I have a permanent ileostomy due to Crohn's disease. Looking for others who are in the same boat. I struggle with flare-ups, both intestinal and extraintestinal (uveitis/iritis, SI joint pain, fatigue, etc.). I was on azathioprine for a few years, but that gave me acute pancreatitis and almost killed me. I started Humira and my Crohn's got worse, plus horrible side effects. Now I take LDN, and though I still have flare-ups, they are nothing like before, and there are no negative side effects. My ileostomy was an emergency surgery. It had to be done in two parts because my uterus and some other stuff had to be removed, and they needed two surgeons. The Barbie butt surgery came later. Later, I needed stoma revised because there was too much scar tissue left from the first surgery. I weighed less than 80 lbs, needed blood transfusions constantly, IV antibiotics, TPN, and some other stuff I don't remember because I was also on massive amounts of morphine for the want-to-die pain. I spent two years in and out of the hospital. I still end up in the hospital at least once a year since then. Just when you think everything is fine, whammo. I definitely have some hospital PTSD. I have eliminated gluten from my diet and find that makes the biggest difference. I am coping with my ileostomy; it saved my life, and life is in many ways easier now than when I had a colon. But the unpredictability and overall impact on my body from Crohn's is too much at times. I won't go into my experiences with gastroenterologists; it would involve too many expletives. I have come a long way and have learned a lot, gone to therapy, read a lot on the subject, but, well, you know if you are in the same boat. Like with so many struggles in this life, it is important to know that we are not alone. I could ramble on...
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