Imodium/loperamide question

[Wiggles]

Hi all, hope you're doing ok so far in 2010.

I am wondering whether anyone has had a similar reaction to imodium/loperamide to me and can shed some light on what it means.

I have been diagnosed with Crohn's in the terminal ileum as of about 10 months ago. My symptoms are basically limited to D of varying severity (no blood), some pain and discomfort, and weight loss. The diagnosis has never risen above "consistent with Crohn's" combined with an absence of any other satisfactory diagnosis.

I have been through the usual introductory drugs/treatments (steroids: work but turn me into a serial killer; pentasa: made me sick; questran: did nothing; salofalk: seems to do nothing; diet: inconsistent but seems to have some effect).

However one thing which has a dramatic effect is imodium. If I take even half a tablet it will stop my everyday D within an hour. During severe episodes 1-2 tablets will absolutely shut me down. When things do start moving they are generally as close to normal as I can recall normal being for 2-3 days, before my symptoms return.

Basically even a very small amount seems to shut things down, and once my system is calm I get a couple of days of regular, healthy BM before problems set in again. To me this suggests that something in my system is causing spastic BMs, and that tranquilizing things with imodium is enough to stop this problem. Other than a bit of cramp/gas I don't get any other problems from using the imodium.

Has anyone else had a similar experience? What does it mean?

My gastro-enterologist is somewhat stumped as he says typically with Crohn's one would expect imodium to be marginally effective but not to totally stop things up.

 

[Wiggles]

I should add - my diagnosis is based on endoscopy/colonoscopy observations and biopsy results, so there is definitely something going on in the walls of my terminal ileum.

 

[Peaches]

Hey Wiggles! Before I was diagnosed and before Imodium was in tablet form (geez, I'm showing my age!), I used to swig it from the bottle. I lived on the stuff for years. And, as with you - it had the same effect on me. I could use it to modulate things somewhat and feel kinda "normal". But, after a few days of not taking it - back to the big D. That was when my disease was rather mild IMO - again, I hadn't been diagnosed yet. My disease is primarily in my colon though. If I take it now - not so good. I have even almost fainted from it before - have no idea why. So, I avoid it. Other thing to remember with Imodium - if you ever develop narrowing/strictures - you need to be careful about taking it as you can get obstructed.

 

[Wiggles]

Hi - thanks for the reply. I don't have any narrowing so I don't think that's a concern. I wonder if your fainting experience is to do with water levels, I gather taking 'stoppers' helps your body reabsorb water but maybe its not used to that any more.

I suppose it is my GE's comment that imodium being super-effective is inconsistent with (solely) Crohn's which made me prick up my ears - I am wondering if it points to an associated IBS condition. I am tempted to try using imodium regularly at a very low dose to see whether I can achieve stability that way, but I'm not sure whether that's a bad idea.

 

[Peaches]

I disagree with the assessment that it couldn't totally "stop you up" because you have Crohn's. I think that has to do with how active your disease process is. I have had it stop me up for days and my twin has Crohn's and has had the same issue! Silliness. If you don't have any narrowed areas and your GI is ok with you taking it - I would certainly USE IT. If it helps your symptoms and helps you to lead a more normal life - why not? That is exactly how I used to use it.

 

[Brrenda]

I recently discovered Immodium and find it helps a lot. I still get gas but at least during flare-ups it allows me to not go constantly. I am still going and am not stopped up or bound up so I'm very glad to have found it. If it did stop me up to the point I was needing a laxative, I'd not take it again.

 

[Crohn's 35]

HI Brenda, welcome to the forum! Would be so great if you could make a thread of your own to tell us your journey on a Your story thread. That way we can all greet you and learn about you and Crohns!

 

[Tabrizly]

Tabrizly

I have recently been diagnosed with mild corhns and I am having exact same symptoms as you described. I also did take lopermide which is generic form of Imodium and it did work. i usally take half pile in the morining and half at night and it makes wonders for me. I mean I am like normal person. I was also wondering where these spasms come from that lopermide is able to control them and it is a simple over the counter anti D drug.

 

[Grant]

Agree with Peaches, I've been using Immodium in both capsule & syrup form for years with strictures. For me the narrower the stricture the more the diarrhea "jets" out under force & it makes my life miserable. At least with Immodium it gives you some relief.
With strictures on a low fiber diet if you start to block in my experience its because of the narrowing not immodium. Once it gets to a certain point when its gone tiny then I need laxative just to keep things moving but IMO immodium has a role to play in keeping our lives ticking over.
Thats my experience anyhow
Rgds
Grant

 

[Fizzifish]

I have had Crohn's for 24 years. Last year I had a bowel obstruction which led to a 2 month hospital stay and surgery to fit a colostomy to bypass the obstruction. To cut a long story short, while I was in hospital a gastro specialist suggested I open up the loperamide capsules and sprinkle them into a dessert. He told me to take no food or drink for half an hour before and an hour afterwards to enable them to work properly. I was on a massive dose of loperamide (prescribed by the consultant) up to 32 tablets a day! I used to take 4 doses of 8 tablets every day while in hospital. My Crohn's was very severe in hospital and I was passing up to 7 litres of fluid through my colostomy in a 24 hour period. Gradually my output slowed and I eventually got out of hospital. I was started on Infliximab infusions every 8 weeks which really seem to be helping. I still take loperamide as and when I need to. I can go a week or two without taking any but then I will need to take them again to slow my bowel. I take up to 12 tablets at a time sprinkled into a Mullerrice and have really been able to manage my bowel effectively like this. I usually just take a dose in the morning before work but sometimes if my bowel is really active I take another dose before dinner.

Loperamide is a very safe drug because it ONLY acts on the bowels. I don't recommend you suddenly start taking huge doses of loperamide but I am an example that under supervision you can take much larger doses of loperamide to manage your bowels effectively. :ysmile:

 

[Mountaingem]

Yeah, that's why I'm too scared to take Immodium, I have the same problem. Sorry I don't have any answers though, sending hugs! :hug: