Friday, March 5, 2010

Hi Ted, meet Crohn's disease - Relapse and the Future

Continued from yesterday's post...

Relapse. Everyone that suffers from Crohn's and colitis fears it. It's the point in time when you go from feeling fine to feeling like crap, and it can happen in what seems like a flash.

My last relapse was this past January, and I went from normal to crippling pain in about 24 hours. My co-worker had recently quit making me responsible for her share of work so I was stressed out, I hadn't been sleeping well, I hadn't been exercising like I normally do, and my diet went down the drain because I had been busy. Not realizing it at the time, but that's a recipe for relapse. Stress + lack of sleep + general inactivity + bad diet = relapse. When I had some initial symptoms and I knew immediately it was going to be a long weekend. Of course it had to happen over a three-day weekend with MLK, Jr. Day and all, and of course I had to wait until Monday to hear back from my doctor about what I should do. I probably could have pounded a few prednisone and gotten through the weekend alright, but he had mentioned to me the possibility of getting a barium X-ray. My last gastro didn't have me get one because she only wanted to do the colonoscopy, but the barium X-ray can give at least have given me a good picture at how extensively my small intestine is affected during a flare-up.

So there I was, curled up in bed, crippling in pain from abdominal cramps every ten to fifteen minutes or so, losing weight drastically fast because I couldn't handle eating anything. The pain was almost like I was back on Asacol again, which I explained before was a complete nightmare. All I could think was, “What the hell is happening to me? Why won't this just stop?” I was practically living in the bathroom going up to 15 times a day. Even though this was stressing me out even more, I knew that I had to just try and stay calm until Tuesday when I could get in contact with my gastro.

When Tuesday rolled around the first thing I did was call my doctor, who just told me to go ahead and start the prednisone. Thank God! I ran to get some water and instantly pounded some pills the instant I hung up the phone. Relief at last! It was just going to be a matter of time after I took those pills that I would start feeling better. But it really took me about a week to get back to near-baseline. It was the longest week ever. Over the next few weeks I started tapering off the prednisone from 40mg/day down 5mg/day every week. I got all the way down to 15mg/day when, unfortunately, symptoms started coming back. I thought a mild amount of profane words to myself and started myself back up on 20mg/day for a week, which leaves me at where I'm at today. I'm still getting abdominal cramps without warning, and after a week on 20mg/day they're still not getting any better. Looks like I get to call the doctor tomorrow and see if he wants me to go back up to 30mg/day or all the way back up to 40mg/day. I'll just have to wait and see. My guess is that I relapsed during my taper because I was tapering too fast, but we'll have to see. I just hope that I can get it under control soon so that I can just get back to feeling normal again.

All in all, my relapse has only served to remind me that this disease is for real, and it's not going away anytime soon. While remission can last indefinitely, relapse is just around the corner to sucker punch me in the gut. So as I look to the future there's a lot to think about. I mean, I have to think about my stress levels, my diet, staying active, and all that good stuff. I also have to think about being more or less prepared for a relapse in the event that another one happens. But I also need to think about how I'm going to live my life with a chronic disease. I personally want to keep staying active and pushing myself to the max in everything that I do, whether it be my upcoming MCAT, work, my future MD-PhD training, or training for the 13.1 Boston this June, I don't want to slack off in any of it. But now I just need to be more responsible and careful. I need to learn how to let myself take a break and relax when my life gets busy. I also need to learn to appreciate the times that I spend in remission just a little more, so that if and when I relapse that I won't feel like I'm missing out on life.

But the future also holds a lot of hope, and the foundation of that hope lies in Crohn's and colitis research. There are always developments being made, whether it be in understanding how these diseases arise and how the progress to drug design and development. If the advances that have been made in the past few decades is any indication of what's to come, then I think we have some good things coming our way. Better therapies, better surgical options, and potentially even a cure. I can't imagine what that day when a cure is discovered will be like should I live to see it. I mean, over the past year and a half I've grown accustomed to living with a disease. I'm reminded of my condition everyday by the six to ten pills and supplements I take every morning. I just can't imagine what it would be like to suddenly have all of that just stop and go on living a normal and healthy life. Quite honestly it would be unbelieveable. I can only hope that that day comes soon enough.

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