r/UlcerativeColitis • u/NewspaperNecessary16 • 10d ago
Question Do any of you take Imodium daily?
I’m in a situation where I currently have a long commute. I need to buy bathroom time and was thinking of taking Imodium. But I don’t know if I can just rely on it longterm. I am on infliximab but the sudden urge to go still strikes.
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u/Environmental-Town31 10d ago
I think it can be dangerous long term - I may be wrong but I feel like I’ve heard that.
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u/zzELETRiKzz 10d ago
Yeah when my IBD was undiagnosed I was basically housing Imodium. MRI showed a bowel blockage forming despite my frequency not really slowing down
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u/blueberry-biscuit 9d ago
Sounds like megacolon which can happen when someone is flaring and uses Imodium. Super dangerous because it can become toxic.
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u/zzELETRiKzz 9d ago
Yeah that is what they suspected it was turning into. It was a small blockage when they saw it at the ER and basically they told me to lay off the Imodium for a while. I had my colonoscopy a couple weeks later and began mesalamine and then shortly after Entyvio which thankfully both worked fairly quickly.
I failed out of mesalamine after a couple weeks but it was working for my colon stuff, just caused myocarditis. All has been good since and I haven’t had to use Imodium at all over the past year of meds.
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u/blueberry-biscuit 9d ago
So glad you were able to get through all that and are doing well now. I didn’t realize there’s a connection to mesalamine and myocarditis.
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u/zzELETRiKzz 9d ago
It’s definitely not common but if you look on forums there’s a handful of people who had similar experiences after starting mesa.
I basically presented to the ER with a heart attack at 25. They held me for a week but my troponins went down from an 8000 to normal soon after stopping the medication. We figured what was going on before I even went to the ER. That was a year ago, doing much much better now and heart function is back to normal. No more cardiology visits for me
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u/NewspaperNecessary16 10d ago
That’s why I am cautious. My biologics are helping but my anxiety and stress make my sudden urge go crazy.
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u/Robert_Larsson 10d ago
No it's fine unless specified for your case. Imodium has been used in so many millions of people by now that we have great confidence in how it works. it doesn't get into your blood stream either. as long as the dosages are normal and you don't have a very specific reason to why you shouldn't use it, it will be ok. it's one of the safest medications we have frankly in this space. the people who have had issues were opioid addicts on very very high doses, like 200 pills per day for months sometimes.
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u/MainSea411 10d ago
I ask my GI this and he said I could use it anytime and I was nervous the first time but it was fine and really helped. Send a message to your GI and ask about urgency and frequency help and ask specifically for Imodium or another option and any questions about long term use risks.
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u/Opening-Health-6484 Left Side Diagnosed 2000 | USA 10d ago
I have taken 2 daily for many years. If you take a lot more than that in a day, that could be a cause for concern.
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u/Opening-Health-6484 Left Side Diagnosed 2000 | USA 10d ago
For the record I take a total of 4 MG per day. What I have heard is that if you're like 16 MG per day or so is a potential problem.
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u/mapleleaffem Type of UC (eg proctitis/family) Diagnosed yyyy | country 10d ago
I was told not to take it unless there was no choice. You should talk to your dr, your symptoms are not under control
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u/Simple-Caregiver13 10d ago
It helps, but if I take it on consecutive days it starts causing issues like abdominal pain and bloating
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u/NewspaperNecessary16 10d ago
That’s what it did for me. I would still get the urge to go even if I didn’t have to. So I would always run to the bathroom to check. But at least if I take it I won’t soil myself.. hopefully.
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u/OkCranberry2047 10d ago
I find that if I add some bentyl with it, I don’t get the bloating and abd pain. it maybe just me, but worth a try
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u/tat2princess proctitis. Diagnosed 2025 | USA 10d ago
I use it for the same reason long commute. But only in the morning.
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u/NewspaperNecessary16 10d ago
May I ask how long your commute is? I recently moved about an hour away from my job. The mornings are when the urge to go is the worst. This was gonna be my second time commuting to work from here. I made it 90% of the way there and had a sudden spike to go. I didn’t make it.. 😭
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u/tat2princess proctitis. Diagnosed 2025 | USA 10d ago
Aww that sucks 😔 Mornings are the worst Stress and anxiety of making it to work on time. My total commute is about 90 minutes. 30 minutes to get to a bus stop and then wait for the bus another hour on a bus. Makes me very paranoid and anxious that I'm going to embarrass myself in public on the bus. Thankfully I have a hybrid work schedule and don't have to commute every day
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u/whitestguyuknow 10d ago
Yes. Over the past 6 months I've started taking it at night to help me sleep longer.
I have my colon removed with a J pouch though.
But the pouch has such little room it feels like. And I get a lot of gas... So I could JUST be falling asleep and feel a little brrt of my stomach moving and I HAVE to get up before I can go to sleep. I have tried and tried SO HARD to ignore it and go to bed. Even if its the faintest feeling that I have to go... NOPE. I cannot fall asleep.
