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Ive had my Jpouch for over 30yrs and find that medicine designed to help slow the system down, lomotil, Imodium, pepto bismol no longer work. I find myself having to take narcotics for its side effects to slow me down. 

Is there anyone out there that is in the same situation as I am? And do you have any suggestions that may help.

 

ytcrockpot

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My pouch is 24 years old, but I've never needed thickeners or things to slow stuff down. My older pouch has finicky times where she's TOO thick and/or slow.  Most meals now take 8-12 hours to come out, just as a rule. I take a mag sulfate a day to keep things "looser."  Wish I had some advice for you as to what I do differently, but I don't think there's been anything special. I sometimes wonder if I had a longer than average small bowel to give me more time to absorb water?

 

What is your diet like?  Perhaps knowing that we can glean some insight and offer suggestions?

My pouch is over 30 years old and I never needed things to help slow down output... just in the very begining. Since then, it has been actually quite the opposite...difficulty emptying which my docs attribute to chronic pouchitis as nothing else shows up on all kinds of testing and scans. I have been on various antibiotics for many years and a course of entocort, both of which help significantly, as does watching what I eat.  Mainly I need to avoid too many carbs or eatingvery large meals. Smaller meals throughout the day help me.

I am going on 26 years this April.  The past 6 years I've had problems.  Before that NOTHING.  now I am on lomtil just to try and slow things down and watch really hard not to eat before bedtime and careful on quantity of food.  try to eat small 6 x a day instead of large 3 x a day.  plenty of fluids too.  I also am on B&O suppositories and antibiotics.  I'm not sure if you are having the same issues that I am having the loss of blood flow to the j pouch?

I'm coming up to 20 years with the pouch and the last 3 years I've been struggling with pouchitis and have tried every combination of antibiotics and injections, etc...and also finding that narcotics work best to slow things down for me.  I have been taking 1 and half a tablet of tylenol 3 at bedtime and whenever needed during the day and sometimes a bit more, but I try to keep it to less than a full tablet, otherwise it slows things down way too much and then I end up blocked and becomes very painful.  I'm always afraid that I'm too dependent on it but it's what gets me through the night and the day.  I've recently tried acupuncture and chinese herbs which have helped somewhat with how often I need to take T3, which I guess is better than having to deal with the antibiotics that don't work and their side effects.  This is my course of treatment right now till I start a new injection called Vedolizumab, fingers crossed.

Hit 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 glass is always half full.

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