Imodium, Dairy, and Taste Changes Post-Ileostomy Reversal

Hello: Had my ileostomy reversal in September. They removed about 32 cm of colon including rectum. Doing well in general. However, I take 7 tablets of Imodium a day and 1 tsp of Metamucil to deal with initial diarrhea and loose stool. I've been told by my surgeon's office that there isn't a problem in taking the Imodium indefinitely at that dosage. (The package for the pills says otherwise.) It's only been a couple of months but I can't seem to get any advice about how long I'll need to take the Imodium----or how long I'll be reliant on it.

I don't have any imposed restrictions now on diet. I am allowed anything. But I tried dairy recently and it went right through me. Ice cream I believe. I was on the toilet back and forth for several hours. So my surgeon's PA told me to forego any dairy "for the time being." I can't seem to get an answer on how long it "the time being"? Meaning, will I ever be able to enjoy cheese or ice cream or milk again? Before my diagnosis, I enjoyed all those things a lot.

Lastly, I do notice that I'm not really enjoying the taste of food so much. I have a definite apetite, meaning, I want desperately to eat and enjoy food, but it just seems really bland and not interesting. I used to really, really enjoy cooking and planning meals and savoring dishes. What's going on? I wish my surgeon's office were more forthcoming with information.

Anyway, I thought I'd give this a try---to see if any of you who have been so helpful in answering my questions during my initial diagnosis and temporary ileostomy. I thank you so much for that.

What Imodium dosing says on the package isn’t relevant to us without a colon/depending how much you have left. There’s a lot of people that take way more than you do per day (at dr’s instruction)  and they do fine. 

Remind me, are you working with a big health system like UPMC, Penn State?

A lot of people become lactose intolerant to some degree after age 30. Were you having issues before?  For me if I’m having GI issues, my GI Dr’s first question is how much sugar did I eat.  My main source of protein is dairy… I’m not a great meat eater but wouldn’t call myself a vegetarian. 

From what I’ve read, it seems like a lot of people that struggle may be in that period for a year or two (this is me noticing patterns in different support groups and case studies, so I can’t cite one specific source for you). My colorectal surgeon hasn’t been surprised by any of my food issues… the goal for my team and me the past year has been to get me to eat. My favorite drink is club soda with lime- didn’t like club soda at all before. It has so much sodium in it and my body really needs that. I was telling my surgeon one day I was craving goulash and she said that was my brain’s way of telling me what my body needed. Mainstream medicine is finally recognizing the brain-gut connection. 

I have a really hard time cooking now especially if it’s meat or something with a strong smell. I have to leave the kitchen get some fresh air then come back to what I was doing and repeat as often as needed.  I always liked baking more than cooking so I’m trying to get back into that a little more.

Sometimes our minds/bodies just need time, sometimes a bit more. 

I have an ileostomy the  last operation was in 2006 for most of the time since I have been taking loperamide 2 mg tablets before every meal or snack, probably averaging 10 tablets a day. I did meet another person who said that they averaged 16 tablets a day, neither of us thought that we had any adverse reactions to the loperamide. My stoma nurses also said that although these doses are officially an overdose in the UK they confirmed that it was ok and one sent an email to my doctor stating this because the doctor queried the amounts on my prescription request. As for different types of food, we are all different, anything new try in small amounts you will soon know what is ok for you. Best of luck. Elwick

Anosmia (loss of smell) and ageusia (loss of taste) is probably something your surgeon is not knowledgeable about.  Assuming you have not had COVID it is possible that things will improve gradually in a few months.  A lot of people who lost the sense of smell compensate by eating spicy foods. Below is an article from the National Library of Medicine that discusses this problem following surgery.   

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4286802/  

Almond milk is an alternative to regular milk it has no lactose and more calcium in some brands than milk .  

My sense of smell and taste always alter after anesthesia and particularly if I'm given strong pain meds post-op. It takes a few months to settle down.

I was told up to 32 loperamide a day is safe although I never took more than 8 in 24 hours. I stopped needing them a few years after my surgery but I still always carry them and take the odd one if I'm traveling or if I find there are no wheelchair accessible toilets.

I am not dairy intolerant and cheese forms a major part of my diet. However, I cannot eat ice cream unless I am very near a bathroom. If I meet a friend for coffee I take it black for the same reason. Lattes are to be enjoyed at home only!

 

Living with Your Ostomy | Hollister

Very good article you suggested, John. I read it. I printed some paragraphs. Quite compelling, and it helps me understand how anesthetic and other drugs play a role in the loss of taste. I appreciated the article lookup as I am suffering from it and wrote a thread on it. Thanks for the post. My summary in my own thread will be of interest to readers. I am hoping ageusia is a passing thing not associated with IBD. - Warrior