Friday, October 28, 2011

Broken Record. I know..I know

I haven’t blogged in quite a while; mainly because I’ve been feeling better. Even though Crohn’s is on my mind daily, I try my best to move on with life. My focus was to not let it consume the lives of those around me – especially my fiancé (I know I say this a lot). I don’t want him feeling like he’s living with Crohn’s! It’s bad enough that he sits with me every 4-8 weeks for my Remicade infusion. I pass out, totally drugged on Benadryl; while he is wide awake observing all the IV patients. Not exactly the most pleasant way to spend your morning. But at least he gets to drink my apple juice and eat my free turkey sandwich. It’s really quite tasty! I sound like a broken record…..
This past month I’ve had a lot on my mind. I may not have every day jolts to the restroom, but I’m still experiencing medication side effects – this is generally why I’m reminded daily of having Crohn’s. So it seems like even if my colon is semi in remission, I will always be suffering with something else. It’s this awful chain reaction of side effects. It’s a coin toss really. One week I will experience bad headaches, another I will be a walking zombie because I’m so fatigued. Now between the medication side effects I still experience the encyclopedia symptoms of Crohn’s: stomach cramps, bloating, gas, constipation and exhaustion. However, I feel living a life with any kind of daily symptoms is annoying enough and hell. Now, does this mean that I need to get off ALL medication in order to feel normal? If I asked a doctor, the answer would be: no. I know that going untreated may result in more colon damage and inflammation. We’re supposed to trust in our doctors that they have weighed the benefits and risks of giving you these medications. However, they can’t predict how your body will react to them at any given moment.
I’ve been on the maximum dose of Imuran for a while now. Reading any literature on azathioprine is intense. I can’t focus on the positive, because all I see is Hepatosplenic T-Cell Lymphoma. As of 2011 the FDA is now updating the number of cases of IBD patients who have been affected. I’m just crossing my fingers it hasn’t increased. At the CCFA seminar, my Crohn’s doctor spoke about new upcoming treatments and current therapy. She believes that having someone on a TNF blocker and Imuran greatly helps the patient stay in remission. So clearly she believes that the benefits outweigh the risks. Personally, I’m on the fence. I trust and confide in my doctors. But they will never fully take away my fear. I would like to know the results of longevity taking these medications. It’s common for IBD patients to eventually need to switch medications. I haven’t heard of one Crohn’s patient being on the same medication since their diagnosis. So I want to know the reports on what happens to people taking these medications long-term. Are the ones developing liver toxicity and lymphoma ones who have been on the medication 10 plus years…or those 2-5 years? Or is there really no correlation between longevity and extreme side effects? I’m sure there are numerous articles out there about Imuran and TNF blockers. I won’t give up on my research. It just really feels like the people you should get the answers from (doctors) never really want to spend the time going through details.
Food for thought…chill pill Carly. So how about those baby wipes?????

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