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My  J is 19 years old now. My surgeon who operated on me in 2001 introduced me to loperimide and i was always told its a benign med and would be effective in controlling /slowing frequency and diarrhea issues. This being said, My local gastroenterologist whose care ive been in since age 23 has discontinued being interested in prescribing it for me on the basis that he thinks if i requested a larger supply per month be faxed to my pharmacy where by instead of 120 pills a month totyalling to take 4 x a day i asked about 6 to 8 x a day so a larger quantity and he said the drugs is acting or giving a placebo effect and its really not benefitting me to take it any longer as he thinks my body/gut used to the medicine and its not doing the job.


i would like to know what others jpouchers experiences have been? are your gastroenterologists on board in continually prescribing it/and believe it is helping you/and you are benefitting from its use?

eventually the guy is going to retire anyway as he is already 70 y/o and i'll need care elsewhere perhaps a teaching hospital to take over my care. i need life long surviellence for the fap/gardners varient polyposis that i have. And im thinking mayhaps anopther gi guy wont be so adement/negative about the loperimide.


i did explain i feel more secure with it than not having it to him and he proceeded to say it has narcotic effects to it.

i go in for a flex sig/pouchoscopy next on oct. 7th wednesday   for my once a year followup/surviellence


i have my sigmoid colon intact which is the last 6 to 8 inches or so of rectum and then the pouch attached up above.  not what most jpouchers have which is the spincter/small 1-2 cm cuff area and the pouch, for reference.


thanks for any/all feedback!



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Loperamide is available over the counter, so you certainly have the power to do the experiment of 6-8 per day and see if it makes you feel better. The product labeling suggests a maximum dose of 16 mg (8 capsules) per day for chronic diarrhea. I don’t think the narcotic effect is appreciable at those doses.

OTOH when you take a maximal dose of a medication you also maximize its potential for side effects. It can sometimes be safer to try additional unrelated things. For example, have you tried adding soluble fiber (e.g. Metamucil, Benefiber, etc.)? Is it possible you’re aiming for the wrong target (e.g. fully formed stools)? Is it possible that things would be about the same if you took *less* loperamide? I don’t know that any of these ideas will be helpful, since the only thing you’ve really told us is that you want more loperamide than your doctor thinks you should take.

okay for starters, i am am a medicare recipient and i have medicaid. so silverscript is my part d prescription drug plan.  Therefore, Im not obligated to have to "get stuff/meds" over the counter and pay out of pocket with cash when its covered when the doctor writes things on me on a script and faxes to pharmacy. Yes, even miralax for my pouchoscopy prep, its over the counter, however with my insurance i can get almost anything covered as long as its faxed over/called in by the staff or doctor on a script  and is in the silverscript part d formulary,.

secondly @scott, no i never experimented with fiber/soluable or not.  do note, i over came an acute case of chronic kidney disease 1 year ago which i had 2 years before it reversed probably due to acute tubular necrosis or  diabetic nephropathy or a combo of those two. Nobody could tell me what happened but i had whats known as an aki/acute kidney injury and went to acute kidney disease to kidney failure and required 3  icu setting session of bedside dialysis. this was last year june 1 thru 6th 2019.  that being said, while i have to be more careful than other folks with meds and potential side effects id be considered about other medicines to control frequency and combat/help diarrhea issues.  I drink the 1 gallon water jugs 3/4 to almost the whole gallon in one day. im always worried about my kidneys because of what happened and as a result of this i think the excess water intake may be moving my bowels along quicker than i like resulting in increased/diarrhea and frequency.  Ive expressed to my doctors and gi that i drink the above mentioned quantity of water per day on a daily basis.


i hope that i have clarified @ct barrister claiming he does not understand my questioning and/or  post.  loperimide is suppose to be the  medicine of choice as its benign and my gastroenteroligist no longer wants to prescribe it and said find another doc if i wish that will prescribe that med for me but he wont.  im with the same g,i since a few months after diagnosis and subsequent one step jpouch surgery w/ a sub-total colectomy not proctocolectomy like the majority here.


i hope ive made it more clear after this post.


OK thanks for the clarification. And while you are not obligated to pay for over the counter meds that are covered with a prescription by Medicare/Medicaid, you are nevertheless free to do so if you choose. I understand that buying a quantity sufficient to take 6-8 per day isn't inexpensive. It's also a large quantity and way more than what I could tolerate. It makes me wonder if your Doc's concern was really that you have built up a resistance to the drug such that it's not effective except at much higher dosages bordering on what is considered unsafe. I don't know if that's the concern but your dosage seems very high. If I took even 3 in a day I would be massively constipated for a week. Apart from that if you need the drug and need to take that dosage maybe another GI Doc should be engaged at this point for another opinion.

Last edited by CTBarrister

Ct, glad you understood after the clarification.

GI doc does feel that I have built up a resistance to the loperimide and if I feel I was getting benefit by it doing some work in helping he felt that it was just a placebo effect.

We ended phone conversation on that after my next forth comming pouchoscopy on October 7th,  he might give another medicine a whirl concerning my frequency. My kidneys are well after the recovery of the Aki last summer but I just have accustomed to drink that much water 3/4 a 1 gal jug daily to a jug a day. At night after urinating/BM I drink water too as being a type 2 diabetic you battle. With dry mouth syndrome.

I questioned home on lomitol and he said he doee like that drug either and that it wint be effective.



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