Posted 12/31/2013 5:34 PM (GMT -6)
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!