch are 'difficult' to say the least. I wasn't prepared for how it would behave after surgery at all. It definitely isn't like a healthy colon in the beginning. That said, you begin to try and thicken things up by using psyllium husks, eating soluble fiber foods - like oatmeal, and thickening foods in general - like peanut butter, cheese, potatoes. As Winterberry said, go easy on the sugar. I can cause pouchitis. I'd also suggest you try Imodium tablets to help... [ more ]
Thank you very much, regards Mark [ more ]
Hi, Mark. This is normal when your pouch is connected and starting to work. If you have the urge to go and it is uncomfortable, just go. Don't try to hold it. You can learn to do that in the days and weeks to come (learning to hold a little longer each time so that your pouch can stretch a bit). For now, after your system has been through so much, just go when you feel the urge. Don't be uncomfortable. Your new pouch is learning what to do. Remember that it used to be your small intestine... [ more ]
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J-Pouch ForumsGeneral Discussion
Thinking about you on your surgery day and sending the best of wishes for your smooth recovery. Remember to walk if you can to get your body cranking again. Rose😊🔆 [ more ]
Hope your surgery was a success and you start to feel better very soon [ more ]
Nick, hope all went well. 👍 Positive thoughts going your way. Aimee [ more ]
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J-Pouch ForumsGeneral Discussion
I take 3 before bed and 2 with dinner. [ more ]
Up to 8 per day (16 mg) is considered the maximum daily dose. It is reasonably safe at much higher doses, but there is no added positive effect beyond the 16mg, and side effects increase. I have read of no liver damaging effects, but if you have liver damage, it can build up in the body faster and cause side effects faster. I personally took the maximum dose for 4 years post op, then gradually reduced it over time. I currently take only one daily. So, over 23 years I have safely taken... [ more ]
My surgeon has said I can take up to 8 per day as necessary. That would seem consistent with most of the information on this forum. I don't take Imodium regularly not have I ever needed anywhere near that much when I do use it, but 8 seems to be the benchmark in as far as the amount that should not be exceeded. However, if you're uncertain about the amount you're taking or the effects of long term use, it's best to discuss things with your GI/surgeon. [ more ]
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J-Pouch ForumsGeneral Discussion
I had a fluid like something on my bladder per a CTscan after I was diverted to an ileostomy. I was admitted for an interventional radiologist to drain it to find out if it was an abscess. It was normal fluid that had accumulated there after the surgery and it would have dissipated all by it's self. During the next, and last, surgery my j-pouch was removed. My back side took the longest to heal but there wasn't a discharge. [ more ]
Richard, It can seep for quite a while...I know that it seems like a lot but a couple of tablespoonsful of liquid feels like gallons! Every surgery, I collect fluids behind my scars (infection? just clear or pinkish liquid sometimes)...rarely a massive infection but usually just seepage. I won't say that it is nothing but I will say that if it isn't thickish, greenish, yellowish or smelly than it is less dangerous. Some of us just build pockets of fluids and as long as they come out, we are... [ more ]
Thanks Sharon! I went to my gp yesterday and he sent me to the hospital. Surgeons seemed quite unphased by it, said it may have been a little infection but my blood cand back pretty normal. He said it looked like it had all came out which I highly doubted as my pad was still sodden with this mucus / puss discharge. He sent me home with a five day course of antiobiotics. Woke up this morning and it’s still leaking out of me at a fair old rate! Let’s hope these antibiotics work. Fed up of... [ more ]
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J-Pouch ForumsGeneral Discussion
B12 is absorbed in the terminal ileum, so if you have pouchitis or Crohn’s in the distal ileum, it can interfere with B12 absorbtion. Inflammation interferes with normal gut function. Jan [ more ]
Update and follow up question.....My B12 was 1106 in January when I was getting monthly injections and taking it sublingual daily. I stopped sublingual when the doc said just do the monthly injections. My B12 now (8 months later) is 465 and was tested right before my monthly B12 injection. I'm wondering what I should consider for ongoing supplementation as I am back to the low normal range (though my low was 247 before starting injections). My PCP isn't concerned, but is not... [ more ]
I took it for 3 months and the next test was through the roof. So I dropped to every other day, then 3 times a week, then twice a week. There is no danger with a high B12 level, but what’s the point? I don’t even do the subligual. I swallow it. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
For me, one of the very positive aspects of having a J-pouch is being able to empty it whenever I need to. I've taken to coughing hard when seated on the toilet and my J-pouch empties along with any gas I may have. So, before going on a lengthy car ride, etc. I take a few minutes to empty my pouch! I also limit what I eat to comfort foods if I find I'm going to be in a situation where I can't easily go to a bathroom. I think each of us has our own list of foods we consider to be comfort... [ more ]
Thanks Jeremy. For some reason I did not see your first post, so I have not done it yet. I will look into it. Have you seen the caps at other stores? I have actually done a lot of things to try and be less stressed about my course and I think that has helped a lot. As in, I have not had the issue since. So for once I may not make an A, and I can live with that. Is that what I want? Of course not, but for the sake of my health, I can accept that. (And if you think I am being mature, I am not,... [ more ]
Hi MCH, Just wondering if you tried the charcoal chaps? [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsHelp! Need advice now!
