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Scared to reverse ileostomy

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Posted 4/26/2018 6:10 PM (GMT 0)
Did anyone regret having their reversal? I have had my ileostomy for 9 years and I have 2 young boys. I have to change my appliance every 3 days and my new job doesn’t cover the appliances. I can’t afford to have my ileostomy anymore. Either I find a new job or I get a reversal. I love my job, it’s a dream job for me with happy stress ( stress but I don’t mind because I like my job).

Of course, the fear of the unknown is worse. Yes I would like to not to worry about my ostomy any more as I can’t be as active as I would like, rock climbing, swimming causes leaks, I can’t wrestle with the boys as it always causes a leak, etc.. So far I have a great life with no Crohn’s pain. So, not as active but life with an ostomy is great!!

Did anyone regret having their reversal or hear of ostomy friends regretting their reversal? Colonoscopies and enemas hurt really bad so how will actual fecal matter feel?

Tx
Posted 4/27/2018 8:49 PM (GMT 0)
I am happy I reversed. I lived well with my ileo, but I have UC, so the plan was always to get reversed. With Crohn's, you can risk the chance of getting inflammation in other areas, so a reversal isn't usually recommended, though, some people have gotten reversed and do well. Have you met with a colorectal surgeon to discuss options and recommendations? I think that would be the first step in figuring out whether reversal is a feasible option in your specific case. If it is, then the question of the pain comes into play. Why do you have pain with enemas? What are you doing enemas for? I do not have any pain but i didn't with my ileo either.
Posted 4/27/2018 10:24 PM (GMT 0)
Thanks, fo the encouragement. I’m in the process of getting tests to see if we can reverse, with a colorectal surgeon. I had an enema prep for a colonoscopy and he hit a blockage. He then sent me for a barium X-ray which meant another prep but also the barium enema. Today was my final colonoscopy and so I had to do yet another prep. He told me today that I have at least two strictures that the barium dye picked up. I guess that’s the pain these preps have been causing. He dialated the two closest strictures this morning and I thought I’d puke it was so painful! Again, how would that not hurt when it’s fecal matter?
Posted 4/28/2018 6:28 PM (GMT 0)
I have Crohns and regret being reversed instead of making my ileostomy permanent. I think a lot depends on your disease, like location and periods of remission. My Crohns was always bad near my rectum and it came back fast and fierce so I regretted it right away.

I have a permanent ileostomy now and in remission. Very happy with that decision.

Have you tried different appliances for the leaks? I hike, swim, including the ocean, and haven't had any issues with the appliance i use now.
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