immodium ? please

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vivian
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immodium ? please

Post by vivian »

Is it possible that immodium will stop working? The end of March I apparently did something that set off very watery D. I have been taking 6 immodium a day and know that I could take as many as 8, but so far I just have water. It doesn't seem like it took that long the last time before I at least got pudding type D. At least it doesn't seem to be uncontrollable (knock on wood). I usually have a little notice and time to get to the bathroom. I might just be too anxious but I have to fight the feeling that I should just stop eating. I am now low on Potassium and am having to take 20 mls. of liquid potassium a day and hope to get it back under control. I have heart palpatations so I know I am still low and will have another blood test in a week. I have read here that stress is a big factor and I am definitely under a lot of stress right now. But I was told that I might have to rely on immodium for many months. Is that correct? Thanks to anyone who uses immodium and can tell me how it reacts for them. Vivian
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tex
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Post by tex »

Hi Vivian,

I doubt that it loses effectiveness, but Imodium is merely an anti-diarrheal — it slows down motility. You need to try to suppress the inflammation that's causing your diarrhea. 6–8 Pepto-Bismol tablets per day (or the liquid equivalent) for 8 weeks will bring remission for most people. Or budesonide works pretty well for most people. You have to follow the diet though, or you will relapse when the treatment ends.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
vivian
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Immodium

Post by vivian »

Thanks for the reply. Unfortunately I can't take pepto. I have had horrid reactions to it and the D was so bad after taking 2 tablets that I went 14 times in 5 hours. Is the other drug you mention one that you get from your doctor? I know most people keep referring to it, but I am not familiar with it. Is it a steroid? Vivian
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tex
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Post by tex »

Yes, it's a corticosteroid, and it's available by prescription only, but it has far less side effects than other steroids because it's encapsulated so that it does not become effective until it reaches the terminal ileum and the colon. It mostly dissolves in the colon so that only up to about 18 % can be absorbed into the bloodstream, whereas the other corticosteroids can have unlimited absorption rates. It doesn't work for everyone, but most MC patients have good luck with it.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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GrammyLou
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Post by GrammyLou »

Hi Vivian,

It is interesting that you said you react to Pepto Bismol. I have been reading recently that some people can have salicylate sensitivity (Pepto is bismuth subsalicylate). I wonder if that is part of your issues? The list of foods, lotions, etc that contain salicylates is sadly long...

I wonder if Tex has any input regarding this?
~Louise
Lymphocytic Colitis diagnosed May 2017

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tex
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Post by tex »

Yes, you are correct of course. This is part of the NSAID problem (related to salicylic acid and it's derivatives). Usually, just avoiding the major offenders is sufficient, but some individuals are much more sensitive and they have to avoid most of the other sources also. This includes anti-inflammatory medications based on mesalamine such as Asacol, Pentasa, Colosal, Lialda, Apriso, etc.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
vivian
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Post by vivian »

Sorry it took so long to respond. I have been in the hospital again with my potassium at about 2.5. and palpatations. I will look into salicylates and what foods contain them. Perhaps that is part of my problem. Nothing is working at the moment and I don't go back to the doctor til next week. I have been trying to get my doctor to tell my how much liquid potassium I can take at home when I know my levels are dropping. So far he hasn't given me an answer. Going to the hospital is getting very old. I take 22.5 mils twice a day and if the D gets out of hand (which it is at the moment) it doesn't take long for my levels to really tank. I will also discuss budesonide with him next week. Thanks for the info. Vivian
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Erica P-G
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Post by Erica P-G »

Gee Vivian,

If you are low in Potassium and having palpitations then you are VERY LOW MAGNESIUM :shock:

If you can't handle internal magnesium due to diarrhea then you need gobs of external magnesium in the way of Epsom salt baths or Epsom salt foot soaks, Magnesium lotions, and/or oil sprays. Plus I can imagine your VitD3 levels are not helping you either....which you'll want to get these two foundation supplements working together in your favor as soon as possible. You will start seeing results quite quickly if you do :wink:

Take care!
Erica
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Post by Forgiven1 »

Hi, I am new....my first ever post on ANY online forum! But I have been using this one for months and you all have been so helpful to me.
Above someone mentioned taking imodium for many months. I am wondering what is typical for imodium use. It is what I am currently using (8/day) and I am hoping it starts working so I don't have to go back to budesonide BUT how will I stop the imodium? Do I just go on using it forever? Do I chance it and just start tapering it and hope my D won't come back? Is there a general timeframe most people use imodium?

