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Hi all!  I just joined this forum.  I have never sought out advice regarding my disease - but I think it is time.  I suffered with what they said was Crohn's for 20 years (I'm 32) and in July I had my J-Pouch surgery.  My small intestines has always been healthy and the Pathology when they took it out said it looked like Colitis.  Regardless, I had my colon removed.  I am almost four months out from my take down surgery.  The reason I had the surgery to begin with was I had taken every medication and NOTHING helped. 


At this point, I have ok days and really bad days.  I have been on Cipro for an entire month - I have had some bad pouchitis and everytime I come off the Cipro it comes right back.  When I am on the Cipro I feel ok - I have solid stools - but I still go 12-20 times per day.  I feel like I cannot empty my pouch completely.  I cannot sleep though the night - I am up almost every hour (on a bad day) or at least 3 times a night on a good night.  


Has anyone else suffered like this?  I am still waiting to feel glad I went through with the surgery.  




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Cipro may not be your best choice if it gives you solid stools. That is not what you should strive for with a j-pouch. You need a more loose stool in order to empty properly. The pouch does not have the same musculature as a rectum, so basically empties by gravity. When you don't empty properly, then you get stasis and bacterial overgrowth. 


Another consideration is that you've developed an anal stricture, which prevents effective pouch emptying. It is a very common complication.


Hope this helps.



Yes, I suffered similarly after my takedown. It was miserable. My best guess - possibly some bacterial overgrowth but likely just my body healing up and my gut "adjusting" back to equilibrium. The process was slow to improve, and my doctor would not prescribe Flagyl or antibiotics. I was going as often as you or more, and nights were miserable for months.


Hope that communicates empathy - I get what you are going through, and it sucks. It should get better - keep looking for new ideas and trying new things. Probiotics probably made the first difference for me and over time fiber helped as well. I had my takedown in 2006, and would guess that it took me until 2014 to get to where I could fart "normally." That was after trying many things over time. Currently I eat Metamucil wafers with every meal, am on sulfazine, and take Prilosec once daily. All seem to help me out significantly. Not sure if those things would have helped early on after takedown.



Welcome. The first year is the hardest. It takes time to heal & adjust. Cipro has some bad side effects. Read up on them. I can't take it anymore. The only drug I take for pouchitis is Xifaxin & Levsin. Lomotil stopped working on me. Took it for 20+ years. I guess it was good to get off it. Take OTC Imodium now. I like to have loose stools so I can empty easily. I don't put on weight either! Make sure you eat a low residue diet & chew your food well. Yogurt is great if you like it. They make a white fiber pasta now that is good too. Oatmeal is ok but don't overdo the fiber at first. Your body needs time to adjust. But everyone is different, some can eat anything w no problems. Not one of them. Over the many years, I have added allot of foods that satisfy me, Caesar salad, grapes & nuts that are chewed well, sweet potatoes but not too much, well allot but no mushrooms or popcorn. 

More advise, go to sleep on an empty stomach. Drink lots of water. Good Luck, you are not alone! 

My 17 year old daughter is 12 weeks post takedown and went from 20 plus BMs a day to 8-12 (ish).  Imodium doesn't do much, metamucil helps but diet is the key I think. We can really see the difference when she eats bland compared to whatever she wants.  No sugar, no dairy for her. 


Also she just started going to a physical therapist who only works with people with contenence issues (bladder, constipation, diarrhea). She said she has had some good success with jpouch patients. She uses exercises and biofeedback. I feel like this is going to help and so does my daughters.  She also has problems emptying completely.  


It may be worth a shot to ask your dr to prescribe this kind of physical therapy. Good luck, it will get better!!