I never had a j pouch but was functionally incontinent for years pre-k-pouch. Same protocol as Bill...light meal beforehand (or no meal), empty out as much as possible and RELAX. As for the conversations...you need to have a sense of humour. So does he. You need to be able to discuss how you are feeling before, during and after...to feel free to say stop, wait, I need a break so that you can run and let the gas out or whatever...Then come back and feel comfortable. Also, put a pretty towel... [ more ]
I have never had any issues in 26 years although I can understand the concerns. As long as we are not talking about anal sex, judicious eating and judicious use of Pepto Bismol or Tums should nip gas concerns in the bud. My main Issue these days is ED, which sucks but has more to do with my age than my Pouch. Anyway good luck. [ more ]
During the 30 years I had a J pouch, I would be sure to empty before having sex. It was also helpful to eat lightly beforehand. In my case, it seemed that knowing what I would be doing had an effect in slowing bowel activity and preventing accidents. Anyway, you should explain fully about your condition and the possibility that you might have leakage during the act so there will be no surprises if it happens. Try to forget that you have a J pouch and enjoy your encounters to the fullest. [ more ]
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J-Pouch ForumsPouchitis
I am working for a while already, it has been more than 3 weeks since the re-do surgery, so far all is good. I will try to schedule the last surgery (ileo reversal) before the end of the year. The real test will come after that. I was told it looked really bad, nothing could be saved from the old pouch, so they constructed a brand new one. I hope it will work well. [ more ]
how is everything going [ more ]
Me to hope all goes well for you. keep in touch [ more ]
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J-Pouch ForumsOstomy & Skin
J-Pouch ForumsHelp! Need advice now!
I always lose my appetite while on antibiotics, although my appetite isn't great normally. It usually takes a good week after getting off of them to make a difference. I'm usually on the same antibiotics you are but it's all antibiotics that do it for me. [ more ]
No one can tell you with certainty. The stakes are pretty high, so it’s probably worth sticking it out and hoping for improvement, if you can tolerate it. If it gets anywhere near the point where you can’t stand it, give your doctor a call to discuss alternatives. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Gluten free for 6 wks and no antiibiotics or Imodium for 1 week! That’s the first time in 14 yrs!!!!!! I lost 15 lbs of bloat and my body feels risen from the grave. I’ve had chronic pouchitis since my j pouch creation and I was so uncomfortable and sick that o nearly threw in the towel and was considering reversal. No doctor told me to try it, I just decided to give at whirl. It’s crazy how much better I feel. I am so excited to hear that some pouchers are feeling better being gluten free❤️ [ more ]
Whoa. No. I'm way too lazy. Truth be told. [ more ]
Richard, have you considered making your own bread/ goodies, I agree it's intimidating at first but I've actually never purchased any "marketed" gluten free products. The flour is super cheap and you can find it at Costco!! I bake while I watch TV and then freeze loaves for the upcoming week [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsGeneral Discussion
Marypar, My 2 step surgery was also in 1992- stage 1 April 1992 and stage 2 July 1992. The dynamic duo of Gelernt and Gorfine gave birth to many pouches including some others on this board besides me and your husband. I have very good memories of both men and their oversight of my care in the years after surgery. Gelernt was a much more serious guy than his sidekick and spoke with the voice of God. I really felt like everything that came out of his mouth was medical Gospel and it was no... [ more ]
Long story but I had a septum develop in the Pouch which was preventing me from completely evacuating the Pouch. I knew something was wrong because it felt like stool was “hitting a wall”, and it was. It was surgically corrected by Dr. Gorfine. I think it was probably a good idea to cancel the appointment because for $650 he would be telling you there is nothing he can do and he would probably just rubber stamp what the Gastro already said. If there is a legit surgical issue it’s at least... [ more ]
