Anyone here have an ileostomy when they were already immunocompromised?

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th
Dec 15, 2023 2:43 pm

I have no spleen, colitis, and pelvic floor issues. Going to the bathroom is painful every day. My colitis is under control. I have lived on laxatives every day for years, and my rectum is shot, slow colon nerve damage, prolapsing internal hemorrhoids. I honestly am not able to find a doc willing to give me an ileostomy because they think I am too high risk because I have no spleen and am immunocompromised. I lost my spleen due to an anal manometry test where the clips were placed too close to my splenic flexure, and my spleen was ruptured. I can't get hemorrhoid surgery due to being immunocompromised and proctitis/colitis.

I live in MA, and yet with all the hospitals, I can't find a surgeon. Mass General pelvic floor dept. was useless. HAS ANYONE HERE, WITH NO SPLEEN, HAD ILEOSTOMY SURGERY? My issues are really from pelvic floor issues and now a slow colon. I did get an opinion from Cleveland Clinic who suggested I move there for a year for multiple stepwise surgeries, but I can't move there and live there for a year. I am 70 and on my own. Hoping to hear if some asplenia patient on this website had ileostomy surgery, and if so, where, by whom, and how it went.

warrior
Dec 15, 2023 7:51 pm

How compromised are you? Are you on heavy suppressants?

I am sorry I can't help you. But wow, I am really 

puzzled. Being in Mass., you can't find a surgeon. Moving is impossible... Being on your own sucks.

And your age could also be a factor. But being immunocompromised is b.s.

Never stopped a doctor or surgeon

from seeing me. And I have been on prednisone 37 years with biologicals too. I think doctors are looking at you, sadly to say, as a liability.

But you are not. Those doctors need an enema of common sense. 

Hate hearing stories of being turned away like this. It's unheard of.

So sad. I am so sorry.

Someone here will help you. Be patient. Blessings.

 

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