2-years post bowel resection
Had bowel resection in 1/2022. 2 stricture areas removed and appendix and was benign, thankfully. Theory is comes from pelvic area radiation in 1987 for reproductive organ cancer. Also have stage 3 Chronic Kidney Disease which may or may not be an 1987after-effect. After two years I have continued to have diarrhea for past two years. Without Limodal I could not function or work but don't dare go anywhere without a bathroom. Boss is understanding. Had every test imaginable – labs, CT, internal ultrasound, etc. A low fiber diet suggested but despite fairly normal other cholesterol numbers, my tryiglycerides are 600. Taking meds to bring that down. In addition to the diarrhea, I have pain from about my navel to my pelvic area. It wipes out my energy. I tell my drs this but it feels like they never hear nor address that serious issue. I am at about 25.5 BMI (did lose weight), don't exercise (I know bad), and am 65.5 years old. Have an internal med dr and a gastroenterologist. Husband is in palliative care and I am the long distance caregiver for a family member with fairly severe mental health problems that also affect my "gut". Any suggestions welcome. I do plan to try to start walking, then building up to some low weights for building back muscle loss. (Tooks a couple years to diagnose what my problem was – prior to that I had bouts of 3 – 4 day nausea, vomiting, severe gut, pain and then explosive diarrhea every 4 – 8 weeks for 3.5 years.)
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I had radiation for endometrial cancer in 1995 followed by extensive radiation. I had some digestive issues afterward but no big deal until 6 years ago when I had colon cancer. This cancer was a result of the radiation exactly 20 years prior. The surgeon who removed the tumor also removed almost two feet of my small bowel in order to make a safe connection. He said that those two feet were so damaged by radiation that he had to remove them and that they weren't doing me any good anyway. Wrong!! Since then I have had diarrhea abd gas. Like you I always had to have a bathroom near but I had accidents in my own house because the diarrhea came on so fast.
A couple of months ago everything got worse except the diarrhea which was better. What was worse was intense abdominal pain. I saw a Chrohns specialist who told me that everyone needs an intact ileum which is where I am missing so much small bowel. He wasn't really any help except for the explanation.
My regular gastroenterologist performed a colonoscopy and found no cancer but inflammation of the small bowel. He prescribed budesonide, a steroid, which I haven't taken yet because the pain improved after the colonoscopy. He is sure the inflammation is not Chrohns although that's what it would look like. I'm positive it is from the long term effects of the radiation.
I apologize for the long post but I wanted you to know that you are not alone in suffering the after effects of radiation. I'm being treated at the same medical center where I had the radiation. They tell me that they don't do the extensive radiation any more. I'm glad but sorry that they did it to me. I should have had chemo instead.
I had a small bowel resection 27 yrs ago. It was all removed but 17 inches. It was a miracle I survived and am still going. I found out I had a clotting disease and my small intestine was full of blood clots. I too had the constant diarrhea and I lost 70 lbs over 2 yrs. The drs said being overweight helped me. Over the years my bowels have changed. I have intermittent constipation with diarrhea. I’ve learned which foods trigger me and which foods to avoid all together. Originally I was told I would be on total peritoneal nutrition (TPN) the rest of my life but was only on it for a year. I really feel for people with Short Bowel or anything to do with bowels. Losing my intestine also affected my kidneys. I ended up on dialysis for 5 yrs and then got a kidney transplant. It’s been a lot but I’m very thankful to be alive as I’m sure you all are. I wish you the best on this journey and I hope you will find some solutions to your issues.
Sorry you are having so much difficulty. “Stone Age” radiation meant “good tissue” was negatively affected. I don’t regret the Tx in 1987 since it saved my life. But the bowel resection after effects 3 years out are getting really old. Have to be careful of kidneys bc of Stage IIIb chronic kidney disease. Tonight I had b. movement that nearly made me pass out from the pain. Exhausted from chasing solutions, daily bouts of diarrhea and pain.
Thanks for the hugs.