This morning I requested an appointment at the Crohn’s and Colitis Center at Mass General.
I love my gastroenterologist. He has a great bedside manner, he talks to me like I’m an intelligent person, and he’s never given up on trying to get me into remission. But I feel like I’ve hit a plateau with him. I’m not acutely ill anymore, but I’m not in remission, either. I’m still going to the bathroom 6-8 times on an average day, although usually without blood. I still have pain every day, albeit not acute pain. I still can’t go anywhere without constant and quick access to a bathroom. I haven’t had an accident in a few months, but I’ve come very close, close enough that I would’ve had accidents if I hadn’t been at home.
My illness is controlled, but not well controlled.
The worst is the non-gut symptoms. The fatigue and weakness have made most of life inaccessible to me. The joint pain is often debilitating. I have constant nausea. I believe a lot of that, at least the fatigue and nausea, are a direct result of the 6-MP. The fatigue really flared up when their doctor on call upped my dose from 75 mg to 100 mg, but it hasn’t gotten much better since I went back down to 75. Iron supplements help some, but I haven’t been taking them consistently because they make the pain and diarrhea worse. Nothing is really helping with the joint pain, and it really doesn’t help that I’m allergic to NSAID’s.
I’d like to be able to go off the 6-MP. It might significantly reduce my non-gut symptoms, or at least give me a baseline to know how much is the UC and how much is the meds. But my gastroenterologist is hesitant to even reduce my 6-MP dose. I get it, I do–it’s the only medication that’s made my UC at all manageable. I’d also like to get off the steroids, but I flare every time we try. Hurray for steroid dependence.
I think my gastroenterologist is just out of ideas because the typical treatment just isn’t cutting it for me. There aren’t a lot of treatment options for UC, so I think I need someone a little more creative to generate some new ideas. I’m even willing to consider surgery if it’ll let me go off some or all of the meds that are making me so sick.
I just want to be able to have a better quality of life. I’m so sick of being sick all the time.