Guest guest Posted February 25, 2005 Report Share Posted February 25, 2005 Hi everyone - I'm back after a long hiatus to ask a question to those folks who have completed their surgeries and therapies. First a little background info, my husband was diagnosed with stage 3 colorectal cancer. He had the tumor removed, a temperary ileostomy, 7 chemo rounds (5fu and leukavorin sp), concurrent radiation therapy (28 days), an ileostomy take down, and a C.diff. infection. He's had great (clear) blood work and scans for the past year and a half. Anyway, he still needs to take imodium (or tincture of opium) with every meal or else he would be living on the toilet. He also has to watch what he eats or he'll pay for it. Also, he can't gain his weight back. We have a friend who went through a similar treatment course 12 years ago and he has similar ongoing side effects. I think it is radiation enteritis as the symptoms and the culprit foods coincide with their side effects, but the drs (both my husband's and our friend's) say that nothing that they did would cause this long term side effect. Does anyone have experience with this long term side effect? How do you deal with it? Has it been diagnosed? Any information would be greatly appreciated. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2005 Report Share Posted February 25, 2005 I also am no expert.. but, here is my 2 cents. Although, I believe radiation can do plenty of it's own damage.. as it has on myself!! (2 fistula's so far.) And it may well be the radiation that caused damage. I have had a colostomy for a year now. It will probably never be reversed, both by my choice and my surgeons. My choice because of what your husband is dealing with, and my surgeons because of issues with my bladder, due to radiation. But, my husband who has an ileostomy (he had ulcerative colitis 20+ years ago, before we met). I had always asked him why he didn't want to reverse it. (I was rather naïve at the time about such things!) His response was, and always has been the same.. " because I don't want to spend the majority of my day on the toilet, nor do I want a restricted diet " ... He was told that would potentially be the case if he reveresed it, and as I already mentioned, his surgery was over 20 years ago. He had his entire large colon removed. Pretty ironic we are now both " ostomates " huh? My kids will grow up thinking everyone has a poop bag on their tummy!! LOL! Have you ever gone to the http://uoa.org/<http://uoa.org/> site? Great information on their message boards, of you don't get an answer here.. ask there. -------------------------------------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2005 Report Share Posted February 25, 2005 Yes, I resemble that remark! I would have diarrhea no matter what I ate if I didn't take medication for it. I'm a stage 1 survivor that had 28 days radiation/xeloda. I did get radiation enteritis which caused a small bowel obstruction. I had to have surgery again to cut out the damaged loop of small bowel. I have not noticed any particular food that causes my problems to be worse (now anyway). Previously I had problems with tomato sauces, picante, etc... This is probably because they're really acidy. I still have issues if I drink more than a beer or two. ;-) (I don't do that anyway so no big deal.) I take Welchol twice a day. Without it I would be tied to the bathroom. The medicine absorbs fatty acids and is primarily for cholesterol reduction. It has the effect of slowing down the digestive system. I had to have an upper GI with small bowel follow through to check for any obstructions before they would prescribe the drug. The most frustrating thing with this was that every doctor would look at me and say, I don't know. Good grief! I wanted to scream. Even when the doctor prescribed welchol, he still shrugged and didn't diagnose anything. Anyway, I'm sad to hear that you know of the problem. I feel relieved that I'm not the only one though. This problem has been the biggest pain of all since it won't go away. Good luck and miracles happen, Cliff H. > > Hi everyone - > > I'm back after a long hiatus to ask a question to those folks who > have completed their surgeries and therapies. First a little > background info, my husband was diagnosed with stage 3 colorectal > cancer. He had the tumor removed, a temperary ileostomy, 7 chemo > rounds (5fu and leukavorin sp), concurrent radiation therapy (28 > days), an ileostomy take down, and a C.diff. infection. He's had > great (clear) blood work and scans for the past year and a half. > > Anyway, he still needs to take imodium (or tincture of opium) with > every meal or else he would be living on the toilet. He also has to > watch what he eats or he'll pay for it. Also, he can't gain his > weight back. We have a friend who went through a similar treatment > course 12 years ago and he has similar ongoing side effects. I think > it is radiation enteritis as the symptoms and the culprit foods > coincide with their side effects, but the drs (both my husband's and > our friend's) say that nothing that they did would cause this long > term side effect. > > Does anyone have experience with this long term side effect? How do > you deal with it? Has it been diagnosed? > > Any information would be greatly appreciated. > > Thanks > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.