Like Connie, I have never asked for advice from a forum group. But I am at my wits-end! I have had my J-pouch since 2008 and continue to have severe internal pain and the inability to empty my pouch (which contributes to the pain, I am sure). My surgery resulted in ani-levator spasms (a complication of surgery) which causes severe pain to the pelvic floor. Added to that, I find very little that I can eat.  The banana, rice, applesauce, toast regimen does not seem to work for me.  The only thing that I find I can eat is fish. I need help in reducing the acid-like internal pain which I believe is caused by stool in the pouch and learning how to empty the pouch without taking 2 hours to push even loose stool out! My doctors give me a blank stare when I mention the first and they can find no stricture or other reason for the pouch not to empty. I am working through the food issue one food at a time. But it is hard to know if the food is causing the problem or the levator spasms or something else.  I need to resolve the pain before I can identify which foods I really can eat. I would like to know if anyone has tried a bile binding medication in an effort to neutralize the bile acids and thus, reduce the acidity of the stool? Or maybe, there is something else that has been tried that does the same thing? Any help in this regard is greatly appreciated. Seven years and counting is way too long to be in such constant severe pain.

Some people do get relief with Questran (cholestyramine), which binds bile acids, so it might be worth a try. It comes in sugar-sweetened and artificially sweetened (Questran Light) forms. It may firm up the stool, so use it carefully. It also binds many, many medications and has to be timed well away from them.


Have you tried biofeedback or pelvic floor physical therapy? These can be quite useful to some in dealing with a dysfunctional pouch.

Last edited by Scott F

Welcome to the forum.  My husband has had his j-pouch for 20 years (in fact, today will mark 20 years..D-Day) when he got 'reattached'.  I wish you better days.  It will get better, my husband suffered through so much with his colitis.  He never went into remission,he was on steroids, which made things worse than the disease.  You will get through this.  You have come to the right place for advise and guidance...

I know sugar gives me gas & makes more acid & output. I also have very acidic loose stools. Sugar also gives me pimples at my age! So it's easy to stay away. I am more of a salt craver.  Tried eating Tums often & tried acid reducer pills OTC, nothing helped. 


Tenacious, I had trouble emptying my pouch & found out it was installed upside down. Had surgery a few years ago to correct it & am much better now. I also lost all my extra weight.  Had my original surgeries in 1994-5. I am glad I had the surgeries. It was hard for the first few years but I didn't eat the right foods.


I was on cortisone allot before surgery and gained lots of extra weight. I was always hungry. Now I find the less I eat the better I feel. Eat oatmeal for breakfast, yogurt for lunch & maybe toast w peanut butter for snack. Dinners could be anything, I just don't stuff myself. I usually have pasta, rice, potatoes or bread with some protein, meat or chicken and a smooth veggies. Salad a few times a week, but only romaine lettuce. Chewing your food well is very important. I cut up everything small too.  I use the old triangle balanced diet. Lol. I keep really hydrated, drink water w lemon, G2 Gatorade, decaf diet iced tea and one cup of coffee a day.  


Mary Beth, Would like to to find time for biofeedback but I just can't seem to sit still. Love doing project around the house. There is always something to do! I really need some me time. Does ins. usually cover the cost? 


Scott, do you need a doctors prescription to get the Questran? Do pharmacies usually carry it or is it a special order? I would be interested in the light formula. I have kidney disease from being given Toradol in the hospital for a month. I guess I need to talk to my nephrologist first. 


One one day at a time, right? 

Last edited by BarbieG

BarbieG,  The biofeed back really doesn't take that long. Lily will go in every 2 - 3 weeks for an hour then do the exercises at home. Lily says she does them throughout the day instead of all at once. I think it may be helping, she is slowing down a bit if she also eats the right food.


Also, we just went to a dietician suggested by her surgeon who specializes in the low FODMAP diet. I had read about it but I think it will be much easier to follow than I thought. Plus only 2 weeks then she will reintroduce the foods.  It really makes sense so hoping it helps as well. Only thing is, I want Lily to stay away from foods that cause inflammation as I'm afraid of other auto immune diseases. I guess one thing at a time. There are so many diets out there!  The Auto Immune Protocol seems IMPOSSIBLE to follow!


Good luck to you!

Scott F

just took my first dose of Questran tonight. I hope it helps. I'm tired of diareaha!

My GP  thought it was a good medication to try. My cholesterol has dropped to 166 since I started eating oatmeal for breakfast about 7 months ago. I wonder if it will drop more, have to read up if low cholesterol is bad? 

Will keep you posted on my results. Thank you so much!

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