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Anyone have radiation enteritis, inflammation of your small intestine?
Has anyone else ended up with chronic radiation enteritis from pancreatic tumor radiation. I'm starving to death. Weight is plummeting, blood pressure is low. I can eat and have a g-tube but I can't absorb enough nutrients to stay hydrated. Not enough is getting through the small intestine. If I put too much in my stomach, I just throw everything up.
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I am really sorry to hear that your husband is going thru that. I had 5 high beam proton treatments in May and had no issues. I also had SpaceOar gel inserted before my treatments started and had no issues. I really can’t suggest any remedies for him. I also have UC and am ok. I wish you both all the best
I have chronic radiation enteritis many years aftreer radiation for ovarian cancer.
Have not found any physician with much experience treating this illness, all the research and treatment guideline seem to be in the UK. Where have you found good advice on treating this?
I have had a stricture in my terminal ileum for many years, so frequently had bowel obstructions, so requiring and ng tube, but have avoided surgery so far. Their is very good advice from clinic in the UK, but I haven't found a clinic or physician, gastroenterologist with that extensive experience in the US. Two years ago I put myself on a liquid diet, now live on smoothies and cream soups mostly. Much less obstruction but still have diarrhea if I eat to much fat or have lactose or gluten. Can you recommend a specialist? I live in North Carolina, but I am willing to travel for care
I have had this ongoing issue for 30yrs after Cervical Cancer with total hysterectomy. Had 6wks large doses of radiation with 2 Braccitheray..Not sure of spelling treatments. The Radiation has melted my bowel to several areas of my gut wall/ organs which turn has left me with severe dirrahea & ongoing bowel blockages. It has taken 25yrs for the Radiation damage to finally rear it's ugly head!! Very painful & have pending surgery to have the bowel narrowing removed & will have to have a resection with a Stoma. The leakage has been ongoing since Radiation treatment. No drugs at all seem to have stopped this happening. I weigh 40.1kgs presently & on a very restricted diet of mainly liquids. Its very depressing but Im still alive!! My advice is to find yourself a good Collorectal Surgeon who maybe able to help you. All the best Donna Australia
My wife died of radiation enteritis of small intestine due to pancreatic cancer. It completely destroyed it. She starved to death. Her gastro doctor, who inititally found the problem was Dr. Mysore Nagaraja. He is a very caring and competent Doctor, who was not directly involved with her treatment after her surgery, chemo and raditation. He did however keep in touch with her through out her journey. I called him personally as a last resort when everyone else had given up and he had done research to find a possible soultion but it was too late. She was to weak to go into or out of surgery again. He is in Southern California and I would recommend him.
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1 ReactionSorry, his phone number is 818-363-3105
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1 ReactionPlease post on pancreas cancer area as I am sure someone here as had radiation therapy .
Sorry to learn of your trouble with Pelvic Radiation Disease. I also had repeated bowel obstuctions due to a long stricture of my ileum, but so far have been able to avoid surgery by a very controlled liquid diet with plenty of nutrients achieved by a very active blender and use of many types of protein powder, MCT as primary fat source and avoidance of lactose, gluten and other triggers (FODMOP). started liquid diet two years ago which finally relieved most symptoms. Hope your surgery helps.
Thankyou for your concern. I have been on a quite restricted diet for at least2 yrs. Doesn't seems to be what I'm eating but backup in the bowel as there are several sections of bowel with strictures. I'm hoping surgery as a last hope will let me live not just survive.
I was also on a retstricted diet but kept getting obstructions, then read about strictures with Crohns disease, apparently very common and a disease the gastroenterologist actually understand, conduct research on and some specialize in treating (unlike radiation enteritis a very neglected disease). These strictures are often managed with liquid diets, because liquids can usually pass through very narrow strictures. So two years ago I put myself on a liquid diet. No more obstruction, lost weight until I learn more about nutrition and caloric density. Of course if stricture closes off completely then even liquid can't get through. Still was having frequent intestinal spasms, sometimes followed by diarrhea, until learned to use peppermint capsules, similar to IBgard. I am going to have CT enterography soon to better define my current anatomy re intestinal fibrosis and narrowing. Hope to avoid surgery, even if have to go on TPN. But I do understand that surgery may eventually be needed.