Friday, January 8, 2016

It's Just Me and My Mickey

I spent the day getting to know my Mickey yesterday. No, I don't mean this guy:

Although I'm sure that spending the day with this guy might have been a bit more fun. Nope, my picture of Mickey is altogether different. I'll spare you that picture for now (at least until it's healed a bit more). I'm sure that the majority of you are really confused right now, so let me explain what the dickens I am talking about.

Last February I had to start on getting the majority of my calories through a feeding tube. This barbaric contraption that I loved to hate was put up my nose and into my stomach, since I had problems breaking down and absorbing nutrients, putting on/keeping on weight, and was vomiting daily (still am). I received ALL of my nutrition only through the tube from February to June and have been working on trying to rediscover foods since then - it's going horribly wrong. Food and me just have a difficult love-hate relationship. I love food, I want to eat food, but my body doesn't like me having food. It throws it's own form of an anti-food protest and I end up it's main victim. It sucks. Our society is so focused and based on food, I challenge you to name a holiday that doesn't involve food. Can't do it? Exactly. Now name a television channel I can watch without any reference in the shows or the commercials to food. Can't do it? Now you're beginning to see my pain. Everywhere I'm reminded of food. That's the worst possible thing you can be reminded of when all you want to do is hang your head over a bucket. And the holiday season? Let's just say that I think we need to create our own traditions that have nothing to do with food. So obviously, we have a problem.

The solution? Long term supplemental feedings that could be increased back to EEN (exclusive enteral nutrition) where all my calories could potentially be through the tube again if needed. There has been some evidence to suggest that the formula that I am on is beneficial to healing in Crohns Disease as pretty much a treatment itself, but they are unsure of why this is the case. However for some other people like me, who haven't gotten results from medications, elimination diets, etc, they have seen that sometimes a prolonged period of EEN helps to promote the healing. They did a set of scopes right before they did the EEN, and then re-scoped afterwards. Prior to the EEN, some of the doctors on my team were considering the potential of having my duodenum (first segment of the small intestine) removed, a major surgery with potential life-long complications. It's a surgery that none of us Crohns patients would want to have, even more so than the colectomy. But at that point my duodenum was a HUGE problem. When they re-scoped after the EEN feeds, the majority of the deep ulcers showed significant improvement. We were nowhere close to being in "remission" but it was at least a step in the right direction. So to continue with long-term nutrition, they decided that I needed to have a more permanent feeding tube put in, called a gastrostomy (GTube).

True, the GTube gave me back my face which had been covered "Phantom-of-The-Opera" style with medical tape to hold my NG tube in place. I had the GTube inserted November 19, and if you've been following my posts, you'll remember that I posted the "What's Eating Jacob?" story when an allergic reaction to the tube caused blistering, swelling, and internal bleeding. It was a painful time I'd rather not have to repeat at any point in my life.

Yesterday they finally swapped out the old GTube I was allergic to and put in a Mic-Key button tube. The experience was...interesting. I'm a kid who even after probably at least a 1000 blood tests in the past 3 years, needs their mom to shield their eyes from what the blood nurse is doing. Well, when they took the Mic-Key out, I got a good look at what the hole into my stomach for the tube looks like. I wish I could turn back time and wear a blindfold. Then the nurse has to measure by inserting a flexible measuring tube. She said that I have one of the longest tube "tracts" that she has even seen. The distance between the surface of my skin and my stomach is 5cm. It just so happens that the Mic-Key tube button, is only designed for tracts that are 5cm long or shorter. If I add more weight, I might not be able to have this particular design model. In any case, after much pushing to get it in through the stomach hole, it's in.

I was terrified yesterday. I didn't want this done, especially since I was really afraid of being awake for the procedure and it hurting. But I can tell you that it wasn't near as bad as I thought it would be. Yes, it hurts as they're trying to insert the new tube. You feel them really pressing down on your stomach to get it into place. It feels weird sometimes because since it's only being held by a water filled balloon resting on the inside of the stomach, you can feel it shifting. But after the first 30 or so minutes it gets easier.

As for the hanging out with Mickey, I'd still prefer the mouse guy but maybe this other Mickey won't be that bad.

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