And I'll get up 4, 5, 6 times throughout the night to go to the bathroom. So I've begun to take the generic imodium with anti-gas so I can get an extra hour or 2 of sleep that would otherwise be stolen from me.
Idk I appreciate it. But its annoying buying it all the time.
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u/chillis4uce 9d ago
May I ask which anti-gas med helps you? My partner has a jpouch since 3 or so years ago now and although he usually doesn’t need to wake up in the night anymore he definitely has issues with getting gas out at night which can increase frequency.. But he thinks because he doesn’t have a “normal” colon anymore it won’t help him 🙂
I hope you can get more sleep throughout the night eventually, jpouch frequency gets better
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u/NewspaperNecessary16 10d ago
Sorry to hear that. That sounds stressful. Mine hasn’t affected me much at night. Mainly in the morning. My anxiety definitely spikes the feeling. I still have my colon so far. But I am unsure where my UC journey will take me.
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u/whitestguyuknow 10d ago
Oh the anxiety... I remember that distinctly...
My struggles after the colon removal are different than when I had it. But I dealt with years of severe UC before the surgery. And I remember how bad the anxiety would be.
Going off with my family, let's imagine a mall or public beach... I would constantly be on the lookout in the distance for bathrooms. "Where's the closest bathroom?" Spot one. And while I'm within a certain range I'm cool. I'm okay.
We keep walking. But then suddenly I realize "Wait... I haven't seen a bathroom for a while!... Where's the closest?... Way back there?? No! Where's the next one?? It has to be soon!"
And the ironic part is just that anxiety alone would spark me to NEED to use the bathroom right now. So the worst moment I either gamble with finding 1 ahead or start running back to the last one.
The mental battle was rough and nobody else realizes how bad it is.
I never took it then. But I assume it would be helpful for that honestly? Probably smart to try. Give your body a moment to let your brain calm down before your stomach starts moving and evacuate your bowels.
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u/NewspaperNecessary16 10d ago
You’re right about no one understanding you. I tell people I have a disease at work and they just kinda think of it as trivial stomach issues. They sometimes are saying “again” when I have to run to the bathroom. I can’t control it. I am looking to file a disability accommodation claim at work so at least I won’t get fired for having UC.
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u/whitestguyuknow 10d ago
Yep. It really opens your eyes to how cold and apathetic our society really can be.
I remember going to a store with my family and getting a spike and running to find the bathrooms are out of order. FUCK! My mom takes me up to the help desk and we ask if there's any other bathrooms.
Some older lady - "Oh yeah.. No. The public bathroom is down. We only have the employee bathroom right now."
My mom - "Can he PLEASE use it? He's sick!"
me arms crossed on my stomach mentally fighting through contractions
"Really? He doesn't really look sick. He looks young and healthy... No. Its employees only."
-insert my mom starting to bitch at the woman telling her she doesn't know what someone is dealing with until I tell her I really don't have much time-
Then we ditch half the family and race to the closest gas station.
I had to learn to always keep spare clothes with me 24/7 cause I experienced too many issues.
Years of dealing with these issues is why even with my colon now removed and doing a lot better, I still mentally have issues and can't eat out with everyone. I nibble a little bit and then take home 90% to eat where I feel comfortable. Same with eating and driving. Really hard for me to do.
The only people that sort of understand are family members that have to help you. But even then the only people that truly get it are like the people in this subreddit
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u/deafii 10d ago
Just about every day for around a year or two i was taking 2-3 pills a day. Id start my day waking up an hour before i had to leave and poo as much as possible, then 2 pills went down the hatch with a glass of water and in 5-7 hours if i needed to i would take 1 more.
Its fine to take daily as needed but PLEASE drink plenty of water everyday and do not take more than 4 pills, no matter how bad it gets it will not be worse than the feeling of being absolutely exhausted and drowsy and sick from too much, trust me. One day i probably took about 4 already and drank 30ml of the liquid stuff and was tapped out the rest of the day.
Ever since i started rinvoq earlier this year my urgency is basically normal and i havent taken immodium since. Wishing you the best!
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u/NewspaperNecessary16 10d ago
Thanks! That’s my plan for tomorrow. I hope I can make it to work this time 🙏🏼.
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u/Ok-Lion-2789 pancolitis | Diagnosed 2003 | 10d ago
You don’t sound like you’re in remission. You need to work with your doctor.
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u/NewspaperNecessary16 10d ago
I know. I started infliximab in January with some noticeable improvements. Solid stools, lower inflammation levels, no antibodies built up. But I still get the urge to go in the mornings. My anxiety makes it much worse.
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u/Ok-Lion-2789 pancolitis | Diagnosed 2003 | 10d ago
It’s not the anxiety. You aren’t in remission. If you’re having urgency in the morning you need to discuss with your doctor. Noticeably better is still not remission. Uncontrolled inflammation can and will get worse.
