Dealing with immunotherapy-induced colitis from Keytruda was one of the worst side effects I faced, even worse than the rashes, fatigue, weight loss, and pancreas damage. Colitis was relentless and ruined my daily life. It took almost 2 years to find a doctor who could help. Now, I’m thrilled to be off all the meds for my gut pain, and my stools are almost back to normal. An extra tid bit of info that’s not in the video is: I was on Zenpep for a couple of years because my pancreas wasn’t producing enzymes, and my lipase levels were super low. This expensive pill (I’m talking $1k for a 30 day supply without insurance) helped solidify my stools a bit but didn’t fix the root issue, which was colitis. My colonoscopy and endoscopy detected lymphocytic colitis. I used to wake up every morning and multiple times a day in excruciating pain, spending hours on the toilet. Then I found a GI who suggested Budesonide. After taking it for 3 months and weaning off, I’ve been pain-free. I had one episode after my last pill, but it was due to bad food I think. After Thanksgiving dinner, I was a bit uncomfortable, but nothing compared to the past pain. Things have been pretty settled since then. I’m still gassier and burpier than before Keytruda, that part is not going away… like at all.. but my quality of life is back, and the pain is almost nonexistent. I still feel that fist in my side occasionally, but not having any colitis episodes in weeks is a huge win for me. • •
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