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imodium - why is it bad for some UCers?

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Posted 7/12/2015 4:40 PM (GMT 0)
My Gi has told me never ever to take imodium and he has been rather adamant about it.

Last night a friend (without a car) was in town from across the country and I REALLY wanted to see her. So I took imodium for the first time because A. I was not in pain and B. I just needed enough time to get into the city without making a bm.

well it worked and then 3 hours later I was in the worse pain in my life. This morning blood started again in a torrent and I feel like I am trying to push a bowling ball out but only liquid D is flowing around that ball. The cramping is unbelievable. Worst I have ever felt.

I don't understand why some people swear by imodium? I certainly won't take it again but I am confused as to why it works for some people? I just assumed my GI was telling me not to take it for fear of toxic megacolon (rare?). Is there a certain type of colitis that prevents you from taking imodium? Is it that you can take it but just not during a more severe flare?
Posted 7/12/2015 5:09 PM (GMT 0)
i think immodium masks the symptoms rather than treating it, not sure 100% of why but i think thats part of it.
Posted 7/12/2015 5:26 PM (GMT 0)
Hi! I take immodium and it helps me. I usually have the worst symptoms within the first hour of getting up each morning. I am in the bathroom 5x. Then I take 2 immodiums and it holds me so I can work all day. I work in the community where I might not have bathroom access for 20-30 minutes at times. I have no ill effects. Perhaps my disease is mild? My new GI said it is ok to take if I limit it to 2 a day. When I don't take it, then I am in the restroom several more times and I never know when the urge will strike. I think we are all different. In the same way some foods are well tolerated by some and just awful for others. I wouldn't be able to even drive to work without immodium. Hopefully, when things get better I won't need it. The risk is it can block you up and cause major problems like toxic mega colon. Talk to your GI about other options. Sounds like it's not good for u. Hope u feel better soon.
Posted 7/12/2015 6:23 PM (GMT 0)
My GI's have always said take it if needed and I have used it from time to time with no problems. The next day I'm back to "UC normal". For me the effects don't last longer than 1 day but I've never taken Immodium day after day in order to function. I carry it in my purse but rarely use it, probably a mental crutch haha.

Long term I've heard it can screw your normal colon rhythms up but never saw a study confirming that.
Posted 7/12/2015 6:54 PM (GMT 0)
A few years ago, I had the same results when I took Imodium. Made me much worse, no idea why. But I've recently started taking it again and it helps a lot. I only take it a couple times a week when I feel I really need it though. My flare is a little more manageable right now though (no pain or blood), I would assume that's why it doesn't effect me negatively.
Posted 7/12/2015 6:59 PM (GMT 0)
My GI said I can take it but she also said it can cause a major explosion afterwards. I already have explosions but she made it sound like this could be a worse explosion and that scares me. I think the biggest reason is the risk of toxic megacolon.
Posted 7/12/2015 7:39 PM (GMT 0)
Sounds like everyone's reaction is a crap shoot (sorry bad pun.) Maybe I took too much? The bottle said to take two so I did.

I may try it again when I am feeling better. I know it just masks symptoms but just the thought of being able to take a magical pill that lets you leave the house sounds well...magical.

I was really hoping to join this imodium club :)
Posted 7/12/2015 8:12 PM (GMT 0)
My understanding is the risk involves not expelling infection, or long term use leading to toxic megacolon.

If it goes as far as to produce minor constipation, this seems logical it could cause cramps, and for some UCers that is very painful.

I think occasional use is OK with most GI. I know my GI where I used to lice was OK with me taking 1/2 tab to prevent accidents at work. BUT - I never had any kind of constipation.

You could try again at a lower dose, but if you happen to be sensitive, you could end up in pain again.

In any event, you are entitled to know why your GI never recommends use, and possibly entitled to know his/her opinion of some GI who are OK with occasional use for some patients. After all, you are paying. So ask.
Posted 7/13/2015 4:07 AM (GMT 0)
I don't think UCers should take it regularly, and definitely not during a full-blown flare. But, once in a great while probably wouldn't cause harm if at a very low dose.

1/2 a tablet used to be enough for me to see results. Next time try 1/2 a pill and see if you get better results.
Posted 7/13/2015 12:01 PM (GMT 0)
immodil. Did nothing for me my GI Doc put me on Lomotil it works fine ad I only have to take 1 pill With the Immodium I was taking up t 6 and still had accidents turn
Posted 7/13/2015 1:27 PM (GMT 0)
So I am assuming Lomotil is the prescription version of imodium? I will ask my GI about it but I am guessing if he said no to imodium then anything stronger is going to be a definite no.

I just want to be able to leave the house once in a while. I wouldn't abuse it. I can take the pain and cramps (except when they cause vomiting) but the accidents are so embarrassing. Thank god I work out of my house. I really feel for you people that have to go to an office.
Posted 7/13/2015 1:41 PM (GMT 0)
I think the main worry is that if you are using it as a treatment it can give you false assurances while your inflammation gets worse. It does virtually nothing to heal UC but if you think it is helping because your symptoms are better then you don't realize that whatever your treatment plan is, it is not working as well as it should and you are actually getting worse instead of better, you just don't realize it, and that is a bad thing. If your treatment plan was making your UC better then you should reach a point where these drugs are not necessary at all because you really would be better and not need them anymore.
Posted 7/13/2015 2:12 PM (GMT 0)
garylouisville - I think you just gave me the exact reasoning I know my GI is going to give me :)

No, I get it. Masking symptoms could be dangerous. And I know I have to keep my focus on the goal - remission.

I still wish there was some sort of band aide to give a temporary reprieve. Or at least something to slow down the blood loss. I am constantly dizzy now from all the blood loss.
Posted 7/13/2015 2:23 PM (GMT 0)
Maybe stop eating solid foods for a day or two to reduce the amount of stools which will reduce BMs which maube will reduce blood loss
Posted 7/13/2015 2:59 PM (GMT 0)
yes I have fasted in the past and it has really helped. But I tried recently and the bms didn't reduce. It just felt like I had a bm but had nothing to pass but blood. To be fair, I only fasted for a day so maybe I need to give it my usual 3 days.
Posted 7/13/2015 3:29 PM (GMT 0)
Be careful cuz you don't want to kill your appetite
Maybe eat clear liquids too
When I was in the hospital they put me on npo and by the time they let me eat I didn't want to eat and I went three weeks without putting a stitch of food in my mouth
I was drinking water tho
Posted 7/13/2015 4:24 PM (GMT 0)
I think the prob with immodium too is that it keeps stool in the bowel stuck over spots of inflammation. The longer those patches get exposed to the stool for some us, the more the body goes into attack against the stool, raising inflammation quickly.

I have come across people on forums who had self treated UC with immodium before realising what they had and ended up with toxic megacolon and emergency colectomy so I guess any GI who has come across that is going to be very anti
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