My back story....MC started in August of 17 and I was finally diagnosed in October. Put on Budesonide which helped for the MC but I had horrid issues with low cortisol when I tapered off of it (My body had a hard time producing cortisol again after the steroid was removed). So I had to use predisone too....it took months and it was awful. Any loud noise and my heart would pound for 20 minutes because of the low cortisol...and I have 2 toddlers so loud noises are constant!

I have been mostly GF for quite a few years but cut it out completely along with dairy and most caffeine and refined sugar. Might cut out eggs too. I think my primary trigger though is stress. Harder to "eliminate" that! I was doing pretty good and we were looking to start trying for baby #3 when BAM it flared up again. Not knowing if were were pregnant or not my GI started me on Pepto. Didn't help a bit. Next was imodium. It helps somewhat...but now he and my reg Dr. want me to go back on budesonide. It is SO expensive too!!!! It will cost us $800/month! Yikes!

So here I am, praying this imodium will do the trick so I don't have to use the budesonide and full of questions about that and when I'll ever be healthy enough to try get pregnant again.

I also OAT axis issues. I have hypothyroidism (not hashimotos) and very low progesterone and have struggled with endometriosis.
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tex
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Post by tex »

Hi,

Welcome to the forum. I wonder if your diet might be the problem. With MC, "mostly GF" just makes symptoms worse. I know you feel that you are GF now, but I wonder if you realize exactly what is required in order to be totally GF. It you use any commercially-processed foods, you have to be very careful that no traces of gluten in any ingredients are present. It's usually necessary to do your own cooking from scratch, using only whole, safe, foods. If there is any flour in your kitchen, trust me, it will contaminate your food, no matter how careful you might be. The same care must be taken to avoid soy and dairy ingredients or cross-contamination.

That said, if you feel that you need to take budesonide, I can tell you where you can buy a 3-month supply (90 capsules) for $53.63, plus shipping, if you don't mind ordering from an Indian pharmacy. Members who use this product say it is equivalent to domestically-sold budesonide. Big Pharma (and the insurance companies) are ripping off Americans big time, with the blessing of the U. S. government, because they also buy most of their generics from Indian sources. Just ask, or PM me if you want the information. You can order without a prescription, if necessary, because prescriptions are not valid across international borders, anyway.

MC'ers are over 7 times as likely as someone in the general population to have thyroid issues.

Again, welcome aboard,and please feel free to ask anything.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Forgiven1 »

Thanks Tex,

I do think I am doing whatever possible to be GF now...I cook everything from scratch and our family is just entirely GF now. I might take you up on that contact for budesonide. $800 is ridiculous. That is almost a house payment around here!

My real question though is about the imodium. How long do people take it? Indefinitely? For 2-3 months? Is it just guesswork?

~Ruth
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tex
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Post by tex »

Ruth,

Sorry, I forgot to address the Imodium issue (I'm gettin' old and forgetful, unfortunately — sometimes you have to hit me up aside the head with a 2 x 4 to get my attention. :lol: ). As far as I am aware, many of the members here take it indefinitely, if needed. Many don't need it, so they never take it, but for those who need the extra insurance, it's always an option. I don't know of anyone who takes it every day, though, especially at that high a rate. That said, I see no medical reason why you shouldn't be able to safely use it every day at that rate if you need it. Doing that is much better for your body than allowing uncontrollable diarrhea every day. It should significantly improve your nutrient absorption rate also, and help prevent malnutrition because of the malabsorption problem associated with active MC. As far as I know, it is one of the safest medications available, with no significant side effects.

It's always best not to take any more of any medication than necessary to do the job. With that in mind, it should be perfectly safe to try reducing the Imodium to see if it will matter. You might be perfectly fine without it. There's no medical reason why you can't even stop taking it cold turkey, if you want. But if it were me, I would just try reducing the dose 1 pill every day until I either realized that I don't need it, or I've gone too far with the reduction and I need to back up.

It sounds as though you are doing everything right on the diet. You might just need more time for the diet to show results. It sometimes takes several months on the diet to see improvements. You can't count the time that you were not completely GF, because if we get even a trace of gluten, our immune system will continue to produce antibodies at a full rate as if we were pigging out on gluten.

I hope this helps.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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