Sorry I didn't get back to you yesterday but we woke up to almost 2 feet of snow and my dr is 3 hours away! So by the time we got home and got our daughter home from work, got in the driveway, dinner, etc. it was 9pm. My drs. (I always see the NP) but this time the dr wanted to see me too bc I had to have 2 transfusions on the 17th, a scope on the 18th where they found some bleeding vessels that they cauterized & then a blood clot on the 19th that I had to have emergency surgery on. By the 25th my blood levels were almost back down to the same level as before the transfusions so they are quite concerned and are trying to figure out what is going on. Most of the problem appears to be from the diarrhea and my limited diet. They want me to try a bulking agent (fiber) again to see if it will work this time. They also put me on a maintenance dose of tylenol #3 to see if that will help slow things down as when I had the blood clot in my leg & I was on pain meds things slowed down. So we are trying that for a mo. I wasn't for this at all but they just want to try it to see if it will slow things down enough to get some nutrients in me. They are doing a pediatric scope to go down further from the top to see if there is any bleeding on the 17th.
Has your dr tried you on any regime besides lomotil? We started with the BRAT diet for 5 weeks, then a bland diet & imodium for 4 weeks, then 6 lomotil with a capful of liquid imodium before every meal. A tapered dose of Entocort (a steroid for the gut), & Questran (a scoop every day). There are several things to try & I hope your dr is being proactive as this is taking a very big toll on my health at this point.
I hope you can get the help you need and everything works out well for you.