I had every intention of writing more this month. I wanted to write about my TennCare escapades, issues regarding age discrimination in people with disabilities, and lots of other things. I still intend to, but the truth is, I’ve been too distracted to get it done. My mind has been on only one thing: my brother’s upcoming surgery.
My brother, Isaiah, will be having surgery on December 26th. He will undergo a laparoscopic surgery to correct an intestinal stricture (narrowing) and fistula (erroneous connection between two parts of the bowel), as well as an appendectomy (because they will already be removing that part of the bowel). These defects are the result of Crohn’s disease, which he was diagnosed with a few weeks ago.
He had a colonoscopy for Thanksgiving. He’s having surgery for Christmas.
When he was born, my main concern was for his eyes. My eyes were malformed at birth, and we still don’t have a definitive answer as to why. I didn’t let myself think about what would happen if he had a more serious problem, especially after receiving my EDS diagnosis when I was 20 and he was 4.
I can’t speak fully for him, but I do know that we had some hiccups with his health while he was growing up. A slipped wrist (or elbow?) here, allergies and asthma there. Some weird skin problems. He’s stoic, so we kind of just let things go.
Over the past few years, he has had trouble keeping weight on. He has also been anemic for quite a while. We went to his doctor here in Tennessee, who brushed it off as a growth spurt. We were told he would “even out” and that some people are just very thin. If I had a dime for every time this family has been told something would “regulate” or “even out” when that wasn’t the case, I would be rich enough to buy my own medical center. I have no idea how long ago his stomach pain started; as I said, he’s stoic and doesn’t mention things until they get very bothersome.
His doctors up at Yale took him seriously right away, thank goodness. They got him scheduled for an MRI and colonoscopy, among many, many other tests. A buttload (heh) of testing and a specialist consultation have determined that he has Crohn’s disease and the structural abnormalities need to be corrected surgically.
On top of that, both my geneticist and his doctors agree that he probably has EDS as well. He’s still waiting on a referral to genetics.
These are things he’ll have to deal with for the rest of his life. Crohn’s can be put into remission, but that’s not the same as a cure. EDS is not curable yet.
I have such mixed feelings about this. Of course, I hate that he has to deal with any kind of chronic illness. On the other hand, I’m glad I can help him navigate this new part of his life.
He has an excellent surgeon, and he’s happy with his life otherwise and is eager to get past this. He has every reason to do well. I’m still nervous as hell. I’ve been dealing with it by looking at things logically and imagining myself telling everyone that his surgery went perfectly and he’s recovering faster than everyone expected.
If you’re the praying/sending good vibes type, please send lots of good stuff his way. I will try to keep everyone updated as much as I can.
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