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When the body revolts, with nothing to show for it.
Tuesday, 17 April 2012 20:05Having a disease is bad enough. Having a chronic disease is worse. Having a chronic disease that doesn't show any external signs can be downright maddening.
While I can happily say that I haven't had the experience of someone actually questioning how sick I am (Crohn's doesn't typically exhibit visible symptoms on the skin and such, although it can), I still find myself frustrated. If you were to look at me right now--apart from the wild hair and the fact that I've gotten skinnier, you would think that there is absolutely nothing wrong with me. Yet inside, my immune and my digestive systems have declared a war against me, for reasons that are a combination of genetic and environmental factors. It struck me six years ago without any warning at all. I'll never know for certain (unless the science of Crohn's disease is perfected in such a way that it becomes possible) what ultimately caused me to be hit with this nasty disease, but I have it, and I must deal with it.
What's been particularly maddening, specifically with me, is that the disease seems to be always one step ahead. Just two years ago, the meds I was on for years decided to stop working, and my body developed a fistula which needed surgical correction. After that, I was put on a drug that is frequently touted by doctors as one of the best medicines for Crohn's disease known to current science. A month ago, THAT drug stopped working, and here is where I now find myself, experiencing a flare-up which has caused me, to put in video game terms, to be hit by a bunch of status ailments at once, something that has never happened before--an outbreak of canker sores in my mouth, nightly fevers, vomiting, diarrhea, arthritis-like pain in my feet, fatigue...all accompanied by the usual agonizing gut pain I feel when I normally eat something that disagrees with me.
Since the initial flare-up, some of these symptoms have gone away--the vomiting has stopped, the diarrhea has tamed, and as I worked solid food back into my diet, I realized (with the return of gut agony) that my digestive system apparently can't handle more than one solid meal a day. This explains why I've lost nearly 30 pounds in the last month. My gut simply refuses to process anything more than one meal a day. I have to subsist on liquids for the rest. It's too much work for an actively-inflamed intestine.
So, since the drugs have stopped working, I'm left with really just one alternative: surgery. The surgery would remove the infected and inflamed parts of my intestine, and then the remaining healthy intestine would be sewn back together. The possible benefits? Remission of the disease. The downside? The likelihood that the disease would return at the site of the surgery. Most sources put the chance of Crohn's returning at 50%.
But what are my other alternatives? Languish and suffer in my bed and let the disease continue to progress? Or get rid of the infected parts now and enjoy at least SOME decent quality of life for a while (maybe a LONG while if I keep myself healthy)?
This is the question I face. And I must decide soon, otherwise the disease will not only consume my social life, domestic life, and end any shot at me finishing school, getting a career going, and starting a family...but will also eventually consume me.
But you wouldn't know it if you looked at me.
While I can happily say that I haven't had the experience of someone actually questioning how sick I am (Crohn's doesn't typically exhibit visible symptoms on the skin and such, although it can), I still find myself frustrated. If you were to look at me right now--apart from the wild hair and the fact that I've gotten skinnier, you would think that there is absolutely nothing wrong with me. Yet inside, my immune and my digestive systems have declared a war against me, for reasons that are a combination of genetic and environmental factors. It struck me six years ago without any warning at all. I'll never know for certain (unless the science of Crohn's disease is perfected in such a way that it becomes possible) what ultimately caused me to be hit with this nasty disease, but I have it, and I must deal with it.
What's been particularly maddening, specifically with me, is that the disease seems to be always one step ahead. Just two years ago, the meds I was on for years decided to stop working, and my body developed a fistula which needed surgical correction. After that, I was put on a drug that is frequently touted by doctors as one of the best medicines for Crohn's disease known to current science. A month ago, THAT drug stopped working, and here is where I now find myself, experiencing a flare-up which has caused me, to put in video game terms, to be hit by a bunch of status ailments at once, something that has never happened before--an outbreak of canker sores in my mouth, nightly fevers, vomiting, diarrhea, arthritis-like pain in my feet, fatigue...all accompanied by the usual agonizing gut pain I feel when I normally eat something that disagrees with me.
Since the initial flare-up, some of these symptoms have gone away--the vomiting has stopped, the diarrhea has tamed, and as I worked solid food back into my diet, I realized (with the return of gut agony) that my digestive system apparently can't handle more than one solid meal a day. This explains why I've lost nearly 30 pounds in the last month. My gut simply refuses to process anything more than one meal a day. I have to subsist on liquids for the rest. It's too much work for an actively-inflamed intestine.
So, since the drugs have stopped working, I'm left with really just one alternative: surgery. The surgery would remove the infected and inflamed parts of my intestine, and then the remaining healthy intestine would be sewn back together. The possible benefits? Remission of the disease. The downside? The likelihood that the disease would return at the site of the surgery. Most sources put the chance of Crohn's returning at 50%.
But what are my other alternatives? Languish and suffer in my bed and let the disease continue to progress? Or get rid of the infected parts now and enjoy at least SOME decent quality of life for a while (maybe a LONG while if I keep myself healthy)?
This is the question I face. And I must decide soon, otherwise the disease will not only consume my social life, domestic life, and end any shot at me finishing school, getting a career going, and starting a family...but will also eventually consume me.
But you wouldn't know it if you looked at me.