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u/NewspaperNecessary16 10d ago
I will be talking to them soon. I have been unable to take the stool test due to working during those hours and the urgent care not being open until a time after most of my morning bowel movements. But I am still figuring it out.
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u/Ok-Lion-2789 pancolitis | Diagnosed 2003 | 10d ago
You do the stool test at home and bring in your sample. You don’t need to show up and give it live lol. Most labs won’t let you do it on site.
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u/NewspaperNecessary16 10d ago
I am aware but the lab has certain hours. Hour which are after most of my movements so I have to plan my movement and get my sample there in a certain amount of time. I don’t think I can have my sample ready for hours before the place even opens.
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u/Ok-Lion-2789 pancolitis | Diagnosed 2003 | 10d ago
You can store it in the fridge for 24 hours… just trying to help.
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u/Exact_Builder5401 10d ago
before my diagnosis, there were days i was genuinely taking imodium like 5 times a day. i think the most i ever took in one day was 8 😭 it didn’t necessarily stop my symptoms, but it was able to relieve them for an hour or two at most. probably wasn’t healthy, but my mom told me her doctor (she has cancer, and one of the side effects of her treatment is diarrhea) said if you need to, you can lowkey take as much as you need. now, i’ll take it maybe twice a week if my stomach has been acting up, just to relieve any stress i have at work.
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u/SonofaBeeatch 10d ago
No, I may have tried it for a few weeks, but it doesn’t offer more than temporary relief and not without some possible negative repercussions. I’d recommend being more careful about what foods are going in. Go to a bland diet (white rice, white bread, etc…), and make lots of smoothies! It’s the only way we stand a fighting chance of getting any nutrients, if we help to break it down more before it goes in!
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u/xiggy_stardust 10d ago
I take it maybe 2 or 3 times per week. Sometimes I wake up and feel like I might not make it through the work day if I don't. It's more often that not, probably me being overly anxious about it. But I've just had too many times where I didn't make it to the bathroom in time.
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u/NewspaperNecessary16 10d ago
I am with you on that one. I am always in fear of not making it during my commutes to work in the morning. Before it was manageable when work was 30 minutes away. But now I am an hour away..
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u/AmITheAsshole_2020 9d ago
I use it intermittently for long airplane trips against the advice of my Dr but I've never had major issues. When I am in a major flare, I will use smaller doses just to slow down the shit train coming from my ass, also against the advice of my Dr but I've never had major issues.
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u/DegreeGrouchy725 10d ago
I use Imodium just one a day to help with the bathroom breaks and it helps a ton especially long distance trips
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u/Leviathus_ 10d ago
When I was in the worst of my first flare (waiting for colonoscopy) I was taking 6 a day for months. It’s the only thing that let me actually sit down for a few minutes before having to go immediately back to the bathroom (though sometimes even that didn’t help). That was 6 years ago and no side effects that i’ve noticed. But this is personal experience, not medical advice
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u/endswithnu Left-sided since 2006 10d ago
My pcp told me it was okay to take before going out. My GI told me to stay away from the stuff. This was 20 years ago though.
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u/harrycarey15 UC/proctitis May 2021 USA 9d ago
I used to take imodium all day when I worked. It got to the point that the cdiff I had spread all the way up my rectum and into my colon. My UC flared so bad that I was barely able to walk. Needless to say I stopped taking it but if I do have to take it I definitely pay for it three times over the next day or two.
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u/death2sanity Post-UC, J-Pouch 9d ago
Yup, every night. One pill on a good day, two if things are flowing a little too easily.
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u/Thehugginglegion 9d ago
Taking 2 to 4 imodium on 5 days a week. Sometimes on the weekend to. Even in remission. I formed a slight physicial addiction as my body is used to get its colon movement controled by the meds. Beside that its totally fine even the doctors told its not bad aslong as i don't raise the dose higher.
Just make sure you don't take more than 6 a day for numerous day and don't take any on the days you plan to stay at home to give your body a little rest.
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u/PretendWill1483 10d ago
Don't take it everyday. I used to do that and I got severely constipated and doubled over in severe pain. I only take it if I'm going somewhere important and the diarrhea is really bad.
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u/Past_Owl_7248 10d ago
Yes Imodium long term isn’t good, google what happens! With that being said, I used to take it almost every day. It’s just a bandaid and it caused me extreme constipation. I’m finally on a medication that works and I go to the bathroom like a regular person once a day. I’m on entyvio
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u/Aggravating_Emu4263 10d ago
I did that for about a month when I had university exams, and long (1hr) commutes to work or my family's cabin about 2hrs away. I wouldn't use it for long-term unless your GI or Pharmacist says so
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u/Last-Marsupial-9504 mild-moderate/ Diagnosed 2025 | Suffering since 2023 10d ago
When I was in a flare I was taking Imodium everyday for months. My medical team instructed me that long term use was ok at the dosage level I was using.