IMO and Loperamide. Advice please

[skylark15]

I am 74 and have an extremely sluggish bowel, as well as a lifelong very sweet tooth.

I've recently been definitively diagnosed specifically with IMO. I'm struggling and am heading pretty inexorably towards an ileostomy. to be situated right at the ileocaecal junction.

With an ileostomy I understand that I would still need to empty out the remaining large bowel, which depresses me, as owing to Muscular Dystrophy, I have little or no pelvic floor muscle tone.

For months now, there is a no urge or any activity for 3-5 days, and the waste ends up as BSC 1 (Bristol Stool Chart), and that is manageable without irrigation, which for me has been ineffective.

If, however, the current pattern of that single episode of Type 1/2 proceeding to turn into frequent, unconscious passage of fairly copious volumes of almost liquid "slurry" (sorry for graphic detail), I find that extremely difficult to manage.

It doesn't seem to fit the picture of: "... constipation followed by 'overflow incontinence'.either. I'd welcome comments on that, please.

And if/when I end up with an ileostomy, I'm very worried about the suddenness and consistency of the stoma discharge., which will be virtually liquid, I cannot move quickly enough to get to a toilet in time to avoid accidents.

Does anyone take high doses of Loperamide regularly to firm up the stoma output? I'd love to hear of people's experience with this. Thank you.

[MyStar86]

please try not to worry about having an ileostomy it saved my life and I love it. Stoma output should not be like water it should of semi thick like porridge and people maximum empty the bag 4 times a day which is a very simple process just like going for a wee you open the bag empty it then wipe the end of the bag clean and you are done, you could even get a pot and empty it into that if you can’t make it to the toilet. You shouldn’t need to take anything to slow it down having food itself slows it down and gives you just a steady slow output but you are never emptying it constantly. If you do have any questions about having a stoma I’m always happy to help as I wouldn’t be without mine.

I also had bowel prep to clear out the colon before I had my first loop ileostomy surgery but later went on to have my colon removed anyway xx

[skylark15 in reply to MyStar86]

Thanks so much for your encouraging reply. It is so reassuring to hear what you say about your lived experience. It sounds as if you've had a really tough time with bowel issues, which must mean ongoing challenges with nutrition, yet you still find time to write a lovely response to me when I've been soooo in denial and desperate to find any alternative to an ileostomy, for years now. You really are a star ⭐!

Xx

[MyStar86 in reply to skylark15]

Oh bless you that’s very kind of you but I’m always here if you have any questions or just want someone to talk to. I’ve just gotten home yesterday from more surgery so I’m going through it at the moment but I wouldn’t be without my ileostomy it’s been a life changer for me. I battled for nearly 10 years with my bowels but once I got my ileostomy it made everything better and easier so try not to see the negatives as I promise there is a lot of positives. I have nutritional shakes on prescription to help on that side of things which I’ve found really helpful so the help is out there just try to look for the good not the bad as you are clearly not happy now and from my experience an ileostomy could change your life for the better I know it’s scary but I’ll always be here if you need me xx

[skylark15]

Thank you again, MyStar. It does sometimes seem as if I can only focus on the bad stuff in my life, and you're helping me to try and re-set that. And I am certainly feeling less apprehensive, even getting towards optimistic, about actually having an ileostomy and learning how to manage it. Absolutely anything would be better than continuing with the current situation.

Sending you gentle hugs whilst you recover from another operation.

Xx