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Crohn's Disease Forum » General IBD Discussion » The Good Day/Bad Day Problem


10-25-2009, 11:39 AM   #1
Procyon
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The Good Day/Bad Day Problem

Has anyone else ever been in a situation where they just don't understand the way that their disease is progressing anymore? I've been in one of those gray areas over the past few months, where sometimes I feel good, and sometimes I feel bad.

For example, a couple weeks ago, I had a stretch of several days where I actually felt pretty good. Relatively no pain at all, and my stools were something solid. I hadn't had solid stools forever, so it really felt like a step in the right direction. (The stools were really thin, which might suggest my bowels are getting a bit narrow, but it was still exciting to have something solid for once.) But I didn't get over-excited, because I knew it wouldn't last.

I slipped into another period of kinda bleh, and now I'm in a several day stretch where I'm worse than normal. Now I have more pain than usual, I feel like I've crapped out a pint of blood along with whatever else came out, my joints hurt, and I feel like I've got a piece of glass stuck in my anus.

But this only seems to last for a few days, and then I'm back to my average, "not very good, but not so bad that I'm dysfunctional" (i.e., I'm good enough to go to school and get my schoolwork done, but that really wipes me out). This makes it difficult for me to understand the direction that I'm going in. Sometimes I feel like I'm getting better, only to become disappointed by the next bout of crappiness. And sometimes I feel so crummy, that I'm on the verge of calling my doctor, and being like, "Um, this Cimzia stuff isn't doing what it's supposed to, because I feel horrible right now," only to feel better enough to function properly again a few days later. So maybe my disease isn't going in any direction at all, and I'm just in some limbo-land of half-flare/half-remission.

I really don't know what to do in a situation like this. I mean, sometimes these stretches of worse disease activity can be a real pain, because they'll interfere with my ability to do school work. And obviously, the situation as a whole is frustrating, because the goal is to be in a prolonged stretch of feeling good, rather than a prolonged stay in limbo-land. I at least want to get to a point where I feel good enough to do more activity than the bare minimum. As in, work out/exercise, and other activities in addition to my school work.

I'm sure that some of you might be able to relate with the limbo-land thing? What's your experience with this? What do you do in situations like this, and do you have any tips for me? Does being in a situation like this merit trying to get my doctor to put me on something besides the Cimzia, or on more meds? Or do I just deal with it, and see if things eventually get better or worse of their own accord?
10-25-2009, 03:26 PM   #2
teeny5
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I can relate to what you are going through. For a while I felt like I was on a roller coaster. Felt good for a few weeks then 2 weeks of hell. Even now in "remission" I have days where I feel totally normal and others where I am totally exhausted and feel like a flare is coming. What is that all about? Some days I just feel like I am 80 years old. Others I feel like I am 23 again.

In the past I was having pain everyday no matter what. I questioned my GI about the meds I was on and he said "they are working don't worry." Well, then the pain got worse. This helped because then I could demand something different. It was like a miracle. A change of meds and my whole world turned around. Don't get me wrong I still have pain, occaisional night sweats, bloating, exhaustion, and can't eat many things. But I feel I have come a long way. If you truly feel like you are not in the right spot with your meds ask for a change. Just know you are taking a risk that a med change might make you feel worse. This too has happened to me.
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Previous meds: Sulfasalazine, Asacol, Rowasa, Pentasa, Entocort.


"Adopt the pace of nature: her secret is patience. -Ralph Waldo Emerson"
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