I need to find out if Lomotil is a drug that others with Crohn's take on a regular basis. I've been on Lomotil since my take down in 1990. I was taking 3-4 per day and went to the bathroom 7-14 times per day depending on whether I had an attack or not. Last January, I went to see a surgeon in Dallas to check my pouch and rect. because fo some pain I was experiencing in that area. Afterwards he said he was encouraged with what he saw, that my pouch was in good working order. This was confirmed by Dr. Shen a couple of years ago. I had been advised by an Oklahoma U. doctor here in OKC that I needed the bag. He was insisting that I needed an Ostomy. NOT TRUE. I am not seeing him anymore. Dr Shen said NO to the bag because I would end up with short gut syndrome. OK, question: the surgeon told me that the pain was because of the frequency of my BM's. He has many patients who take as many as 8 lomotils a day. He also said that I can supplement it with OTC Immodium and 1 pill of Fiber per day. It was like a miracle. Now, I don't go more than about 4 times a day and it is formed. I am able to hold it a lot longer than before if I needed to because of work or golf. My quality of life has changed for the better and significantly so. Anyone else has had this experience? I don't seem to have any allergic reaction to Lomotil at all.
I must add that I am on Cipro right now because I have been bleeding a bit, but all else is the same as I described above.
Jan, I would also like to hear from you on this. What say you?
Original Post
I find this interesting as I have had a jpouch for three years and never take lomotil or immodium but I am on antibiotics often. Imodium binds me up and bloats me. I never had luck w lomotil either and my GI prefers Imodium as he has indicated it does not cross the blood brain barrier ( does this mean it does not have a narcotic effect?).

At any rate, if you are functioning better on the medicine that is good news.
This is one of those things that is individual. Lomotil on a chronic basis is safe. It is a controlled drug, but the abuse potential is extremely small. They add a small amount of atropine to it to make it intolerable to take in mind altering doses.

That said, some people are very sensitive to even small amounts of atropine, and get the characteristic dry mouth, palpitations, and "jitters" from therapeutic doses of lomotil. Imodium has no atropine, so it does not cause those issues. Supposedly, Imodium actively works to increase water absorption, but I am not sure that it is significantly different in that respect.

Lomotil has been around a lot longer than Imodium and was used for many decades for high output ileostomies and chronic diarrhea. Imodium just has a smaller number of side effects and does not require a prescription (at least not any more). It was a prescription omly med for a long, long time, just like many of the drugs we can get OTC now.

So, long story short, don't worry about your use of lomotil. It is fine. Just more hassle for your doctor (schedule V narcotic).

Jan Smiler
okkstfan,it all sounds great to me.. 4 times a day..wow..so what are you taking that got you this results..and whats a fiber pill?dr shen likes ammonium up to 8 a day..this week not needed any but am on levaquin which i haven`t used in long time..when i took lomitol i did have terrible dry mouth as i recall..

but sounds like you are doing great..
The fiber I take is any fiber that is OTC. I bought mine at CVS, their brand. I asked the pharmacist about the best one. I take 1 tablet a day. It firms things up with no side effects. As far as the Lomotil is concerned, I took 4 per day since my take-down in 1990. Apparently, that wasn't enough to slow my system down. The older I got the more frequent the BM's became. So, the surgeon said he has several patients who take as many as 8 per day of Lomotil and they do fine. He said I can even supplement it with Immodium. I want to tell you it's been like a miracle and NO side effects from this dosage and the BM's are almost like someone without a J-Pouch (I exaggerate a bit). My quality of life has improved. Now I can go to golf tournaments and play golf without the fear of not being able to find a bathroom. It is important for me to state though that this does not prevent me from a Crohns attack. I have been on a combination of Flagyl and CIPRO for 5 weeks and the bleeding has stopped and I am feeling a lot better.
BY the way, the reason I went to see the surgeon in the first place is to see if my pouch was still sound and find out why I had such constant big amount of pain and burning in the rectal area. With the reduced number of BM's, no more pain there because of less acid irritation. Too bad some are having problems with Lomotil and Immodium. For me, it's a miracle drug.
I hope my story helps someone else. Here's to your good health and happiness.
Oh and Jan, thanks for your comments about Lomotil and Immodium. It does make me feel better when I read that I should not worry about taking this medication with that kind of dosage. I really am fortunate I guess that I have no bad side effects from taking Lomotil specially at such high dosage.

I have had a j-pouch for 16 years and have never tried lomotil. 

I think it’s time to give it a try.

i read that it can strongly interact with alcohol. Does anyone have anything to say about that?

Can I have a beer with my dinner or is it off limits?

Lomotil doesn't have a particularly strong interaction with alcohol. There shouldn't be a problem having a beer. Flagyl sometimes interacts very strongly with alcohol, but you didn't ask about that.

I take Lomotil at bedtime and before getting on a boat, and that generally completely eliminates the most inconvenient bathroom visits/needs (while sleeping or far away from decent bathrooms). I would never use it to change the consistency of my stool - psyllium does a better job for me with that.

Thanks for the feedback, Scott.
Can you tell me more about how you use psyllium?
I've been doing this for 16 years, but never really had much advice. I'm currently train for a 100-mile trail run and I'd really like to get a little more control over things...

 Hi my name is Cindy I'd like to respond about the psyllium husk. I've been using psyllium husk for the past 10 years. I swear by it, has  save my life pretty much. I get it from the vitamin shop 1 teaspoon before breakfast lunch and dinner and I have formed stools. when I don't use it which is very rare, it makes a big difference.  You do have to mix it with water about a half a cup, mix it quickly and then drink it quickly otherwise it gets real thick and gross. I also take Imodium  for tablets a day daily . I get that from Costco generic it's way cheaper than the brand-name. 


Hi All, I take immodium 2x/day (once in the morning and once around dinner time). I have lomotil, but rarely use it. I have not done psyllium husk, but I know many other J-poucher's do this. Immodium stays in your body for about 10 hours and that is why I find 2 tablets (which I get from Costco) a day sufficient.

I have taken low doses of lomotil on and off for 14+ yrs for pouchitis symptoms. Low dosage for me = 1 or 2 tabs at 2.5mg.  For past 5 yrs I have used it more regularly and at higher doses = 2 tabs in AM and 2 before bed.  In addition to my Cipro treatment, this helped control frequency.  Lomotil at these higher doses occassionly left me feeling tired mid-afternoon - something alleviated with a 15 min snooze.


Bigger picture for me: ~6 mos ago I developed fairly severe dermatological issues with bright red, itchy, scaly rash on both hands and wrists.  Itchy like poison oak, but without the oozing sores.  My wife (an internest) found an article on acquired dermatological sensitivity to lomotil in users of 5+ yrs.  I quit the lomotil cold turkey and symptoms have improved a LOT.  Not gone yet, but I think this is the cause.  After reading Jan's comment about the atropine component, I now wonder if Immodium would be tolerable?

Darren, it’s certainly possible that the rash was from atropine (rather than diphenoxylate), or even that it was a diphenoxylate reaction that you wouldn’t get from Imodium. It’s probably worth trying the Imodium, IMO, though there’s some small but hard-to-estimate risk of it exacerbating the rash.

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