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Looking to meet others that are in a similar situation as me. Just for talking, listening, support, etc. I have Crohn's Disease and have had it since my early 20's with off and on remissions and several hospital stays throughout the years. In 2017 had the worst flair of my life ended up with a bowel perforation and sepsis. Brought to the ER and probably would have died if I wasn't forced to go. At the time I was in so much pain that dying seemed like okay to me. Emergency surgery ensued, I was so out of it I barely remember being told what was going to happen. Woke up with my little frenemy on my belly. Fast forward several months, looking forward to a reversal, yup that happened. One week after my reversal my entire abdominal area opened. My wound dehisced and I developed an enterocutaneous fistula (ECF) that leaked stomach acid all over my belly, burned my skin making healing impossible. I wasn't able to eat or drink anything for about a year to reduce to flow of acidic gastric juices. At the end of 2018 I was finally 'well' enough for surgical closure of the ECF and yet another section of bowel was removed. Took me a year to recover from that surgery. Now I have a colostomy which will likely be permanent. My surgeon keeps advising against a reversal. I am trying to make peace with having a permanent colostomy, but it's difficult. My family and friends are great, understanding and supportive but they don't really 'get it'. It would be really cool to talk to people who have first hand experience and knowledge of just how much a colostomy changes your life.
sweetdskee @ yahoo . com
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