Hello Pouchers,
Fatigue and Joint pain have been a real issue for months now. No answers from GI docs on this question so on Monday I don't take my Humira injection, I don't take my Imuran. I seem to feel a bit better on Tuesday but by Wednesday my GI tract is in the process of a meltdown; I feel a deep burn in my lower rectum and the urgency starts to ramp up severely. I inform my GI docs office, and take a syringe out of the fridge because I realize I will HAVE to inject the Humira now. My suspicion being that Imuran is the problem (fatigue, joint pain) but I have no conclusive proof of this since I only stopped taking it 4 days ago.
My GI calls and makes no mention of my fatigue and joint pain issues, he only refers to them as 'your symptoms' that I am 'incorrectly ascribing to Imuran' etc... He only tells me that the two (Humira, Imuran) are proven effective and that I risk losing my Pouch unless I get back on both immediately. This is a voice mail I am listening to, and he has used this language (losing the pouch) before which I find very disturbing as you can imagine. He talks often of the risks of losing my Pouch and all I can think is; if I am REALLY in danger of losing my pouch why am I not in the hospital now being evaluated, scoped, and alternative therapies being discussed?
I don't know if he is fear mongering me or if I am seriously at risk here? He is not in his office today to discuss this... So, I call his nurse and ask if I need to be admitted to the hospital or what? I tell her that Dr. X keeps telling me I am in danger of losing my pouch and if that is truly the case then we need to take action now, right? She has no response to this and I tell her that this situation is not acceptable.
I don't want to find yet another GI doc, again.... Currently, it seems the Humira injection has headed off a bigger event, I feel shaky still but otherwise okay with decreasing urge, no bowel obstruction, no blood, and labs are normal.
Has anyone else had these sorts of issues or exchanges with their GI docs? The side effect profile of Imuran is awful, but should I keep taking it anyway? I'm usually not confused but I am now...
MK
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