Urgency issues - how much Imodium?

Hello all!

I´m so glad to have found this. I feel so alone with my UC (probably because I don't like talking about it..). It's good to know someone out there understands and knows the pain.

Anyway, I'm 29, female, diagnosed with pancolitis about 10 years ago. Have had 2-3 flares a year since then, been to the hospital once for 3 days. I am a lawyer and pretty successful. I hide my disease because I'm a very private person (and of all the diseases you can have, it ranks pretty high on the "gross" scale), although I have had to leave important meetings, and duck into restaurants and gas stations at inopportune moments. I usually just say I have a small bladder and leave it at that, although obviously, my family knows.

I have tried several different medications, but after a horrible flair earlier this year, I'm tapering off Prednisone, and taking Imuran and Lialda. My doctor also prescibed Colestipol, hoping that it might lessen the D. At this point, I would practically kill to have constipation, I am so tired of the urgency!

And tomorrow I'll be leaving for a long-awaited break, going to sunnier climates for golf and fun for a few days. However, since my urgency is really bad, I'm worried that I won't be able to take part in the fun and will be stuck somewhere near a toilet. I have never taken more than 2 Imodium, and it has absolutely no effect on me right now. I see some of you are taking 8 or 12 before going to work, so my question is, how do you know how much you need? I'm afraid of causing damage, of becoming dependent, or worst of all, of becoming immune to Imodium - I couldn't live without it!




p.s. Thank you to all the Mods for your help and everyone for sharing their stories!

Most times with urgency, most of the inflammation is near the rectum/sigmoid area. Once you get that under control then the urgency becomes less. Do you have any bleeding with the urgency? I found that rectal meds help tremendously to slow down urgency while in a flare. I can not tolerate mesalamines so I use steroid enemas. It works fairly fast. Also, I take an anti-spasmodic called Bentyl. It slows down the bowel a bit which can take the edge off.

Do you find that the urgency hits after you have eaten? Perhaps, you can try a light diet for a few days to avoid the urgency while on the greens.

Personally, I hate Immodium. It just makes me feel yucky. But my GI has okay'd me to use one a day. But Callalily is right, each doc has different preference on Immodium. My previous GI absolutely refused to let me even try Immodium.

Personally I experimented a bit with it to find what seemed to work best for me which is 4 caplets, double the normal dose. I originally started off on less than normal doses as some people around here apparently get by on as little as half of one every morning. Personally, half, one, and even two had absolutely zero noticeable benefits to me. 4 on the other hand not only works wonders, but somehow it seems to keep going strong for about a week most of the time! I've recently also started taking Rowasa enemas which seem to help stabilize things even more - definitely try those out if you haven't already. Anyway, my advice would be to try incrementing by half of a cap each time you try to see what works. I'm certainly not qualified to speak on how much is too much though none of my doctors seem to have a problem with my current dose... likely because of how infrequently I take it and the fact that it never really totally stops me up for long.

To describe a bit more on how it works for me: I usually take a dose when things start feeling "normal" again ("normal" because I've been suffering with these same symptoms nonstop for a few years now) which is to say very frequent bouts of urgency and an overall "sick gut" feeling that is difficult to describe, usually with increased mucus and generally abnormal BMs. Sometimes I'll take them sooner if I'm traveling or otherwise doing something where I cannot deal with the urgency or absolutely cannot risk an accident. Anyway, I take them and it takes up to 2 hours to really kick in but then the rest of that day I'm 100% fine. My gut feels great, no urges, etc. Day 2, I usually still feel fine though I may have to go a few times. I usually get some intense feeling *but easy enough to deal with* gas on the second day for whatever reason. Day 3 and onward I usually still feel "decent" and while I might have BMs and even an occasional more urgent feeling, it is NOTHING compared to the feelings and the urgency and sickness that I'd normally have. I usually ride that out (as it is plenty manageable) until things again return to "normal" which is usually pretty obvious and jarring. I've been doing this for something like 9 months now with great success. Before I started doing this even going to and from my job (a 35 minute commute) had me stressed out and paying more attention to where the next easily accessible bathroom was more than my driving.

runawaybride3 said...
Some great tips here, thanks all!

Good to know about Sams's Club/Costco - I just bought 24 Imodium for about $6, so those savings are really good. (Actually, I bought a no-name brand, they work just as well, right?)

I should probably get some kind of anti-spasmodic or enemas. I tried an anti-spasmodic once and it didn't have any effect, but who knows, it might now. I also have some leftover Pentasa suppositories from a couple of years back that might work. They seemed to at the time (albeit intermittently). It's just that I thought I would be better by now, so it's too late to book an appointment with my doctor. But longer-term, you're absolutely right, I shouldn't use Imodium so much.

My main problems are these:

1) I'm worst when I wake up. I have to get up 3 hours before going anywhere, so I can get my 5-8 BMs over with and wait for the Imodium to kick in. For the rest of the day, I'm relatively fine, except..

2) When I am in transit (driving to and from work, school, the grocery store) I get so anxious that I will suddenly have to go to the bathroom, it's constant agony. And of course, my stress makes my symptoms worse, so I do get the urge to go, and have to stop somewhere along the way and use the restroom. It's a vicious cycle. Perhaps I need to ask my doctor for anti-anxiety pills too.

So I'll try 4 Imodiums and see how that works out. My fear is that my sickness will hamper my family's fun this weekend, I'm not so worried about myself camping out in a public restroom (it's AMAZING what you can get used to :).

The no-name brands work just as well. A lawyer huh..... Ill save my lawyer jokes for another thead. lol

I've used Immodium with very good success ... Both when flaring and when not. I take up to 8 a day (two ...4-times daily). It does take a while to kick in and I can understand and have experinced the three hours of waiting for it to work. Most people don't know that Immodium is actually classified as an opiate. It just has a minor change in the chemical structure so you don't get the opiate effects ... but for me the absolute best anti-diarrheal is Tylenol-3. There are specific receptors in the colon that respond to opiates and codeine is the one they respond to best. Some people can't tolerate codeine. For me it works wonders. I've had flareups start and look to be nasty, started the T-3 and by the next day everything was back to normal with no other medication. Now, that being said, I am a firm believer in the use and effectiveness of rectal and oral meds. The T-3 also works well with helping take the edge off the pain and I personally don't seem to have the withdrawl problems from it that can be associated with other types of narcotics, such as vicodin, which many people with UC are prescribed.

Hello & Welcome -

I have never tried Immodium although many times I have thought about it because I've been in your shoes and I know how difficult it is... My GI did say that I could try immodium last time I was flaring. She said it may slow things down and that was exactly what I needed but I started 6mp and I was on prednisone at the time and things calmed so I didn't need to go the Immoduim route.

I agree with Red on the rectals. You should give the pentasa suppositories a try but if they are old, they may be ineffective? Also, remember that suppositories treat the smallest area because they can only reach the rectum. An enema can treat amuch larger area. Do you have a GI you can have call in a script for you? If you don't see results from the mesalamine enema, there is also a steroid foam enema that may help you more. of course it's best to reserve any steroid medications for when they are necessary because we can form dependence on them.

what dose of immuran are you taking? have you had the levels checked regularly? Are you in the theraputic range?