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Will I have to take anti-diarrheal drugs after getting an end ileostomy?

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Posted 6/2/2017 4:15 PM (GMT -5)
Hello everyone.

I have crohn's disease, and I talked to my surgeon today. It seems that getting an end ileostomy is very probable for my situtation. I'm already living with a colostomy, so I'm used to the whole thing; but something my surgeon said to me today made me worry a little.

Because my colorectal surgeon is one of the best in Europe, I generally trust his words.
He said: After getting an ileostomy, you will have to use anti diarrheal drugs (loperamide, immodium, lomotil etc...) every day for the rest of my life.
He counted three reasons for this:
To reduce dehydration
To reduce electrolyte imbalance (serum sodium/potassium levels)
And to reduce low hemoglobin risk that are associated with post ileostomy life.

I doubt every person with ileostomy use these drugs like this (every day,
and lifelong use)

What's been your experience with ileostomy in regard to this issue?
Can I live my life mostly free of anti-diarrheal drugs after a total colectomy?
I appreciate all the answers, thanks in advance.

Post Edited (xy123) : 6/2/2017 3:19:37 PM (GMT-6)

Posted 6/2/2017 7:42 PM (GMT -5)
I have had my ileostomy over a year and I do not take any antidiarrheal medications. I have all of my small intestines and I am able to control my output and hydration with diet and electrolyte water.

Do you have all of your small bowel still or have you had prior surgeries on your small bowel? My CR surgeon presented as a risk that I may need to take them. He said the majority of his patients take them for the first month or two after surgery while the body adapts but only about 20% of his patients took them long term.

I think it is a much higher risk if you have less small intestines because of prior resections.
Posted 6/2/2017 7:53 PM (GMT -5)
I just read the 3rd reason about the hemoglobin and I have not heard that before. My hemoglobin at last blood draw was the highest it has ever been since I've had Crohns. In fact I was able to donate blood a few weeks ago with no issue.
Posted 6/3/2017 6:36 AM (GMT -5)
Had an ileostomy for 2 years and never needed or used antidiarrhoeals.
Posted 6/4/2017 1:11 PM (GMT -5)
over 3 years with an end ileo, & rarely use anti-diarrheal meds. I think I've taken Immodium 2x, due to actual "diarrhea". I sued to take it all the time with UC. My hemoglobin is always fine, I drink lots of H20 anyway, & once in a great while will have a Gatorade. Your surgeon may be one of the best surgeons in Europe, but I've found surgeons don't generally have a good grasp of the day to day life with an ileo. Your best bet is finding a good WOCN, for ileo resources.
Posted 6/4/2017 5:05 PM (GMT -5)
I think it depends on your individual situation. The less bowels, the faster the transit, the more likely you may want to use those types of things. I used it with my loop ileo, but never with my end. I only used it with my loop because I was in a dehydration study and they asked me to. Now with my jpouch, I do not use them regularly at all. I tried it once or twice, but I didn't notice enough difference to bother with it regularly. Didn't seem to do much... My surgeon said everyone is different. He said he has post-surgery patients who like using it, and some who do not bother. I guess you would have to see how it worked for you. Are you going to have your full small intestines removing the colon/rectum, closing up the back? If so, you would be how I was with my end, and things were pretty easy. Didn't need anti-diarrheals - but that was just my situation.
Posted 6/5/2017 9:56 AM (GMT -5)
They (my GI and surgeon) did a rectosigmoidoscopy and a colonoscopy (from colostomy opening) three days ago, they said my colon and small bowel mostly looks fine; but my rectum is unusable due to diversion colitis, scar tissue, stricture...

Because unused sections of the colon has a much higher risk of cancerization, they want to remove my rectum, and anus to prevent the cancer risk. So I'll live with a stoma for the rest of my life, which is not a big problem for me; but the rectum removal procedure has a risk of causing erectile dysfunction, so I'm trying to learn more about that risk.

I also have abdominal hernia from my first surgery, and my surgeons say using a graft to repair the hernia would be dangerous for me due to my Crohn's.

I don't know, there are many things to think about for me right now, thanks for your replies. It's good to know that I don't necessarily have to use opioids after getting an ileostomy.
Posted 6/6/2017 6:45 AM (GMT -5)
Ileostomy for 40 years and can count on one hand the times I've needed anti diarrhoea meds - only ever used them occasionally for tummy bugs.
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