Oh, I meant he did the dilation four years ago. We haven't seen him since and will cancel next week's appointment - sorry about that. [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks for the post BarbieG and thanks to all who responded. I live in Orlando and my GI doc recently retired. I've been looking for a doc with pouch experience but thus far have come up empty. I'm definitely open to traveling to Weston or Naples and will be scheduling with Drs Weiss or Phillips. Take Care [ more ]
Thank you all for the referrals. Still hoping I can find a good GI closer to Sarasota, not having any really difficult problems now except diarrhea. But a two and a half hour drive isn’t out of the question for the best doctors at The Cleveland Clinic in Weston [ more ]
I'm sorry , I just reread your message . I thought Dr Shen was here in Fl. I usually never travel to Ohio. So, you recommend Dr. Phillips in Naples. Is he a GI physician or a surgeon . I'll look him up . I see Dr Weiss when I have to seek help but would love to have a Dr closer to home for just routine visits. Thank you for your time to answer me back . [ more ]
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J-Pouch ForumsGeneral Discussion
I used to take VSL3# DS just after my takedown for like a month . Then I cut it out slowly. It was great in not letting build up of excess gas and I felt good. I slowly cut it down . Now I take no meds . There is some gas but I think my pouch and intestines are slowly absorbing more and I can hold much longer. Havent had any pouchitis so far or a blockage so its pretty much the same. But yeah its a good supplement overall in digesting foods when you are bulking and when you eat big meals. [ more ]
There have been many discussions of VSL #3 here, and a simple site search would provide you with tons of information. In my browser a magnifying glass icon is where Search lives. I use a maximal dose of VSL #3 DS (4 packets/day), and I’m convinced that it helps keep my chronic pouchitis at bay. I was able to persuade my insurance company to cover the prescription-only DS (double strength) formulation. [ more ]
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J-Pouch ForumsGeneral Discussion
Dr. Remzi's office called me back and sent me the new patient paperwork. Won't talk to them about an appointment until Tuesday, so I hope they can get me in sooner rather than later. I am also considering trying to get into the Mayo Clinic to be considered for a jpouch re-do. My rectal cuff is still diseased and I found out that several people who had he same surgeon as I have already had re-do's for the same damn issue. NO one told me the surgery could be done without leaving a piece of... [ more ]
first pouch had leaks and a sinus, I had a really bad ecoli infection after first surgery and almost killed me. I spent 10 weeks in hospital. I had several surgeries trying to fix it , but everything failed. had the redo. all surgeries at Cleveland Clinic. Irritation from the leakage, I would think or the pad I have there?? But Dr Shen states burning and irritation are very common issues with redos they are finding. Regrets, not really. I hate the minor leakage and this irritation but I will... [ more ]
Pouchomarx what was the original reason for the redo? Is the irritation from the leakage like butt burn? Any regrets? [ more ]
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J-Pouch ForumsGeneral Discussion
Uk is different to countries like USA! NHS bowel specialists are very capable, although some may prefer not to do a certain operation laparoscopic ally, ST marks is the flagship hospital in UK for research into bowel conditions and bowel ops. Any doctor that works there will be very capable. [ more ]
Hi Janindra is my surgeon at St Marks and with total honesty can tell you that you have truly 'hit the jackpot' !! I do not have anything negative at all to say about him or his team. I was referred to him for an extremely problematic ileostomy about 7 years ago and he then performed my 2 pouch surgeries. JW is very down to earth, he gives patients the time they need in appointments and has always really listened to me. He has always been incredibly thorough with all required tests and taken... [ more ]
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J-Pouch ForumsGeneral Discussion
I'm going to agree with Scott, I think you have pouchitis starting. Unfortunately, leaking at night is my number one sign that I've got the 'itis. (Usually from eating too much sugar, which I know better than to do, but it tastes so good!) Don't let it go to long before talking to your GI. [ more ]
Sometimes this is an early symptom of pouchitis. If that’s what it is, 10-14 days of an antibiotic will usually clear it up. I do take Lomotil at bedtime, which also seems to help. [ more ]
