Posted 2/25/2011 8:19 AM (GMT 0)
I had a thought today while talking to a coworker who also has UC, about my frustration at trying to get this disease under control... frustration is a word that comes up in my mind a lot.
I was originally started on some prednisone and Lialda. I was getting better, not all better yet, but in the right direction and I was happy. Then at my first followup, because of a mention of blood one one day (which felt like a freak incident, blood has never been a big symptom for me) she switched my Lialda to Asacol. A couple days the diarrhea started up again and I couldn't help feeling like there was a connection. She insisted that it was the disease making me feel bad, not the medication, and I had my prednisone raised.
At my next followup I said I felt like I was right back where I started. She still insisted that side it was the disease, not the medication, and I'm just one of those who is being harder to get under control. She added librax for cramping and immuran which I understand is to eventually replace the prednisone. After having a great week (and letting them know I was doing better, I just knew I was jinxing myself), and it all went bad again. Had some bloodwork done, immuran dosage raised, and that's where I am now.
I know the immuran takes time to start working, so I'm in a wait and see phase, BUT, if I make it to my next followup and am still not getting better...
I'm seriously thinking of asking to stop all the meds, give my body a week or two to reset, and start over. I feel like there's so many drugs going through my system right now that it's impossible to know what's me and what's a side effect. (I guess prednisone would be the exception since it has to be tapered, but I don't have the same fear that it's causing side effects are the same as it's supposed to cure.) As it is we're just escalating and escalating. I was told the next step, if these don't work, is the IV infusion. What if I was right about the Asacol to begin with?
Is there any merit to this idea or is stopping meds, even temporarily, a Bad Idea?
I don't feel like I could get any worse - I know tempting fate by saying that, but my bad days are just as bad and frequent now as before I was diagnosed. And I don't have it hospitalization bad, like some people, just really affects my everyday life and I want it to go away bad!
There's also another experiment I'm curious about - I've seen that some people take Immodium daily just like any other medication. Back in the day Immodium was my miracle drug when I needed it but now I swear it doesn't do a thing... at least not when I take it. However, it may be coincidence, but I feel like it guarantees a good *next* day or two. I'm wondering what would happen if I just did a daily pill or two, however I wouldn't want to try that with everything else I'm on because if I do start feeling better then I don't know what to give credit to.