Friday, December 4, 2015

Mystery Solved... Maybe?

Everyone loves a good mystery, except when it's a medical mystery involving your own self. It's been 2 weeks since I had my GTube (gastrostomy feeding tube) put in and developing a mystery rash across my belly that no one could really identify. The little spots covering my whole belly area are starting to clear up but then something happened - I started blistering. I thought the rash was painful, but the blisters are .... ouch. What could possibly be eating Jacob?

Yesterday my home nurse came for a visit to close my file since my mom is ok with all of the nursing, and she's pretty good at it. The nurse looked at my GTube area and she noted that the blisters are in a pattern that follows along with the movement of my GTube itself. Wherever the GTube touches my skin, I get a blister. It's so crazy that in less than 24hours the tube will actually "eat a little ditch" through my skin and be stuck to me. And that's each and every night.

We're going to test out the theory that I'm allergic/reactive to the GTube materials. We've put down a piece of Skin Protectant Tape between the tube and my skin. If no new blisters, then I'm pretty sure we can say that it's more likely to be an allergy.

My doctors often refer to me as "the mystery" because if there is a very slim chance of something happening, it would happen to me. Seriously, I'm not being dramatic. There was a tiny chance I had Crohn's and not Ulcerative Colitis as they originally thought, and it turns out I had Crohn's. Then there was a tiny chance that I would aspirate the NG Tube Feeding, and I did ending up with pneumonia. There was a <20% chance that I would develop psoriasis as a reaction to the Remicade, and I did. And there was only like a slim chance of being one of those patients who don't respond to any therapies. I'm one of those patients. And now this comes up with the GTube. I know it must be frustrating for my doctors, I know that it's 100% frustrating for me and my family. But life happens in the most unexpected ways. Hey with the odds I have, perhaps I should start picking lottery numbers for people!

I can't wait to be able to go in to the hospital and announced that I solved the great mystery of "What's eating Jacob?".

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