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J-Pouch ForumsGeneral Discussion
I tried everything medically offered to me. Probiotics, enemas, special exercises, special diet, fluids only, suppositories, yoga, a medical wrap that wrapped me up from pelvis to chest, and was offered anti depressants. I didn't want to do the anti depressants, because I wasn't depressed, just in constant pain from the clenching. Now I am perfectly fine. Without my prescription, I would be in big trouble. [ more ]
Before getting the oxy, did you have to prove that pelvic floor therapy, etc., did not work? [ more ]
I too had those painful fissures due to my pelvic wall refusing to quietly just do it’s job, the only thing that worked for me Is by taking Oxycodone to force the pelvic wall to relax. now I am able to work and live a normal life. The bad part is it took me a year to have to get on a program with a pain management specialist who understood my problem. And I have to go once a month for a doctors visit and they sometimes urine check me, as well as few other practices because of the ability for... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thanks again CT. It was all a bit of a shock to me to be honest as I hadn't even heard of polyps growing in a J pouch before my scope and when I see it on camera I just freaked out a bit. Now I have heard it's not completely abnormal I feel a bit better and I'm going to stop searching info because some of the stuff I'm reading just worries me. I'll just wait see what my results are and obviously start sticking to my check ups from now. Thanks again [ more ]
I am same as BillV, in 26 years had many dozens of polyps removed from my Pouch, all were biopsied and determined to be inflammatory polyps of no consequence. I have had chronic pouchitis and I don’t even recall an annual scope where they didn’t find one in the 26 years. I don’t think you need to worry, unless the pathology report comes back with something to worry about, which is unlikely. [ more ]
Thanks Scott My pouch was always bleeding from when it was created over 10 years ago it was ok for about 2 months then I noticed the blood. After 4 years of scope exams and trying what's the consultants advised nothing seemed to clear the bleeding up and I kinda felt nothing else could be done so just lived with the bleeding. I guess I should have persisted with my check ups as they would have noticed the polyp sooner. I just hope I have not left it too late. Thank you all for the advice and... [ more ]
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J-Pouch ForumsGeneral Discussion
Ok, So after dealing with almost two months of abdominal pain, I decided to drive to Cleveland Clinic and discuss this with my terrific gastroenterologist. After a thorough exam, he determined that I have pouchitis and SIBO. He prescribed Fagyl for two weeks. After only four days into treatment, I felt so much better! [ more ]
Hi Charlie All i can say is that over the years when i had the pains, i exhausted every option which included thinking it maybe pouchitis / SIBO, the relevant courses of antibiotics did nothing for me, they have done in the past though when i have had bacterial overgrowth. it was trial and error for a long time with myself before settling on the fact it was a type of nerve pain i was experiencing, maybe from stress or anxiety. Years of Amitriptyline brought minor relief, but nothing like the... [ more ]
Hi RB15, Ok, so today I had my appointment with my surgeon at Cleveland Clinic to discuss my abdominal pain/discomfort and to have my routine two year Pouchoscopy. He stated my Pouch appeared slightly red but otherwise, appeared ok. He took 16 biopsies. I mentioned to him about a possible correlation between SIBO and Pouchitis. He said he has not read anything that confirms it so that idea is still on the fence. Have you read any studies that confirms it? My surgeon wants me to finish the 6... [ more ]
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J-Pouch ForumsGeneral Discussion
