Hello to All

Today is the first day of writing for The Crohn’s Cronicles. I have already done several hours of planning, but the fact remains that nothing will ever get out there unless I actually write it. The supportive community which I envision will not take shape unless I start putting my own struggles out there. I have already been to the bathroom three times this morning, twice with diarrhea, and heaven knows I need comfort and reassurance.

I don’t know what to say…when it comes down to the wire, I clam up, That’s when I start telling myself again that nobody cares about what I have to say, that I am being self-centered by trying to create a supportive online universe. Then I notice the same old problem—I am setting my sights too high and trying to mirror the scene in Amadeus when Salieri is amazed by holding Mozart’s flawless, FIRST DRAFTS of music, masterpieces as they came out of his head. To the writer, in-head writing is always flawless, on page writing is usually crap.

Where to start?

I am 23 years old, and what my GI said will likely be the first of several bowel resections on October 22 of last year. 23. I have already had jaw surgery, the removal of several teeth, gallbladder removal and a week-long stay in the youth psych ward for severe anxiety and depression. I know well the smells of hospitals, the sights of their long and depressing halls, and have had many *interesting* ward-mates. Need I say that I hate hospitals?

What scares me most is what may come in the future. My whole journey with bowel trouble started one night at the end of August last year, when I woke from a sound sleep with searing, unbearable pain in my abdomen. It was similar to the pain I had with gallstones, but since I had my gallbladder taken out in 2006, I had had no further problems on that regard. After spending a while in the emergency room and having tests, the doctor said I probably had a virus, and sent me home with instructions to rest, and come back if the pain lingered. A week later, back in emerge, I had an MRI done and its results showed that I had a 2-or-3-inch-wide abdominal abscess. I think the first time Crohn’s was mentioned was when I was waiting to have a needle inserted into my abdomen to drain the thing. Mentioning an incurable disease to a scared, crying, young person waiting to have a bag attached to her person—nice move, Surgeon.

Although he had no way of knowing, of course, the only real experience I’d had with bowel disease came from my grandfather, the father of a high-school friend, and a college classmate. My grandpa had a colostomy inserted after dealing with colon cancer, and with any mention of a drainage bag I connected myself to him, and the kind of life being elderly brings. My friend’s dad had many surgeries to deal with his Crohn’s and as far as I know, is still struggling with its effect on his life. My college friend missed a lot of school because of his, and followed a strict diet. My diet is a constantly changing thing, and something I eat without problems one day may cause a lot of time spent in the bathroom another day.

As I learn about my disease, I learn that it quite commonly appears in late teenage years to the early thirty-somethings. And yet, I am finding it surprisingly hard to find candid, first-person accounts from those who share my struggles. I value the input and information gleaned from people I have spoken to thus far, but I would love to hear from more people closer my age, and not just the age of my parents. I imagine this would help me not feel quite as alone. Hopefully, when reading my blog, other young people will realize that they are not alone either.

 

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