More decisions

Last week I had a visit with my GI to discuss what is going on and decide if I should continue treatment with Tysabri. At that point, I hadn't been feeling well at all and had been in a lot of pain. We decided to discontinue this treatment.

My doctor confessed he was hoping I had been worn out enough to come to the conclusion that a proctocolectomy was needed. I wouldn't say he was surprised I wasn't "there" yet because he knows me well by now. But his matter of fact-ness about this kind of irked me. It's really not a decision I would ever hope to make in desperation. But I don't think anyone makes the decision in good health, either.

My biggest problem right now is that I have days where I feel fantastic and days when I feel like SHIT. The good is good but the bad is terrible. This is what makes my situation difficult. Just when I think that life, forever, with an ostomy is my best option for a fulfilling life, I start to feel better again and I think that maybe I should hold out hope that one day a cure will be found or I'll find a medicine like Remicade. Forget about the fact that maybe the ostomy is what is making me feel better. Instead, I get so focused on the need to reverse this thing as soon as an inkling of good health returns.

In many ways I just wish there was some consistency to this disease. I almost, ALMOST, wish I hadn't had those three years of health with Remicade because then I wouldn't be hopeful that the next treatment would send me into a similar remission. Every time I think about those years of my life and the normalcy it brought me, I am optimistic about medicine helping me get back there. I think anyone would prefer a medicine over an ostomy to bring them health.

Earlier this week I was convinced that I wanted to call my surgeon and schedule a consult for a proctocolectomy. I just want to live my life. I want to move on and do all of the things that I know are in store for me. I have so many plans, dreams, and goals for myself and sometimes I just get so mad at this thing that is out of my control dictating my life. I want the control back, and I know the ostomy would give me that. My problem? It's so effing permanent. And it's a big decision.

Thus my other problem. The bottom line is, this is my decision alone. Regardless of the support I have around me, I am the one who has to change something about my body for the rest of my life. I alone am the one who will have to explain this to friends and boyfriends and employers. No one else. Just me.

So the conclusion we made at the end of my GI appointment was to discontinue Tysabri and start Cimzia along with Imuran in five weeks. Yes. I have to wait ANOTHER five weeks before I can even begin these drugs and then wait two months to see if they actually work. To me this seems like a step backwards to be trying more Anti-TNF drugs and Imuran, which I've also been on in the past. It just adds to the feelings I have that I'm wasting my time for absolutely nothing. Even my doctor agreed he is not optimistic at all about Cimzia working for me.

In the meantime, I've decided to seek a second opinion from my old doctor in Maryland. I really want his opinion before I try this new medicine or opt for surgery. This needs to be done either way so I might as well get it out of the way while I wait around. My appointment at the University of Maryland Medical Center is on the 23rd. I am actually a bit excited because I think a new set of eyes to look at my condition will help. And I am encouraged at the prospect of those doctor agreeing that maybe the temporary-ness of the ostomy I have now could be improved with a revision.

I honestly feel that if my doctor in Maryland tells me I need to have a proctocolectomy then I might be ready to take that step. It's just a matter of hearing it from someone else, I guess.

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