I found this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3424428/ Vitamin B 12 Deficiency The physiology of vitamin B 12 absorption is complex. Vitamin B 12 is liberated from dietary sources by acid and pepsin. R factor is released in saliva and binds to free vitamin B 12 to protect it from degradation. In the duodenum, R factor is cleaved by proteases, allowing vitamin B 12 to bind to intrinsic factor produced by the stomach. This complex then moves to the ileum, where it is absorbed by... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hi Sweetie, Yes, long time no hear but I think about you often...Especially recently when I reposted a post about k pouch leakage and anti-depressors (serotonin uptake types like Prozac)...the poster is a scientist and does medical research so she used her own case as a case study and found that the usage of the meds were directly causing leakage...so there may be something going on there in your case as well. Please consider testing out her theory...it may be a possible answer...I have... [ more ]
I am also not an ostomy expert and have not experienced valve problems. Since your valve is currently not leaking, I would be inclined to delay surgery. When it starts leaking again, you could try leaving a catheter hooked up to a leg bag 24/7. That should result in less external skin irritation than conventional ileostomy appliances. I do not know if there are any surgeons who could repair your valve without using more small intestine. A dietitian might be able to suggest foods that would... [ more ]
Is there an option to wear a two-piece ostomy appliance to catch any leakage from your existing K-pouch? If so, that might be no worse than an end-ileostomy and could potentially avoid another surgery, or at least delay it considerably. If the problem comes and goes, as yours is seeming to, you could choose to forego the appliance completely until things flare up again. The bag would have to be removed from the flange for normal K-pouch emptying. There may well be reasons this isn’t... [ more ]
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J-Pouch ForumsGeneral Discussion
I was having feelings of incomplete emptying despite pelvic PT and had one done at Cleveland Clinic (ordered by my doctor Bo Shen...the rumors are true - he is amazing). The test can show any structural issues that might also be going on with the pouch. It was quick and painless, and instant results. If you have ongoing issues I think it's a good idea to explore vs. risk waiting and suffering. BUT - be sure you have a doctor that you're confident in when it comes to handling any results. I... [ more ]
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J-Pouch ForumsGeneral Discussion
CT is highlighting a useful point but putting it too strongly, I believe. It is generally better to rotate antibiotics as he describes if you are able to find more than one that works and is tolerated. If only one does the trick then it’s not only acceptable but quite appropriate to stay on it. You may or may not have problems if you stay on a single antibiotic. [ more ]
Two months on any antibiotic is unacceptable. You have to rotate or long term you will have problems. I would not be on any one antibiotic more than 2-3 weeks before rotating. Xifaxin in my experience has less of a thickening effect than does Cipro and Flagyl. And it’s good to have in your rotation because it’s not systemically absorbed but if you stay on it too long it will lose effect. [ more ]
Update: I wanted to give an update in case it may help others trying Xifaxan/Rifaximin. It seems my gut was just adjusting to the Xifaxan. I took one capsule one time of the psylllium husk. Nightmare constipation, which is never my issue. Cipro and Flagyl have offered welcome levels of constipation, given I usually have the reverse issue. I was also having stomach aches during the first weeks of Xifaxan (during the higher load dose). As my body adjusted and the dose was reduced, the stomach... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsFAP Forum
Hi, I'm sorry you are faced with this life changing medical condition. You must be very scared, especially having children and so many other concerns. I had a complete colectomy and a J-Pouch installed when I was 20 year old (27 years ago). Maybe surgery is easier to handle when we're young and have less people relying on us to be well. I know this is not the case for many people on this site, but my quality of life completely improved after surgery. The first surgery is major, and recovery... [ more ]
Sara, let me begin by saying that the majority of people with J pouches do better in terms of pouch function than I did. I averaged around 12 bathroom stops a day, had butt burn , leakage and did have to watch my diet a bit. I learned over time how to get the best with what I had, knowing that the last thing I wanted was to get stuck with the bag (pun intended). I remember skiing all day at Vail, Colorado and deep sea fishing in Cabo San Louis, Mexico without a bathroom break. Although I had... [ more ]
