Kennedys Disease Community
Two things I should have done earlier

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04-09-2021, 02:18 PM
Bob Heitzman
Two things I should have done earlier
Colostomy and Intermittent self-catheterization (ISC.)

I know, yuck!

As my symptoms progressed it became harder to deal with bodily functions. (I as was well into my sixties.) When out and about it became harder to find public facilities I could use. At home, I struggled with transfers and had several falls. Eventually, my life revolved around my bathroom at home. I was using the outer limits of my physical abilities while doing toileting.

A minor loss of ability due to a fall caused a "urinary emergency." Luckily I got to see a urologist quickly and "walked" out with temporary supplies to deal with my emergency. If/when you start having similar issues I suggest you see a urologist before your emergency occurs. Get some sample ISC supplies and learn how to use them.

Eventually, I reluctantly I had learned what a "bowel program" is and what a pain in the ass it can be, so to speak. The topic came up in a "support" group and some expressed how a colostomy was life-changing for them. I had thought colostomy surgery for my situation would be hard to justify for insurance, turns out I was wrong (at least for Medicare.) Seems that anyone in a situation like ours easily qualifies. I wish I had the colostomy several years earlier while my bowel program was running my life.

email:rheitzman at gmail
04-11-2021, 09:48 AM
Ronald M.
Thanks for sharing Bob. I feel that I am heading down this path myself and like you am getting frustrated with having to manage bodily functions.