Endless diarrhea

I am an 80 year old woman in good general health. In my late 30's I had endometrial cancer which resulted in a hysterectomy and 6 weeks of radiation over my lower abdomen. Radiation is much more precise now than it was then. As a result of all the radiation I ended up with radiation enteritis. I began to have severe diarrhea, even accidents, not long after the surgery but the bouts were intermittent and I took Lomotil. about 15 years ago things became much worse. I had more frequent diarrhea, vomiting and pain and was told I needed to have my gall bladder removed. This made the diarrhea even worse and I started taking Prevalite. Also at this time I began to have obstructions and would end up in the hospital with the n-g tube (which I came to consider a blessing). At about this time I finally received a diagnosis of radiation enteritis. My philosophy was that if I only was in the hospital once a year I could handle it. However this fall I was in the hospital with an obstruction twice so I decided to have the surgery. (I had been consulting with the surgeon for about 6 years.) I was told it would be rough but I had no idea. I have been very active (even still work a bit from home) and am the kind of person who will try to handle things herself (for example, I learned to tell the difference between a partial obstruction and a full obstruction and could often tough out the partials.) For many years I have eaten only a low fiber diet. I haven't had a salad or a piece of fresh fruit except for a banana for many years. I had surgery 6 weeks ago, an ileocecetomy during which 3 feet of small intestines were removed, and although my pain is not severe I am still having 10-15 bowel movements a day. I feel I am spending my life buying food, preparing food, eating food and sitting on the toilet. It doesn't seem to get better, I take 2 Lomotil and 2 Immodium alternately every 4 hours plus Prevalite 3x a day. I am extremely depressed. I would love to hear from someone with a similar experience who has gotten better. Thanks.

To Kazber,
Thanks so much for responding to me. It really helps to know that there are others out there who understand.

Hi Anna,
Sorry that you have been suffering. Don't have enough knowledge about resections as I haven't had it yet. Yet can relate to endless diarrhea. My normal trips to the bathroom were 7+ and lately they became 3 or 4 due to rectal spasm. However, yesterday I had 17 bms. I called to see my GI but he recommended I increase Imodium. I took Questran (cholestryamine)sp instead. I'm not sure whether you take it for your gallbladder or not but it has been a life saver. I normally take it along w Imodium when I have nonstop d and it is effective.
Hope you feel better soon :)

I had an ileal resection in 1999, during which I lost a foot of intestine. I've had diarrhea pretty much nonstop ever since. Nobody warned me that removing a foot or more (and you've certainly lost more!) of your small intestine could result in a condition called "short gut syndrome" or "bile salts diarrhea". In some people, it goes away after a while; in others (like me), it lasts forever.

Sometimes I go through periods during which it's better (i.e., still unformed and full of mucus, but less frequent, which is a relief), followed by periods during which it's endless and exhausting. Diet doesn't seem to make much of a difference. I know the location of every bathroom for miles and miles around--and which ones are the cleanest.

Many people find relief with cholestyramine, a prescription powder that can be mixed with juice and taken once or twice a day. It's something worth trying, although it may take a lot of trial and error to figure out how much of a dose works for you (significantly lessens the diarrhea without making you feel bloated and stopped-up). I tried it, but didn't like it. What works for me is a drug very similar to immodium or lomotil--it's called Motofen, and many physicians don't know about it; its formula is almost identical to the other drugs, but for some reason it works better for a few of us. When I'm feeling utterly exhausted, which only happens once in a while, I treat myself to some Tylenol with codeine, which (a) stops the diarrhea and cramping for at least six hours, and (b) gives me a nice buzz, which I appreciate, since I haven't drunk any alcohol since my diagnosis 15 years ago.

For me, one of the toughest things about chronic diarrhea is keeping your bottom clean (a hard thing to do, when you're running into and out of public restrooms all the time). During really severe periods, I can get chafed and sore--a situation that's resulted once in a perianal abscess (something you really want to avoid) and once in a thrombosed hemorrhoid (also better not to experience, but not nearly as bad as an abscess). I'd keep some wet wipes in my purse, if I were you--along with a spare pair of undies for emergencies. And when you get chafed and sore, I really recommend an over-the-counter preparation called Calmoseptine. If your pharmacy doesn't carry it, they can order it for you. It really really helps.

I hope that you're one of the people whose diarrhea clears up after a few weeks or months. If not, try all proffered meds until you find the one(s) that works best for you. I've been living with this for almost 15 years, and I'm so much better at handling it now than I was years ago. I hope that 2014 is a wonderful year for you!

Wow, I'm so impressed that you'd just walk into a funeral home! The cleanest bathrooms I've found have been in car washes (which stay spotlessly clean, since almost nobody ever uses them), urgent care clinics, hospitals, and any public library that hasn't become a refuge for the homeless.

As noted in my post, I, too, have found relief (for six hours at a time) from opiates, although I try to take them as infrequently as possible. But my gastroenterologist recommends that I take them daily, and I hope that they continue to work for you.

Much luck to you, too, in the new year. May your symptoms diminish and disappear by themselves--or may your meds do miraculous work for you!