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Anyone have radiation enteritis, inflammation of your small intestine?
Cancer: Managing Symptoms | Last Active: 4 days ago | Replies (30)Comment receiving replies
I’ve had similar experience. Radiation, chemo, and hysterectomy for cervical cancer. One small bowel resection, and one blockage repaired laparoscopicly since then. I’m now twenty years past the original treatments, and experiencing inflammatory enteritis periodically. I avoid fiber, fat, and big meals. It seems like there is nothing in particular that sets off an episode. Sometimes the episodes last only a few days, and can be managed with Imodium and BRAT diet. Other times, the episodes last a week or so. I loose weight that I am unable to put back on. Am getting weaker every year. Gastro doctor prescribed Creon, a highly expensive drug that gave me diarrhea. It’s a rough road those of us with enteritis are on. I wish I had some suggestions for you all on how we can manage our symptoms. It just seems like we have to keep on keeping on. Wishing you all well.
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@bisbeea Has your doctor talked with you about Total Parenteral Nutrition (TPN) therapy? I had base of tongue cancer with left cervical lymph node involvement. I thought the radiation and chemo combination was going to be the end of me. I had a few issues after treatments. One was osteoradionecrosis of the jaw, which was healed superbly by HBOT. But I also could not get enough nutrients to sustain any quality of life. My PEG tube never worked. I threw up every time the formula was put in. CT showed it was properly in place. Guess my body rejected having substance enter my stomach that way. I don’t know. But my weight dropped from 195 to 110 in a matter of 3 months. I couldn’t eat. It was a challenging time. My medical oncologist set me up for TPN. This requires a nurse or somebody well versed to get you set up each day. My spouse helped me. She’s not a nurse but she understood her role and I’m a very blessed person to have her. I stayed on TPN for a few months. A registered nurse came in weekly to get blood. You check your blood sugar multiple times a day. Based on the blood results helped the solution company determine what nutrients you needed in the next weeks delivery. Slowly I gained about 8 pounds. This might not be for everyone. But it’s worth the conversation. If your doctor doesn’t know what it is, first shame on them, second find someone who does know about it. You NEED to understand what it is and if the objective you’re striving for can be reached with this therapy. I could write a book about it, but everyone is different. It got me to the point where I could start eating by myself and get some nutrition that way. I did TPN for 2 months. It was my lifesaver.
Yes, my insurance paid for it. I have BCBS PPO. I did have a deductible to meet then my portion was 10% until I reached out of pocket (OOP) maximum in which case insurance paid everything the rest of the year. You all know when you have cancer you meet your deductible and OOP very quickly in the new year.
So, anyway, for all you out there struggling with your weight and nutrition, please open a conversation. It could be your lifesaver.
Cheers, friends!