BRIAN’S PERSONAL STORY

For me my GI issues started in my 20’s when a sarcoma tumor was found at my exit. The anal resection surgery cost me years of mild leakage and IBS. All the so called diets did little for me. 12 years later I had my first major colitis flair. Doctors found my entire colon had colitis and I have had this then IBS. And why one diet aggravated the other. They started treating me first with high doses of steroids. I order to keep my job I had to wear diapers. I switch GI doctors that tried me on every drug. I asked for an upper GI because of the one tumor. Doctor agreed and 2 tumors were found on the head of my pancreas with one ulcered into my small intestine. More drugs, chemo, and even radiation was done. When my blood sugar started to crash a surgeon went in and removed the tumors, a small part of my pancreas, gallbladder, and a section of my small intestine. About 8 months after that surgery the colitis did come back. For another 9 years I took steroids to control it. My weight shot up to near 300 pounds and blood sugar went nuts. I refused further drugs at this point. My colon was so damaged I went from loose to not able to go. I had to take stool softeners daily. After me saying no my GI doctor sent me to a surgeon. First thing that doctor said was why did they wait so long. I had to go back to the hospital that did my pancreatic surgery. Jan 2020 I had a proctocoloectomy done with a permanent ileostomy. Only an anal stump remained. Due to covid the anal stump remains. But one thing my first surgeon said to me came true. For every year past 10 years with colitis your cancer risk goes up 10%. 2 months after I got home I started running a fever and felt weak. 2 hospitals later I was diagnosed with leukemia (AML). The cause could have been anything I went thru. The years of colitis or the 2 times I had chemo and radiation. Due to my age I was not a candidate for a stem cell transplant. While I made remission it didn’t last. My bone marrow is too damaged now. I haven’t been given ling to live. The main reason I want my story posted is inform others getting options for care. The ileostomy has been wonderful after getting past the first few months of size change. The end ileostomy is the easiest to care for. Don’t wait if you get the option. Colitis has links to cancer if you’ve had it years. Most don’t think leukemia is one.

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