Meet & talk to fellow OstoMates Support | Friendship | Relationships


I’m having a loop ileostomy this month (August 2021), with the longer-term plan of making it permanent with a colectomy due to extremely slow colonic transit and severe IBS-C.
It’s one of two complex conditions I’ve been managing for most of my life (rheumatoid arthritis + fibromyalgia are my other foes).
I’m hoping the grass is greener on the other side. After many years of pain, distress, and a host of other horrible symptoms, I’m hopeful that many of the challenges I face with this condition might be relieved by surgery and that adapting to a changed body and managing a “device” will be far less intimidating than I fear it will be.
My bowel condition has contributed to the loss of many experiences, relationships, and opportunities (career progression, pregnancy, my marriage, time with friends, going out to dinner… just to name a few). While I cannot go back in time and recover those lost moments, people and chances, I hope this surgery gives far more than it takes away. I’m in awe of other ostomates’ resilience and confidence and hope a little might rub off on me!

Update (23 Aug 2021):
I’m on the other side. It’s been a very bumpy ride despite my preparedness. I’m a clinical writer for the NHS website (and floral designer in the side) and thought I’d read all there was to read, practiced with a faux stoma and a verity of bags to find my “bag of choice”, but some aspects of a loop ileostomy have been very confronting. Two stomas, for a start! I’m small, so I’ve lost about 1/12 of my abdomen to this thing. The noise from my stoma, pain, itchy skin I’m desperate to scratch, and developing a hernia are the critical issues - how to accept myself and the alien attached to me are secondary burdens that prompt lots of tears.

I worked as a nanny for a few years, and was very involved in caring fir my niece as a baby - bodily messes are familiar and I’m very practical. But being confronted by my own, hourly, is more overwhelming than I anticipated.

I hope I get to a better place soon.
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