I did not have FAP, but my ulcerative colitis came on very quickly in April 2015 and by November, I had my first of 3 surgeries, two different ostomies (an end and a loop) over 9 months with the final takedown. I have done pretty well and find I am able to do most things I did before my j-pouch. I think my biggest complaint is that I sometimes have leakage, but not a lot and usually because I waited longer than I should have to make a bathroom trip. There are other minor inconveniences as... [ more ]
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J-Pouch ForumsGeneral Discussion
Tinam. I very sorry I didn’t no reply to your post. I don’t got on here often. Did you have a twisted j-pouch? I hope everything is well with you. [ more ]
Thank you for your sharing your story Sharon. [ more ]
Hi Tina, Well, we are all different and our pouches react differently but in my experience, a twist (when it came on suddenly) felt like a mule had kicked me in the gut. I drank a can of diet coke strait up (not the smartest move ever!). I was house cleaning, bending and twisting) and lay back on the sofa, with my legs up against the back of the sofa and suddenly I was doubled over on the floor screaming. I knew what it was even if it had never happened that way before...so, I did not... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Thanks ShaunC [ more ]
Thanks Bobish....I'll search the forum with any future questions. [ more ]
Thank you....agree it can't hurt to shop around. I just relocated to the Wilmington, DE area and will need to do some shopping and find a good GI practice familiar with the jpouch. [ more ]
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J-Pouch ForumsGeneral Discussion
Thank you for your response! I have a j pouch done at the Cleveland Clinic...I am not familiar with a Koch Pouch. [ more ]
Thank you...I am just trying to get some meds so I can go in with a list to my doctor. I appreciate your help! [ more ]
I have congestive heart failure. I take Coreg and Zocor. For blood pressure - I take Linsinopril. I have no problems. My blood pressure is a bit too low. I get a bit of lightheadiness, but presents no real problems. By the way I have a Koch Pouch. By Dr. Joel Bauer. Mt. Sinai in NYC. [ more ]
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J-Pouch ForumsMen's Health
❤️
Thank you Doug .....I hope full function returns for you. My GF Just visited from Calif for ten days and it was great. She wanted to get some use out of me in case my surgery makes him go " Plop " lol I. have no definite date for the surgery so she might come to Visit again...all the way to Ireland . We've only known each other for a year and sex with the Baggie was just fine ...Great in fact so We both hope he works afterwards !! Magoo [ more ]
I have a loooong story with lots of factors but here's the abridged version... I had a sub-total colectomy in 2011, delayed j-pouch decision until this year. I decided against j-pouch and had proctectomy surgery at the end of May. Previous to that I had my first girlfriend in 15 years and sexual performance was excellent. After surgery not so much. I could get aroused but couldn't maintain an erection and could ejaculate without a full erection. While it seems logical the problem is related... [ more ]
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J-Pouch ForumsK-Pouch Korner
Kim Have you read the post about anti depressors? Not sure if this is your case but I found it interesting that for some people it may explain unexplained leakage. ... just in case, check it out on this forum. I hope that it is nothing serious. Sharon [ more ]
Well, things were going great after the 2nd revision (June 18th), but I am back to experiencing leakage. At first it was very small amounts, but it has been increasing in amount and frequency. The only good thing is that it never leaks while I sleep. I have an appointment for an ileoscopy on October 24th. This has been a very trying 12 months. After almost 37 years with a K pouch, 35 of those years with very few issues, I'm so frustrated. I may put the NuVal back in. [ more ]
Kim--fantastic news and congrats. the bruising feeling lasted with me for many weeks and indeed it is bruised. would be good to know if there is anything one can do to relieve the problem. hope you are able to rest and stay cool to continue the healing. best wishes, janet [ more ]
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Join Us!
Founder, Creative Director & Web Master
William J. Johnson
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.
Forum moderator and advisor
Jan Dollar R.N.
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