Monday, February 8, 2016

My Feeding Tube Story

When was the last time you ate?

Since last night was the Super Bowl, I'm guessing for most people that's your answer. But the reality is that as simple as this question is, for many people, the answer is not so simple. When I'm asked that question, I'm not really sure how to answer.

If they mean solid food, it could have been weeks or longer. If thick liquids count, maybe days. If they mean tube feeds, then I'm probably running them as we speak. And then there's always the minor detail of whether or not I actually kept down any of what I ate orally. 

My first feeding tube was placed a year ago. It was an NJ tube that went through my nose into my intestine. It bypassed my stomach because my body had started to interpret digestion as an allergic reaction, and I was going into anaphylaxis just from eating. 

In the first 6 weeks of 2015, we made 7 ER trips and had one overnight admission just from me trying to eat. Something as basic and necessary as food was becoming a life-threatening situation. Put yourself in the position of knowing that every time you ate, you were at risk of anaphlyaxis. Doesn't matter how many times it happens, the feeling of not being able to breathe and having to stab myself in the leg with a 2 inch spring-loaded needle never gets easier.

The plan was for me to have the NJ tube for 6-8 weeks and in that time, find some treatment that would calm my mast cells and transition back to eating. As the end of those 8 weeks approached, though, it became clear that I was still not able to tolerate solid food or "normal" eating. In April of 2015, I had surgery to place a "permanent" feeding tube directly into my stomach.

My current tube is a PEG-J tube. It enters my body through a hole in my stomach below my ribs on my left side. I actually have 2 tubes (G and J) with the smaller tube running down the inside of the larger tube. The larger tube (G tube) goes directly into my stomach. This tube I can use to relieve pressure, and if needed, drain the contents of my stomach to help reduce vomiting and decrease the effects of my gastroparesis. The second tube (J tube) is about half the size of the G tube and runs through the stomach into the middle portion of my intestines. I run my feeds into my J tube. This allows me to bypass the most problematic areas of my GI tract (my stomach and top portion of my intestines) and still be able to receive the nutrition I need.

When I had my first feeding tube placed a year ago, I felt defeated. I spend so much time fighting my body just to be able to function, and it felt like giving in. When we had to make the decision for me to have surgery for my PEG-J, I was scared. It was never supposed to get to that point. The NJ tube was supposed to be temporary, and then I would be back to eating again. Instead, we were looking at a more permanent option since things didn't go as planned. I was scared what that meant for the future. At that point I didn't know if I would ever eat normally again.

Today, I still don't know when I will be able to eat normally again. But I can say I am thankful for my feeding tube. After I had the NJ tube placed, the ER visits and anaphylaxis were much less frequent. I stopped losing weight. I didn't have to force myself to eat knowing the pain and nausea and vomiting it would cause. I didn't have to sit at the table with an epi pen in my hand "just in case."

My feeding tube gave me so much quality of life back. I had more energy. I could enjoy short outings when before if I wasn't horribly sick, I just didn't have the strength. My weight is not longer critical, and I can receive the nutrition I need even when I'm unable to eat anything by mouth. I was able to go on a cruise with my family to Alaska. If I hadn't had my feeding tube, there is no way we could have risked that.

Don't get me wrong, I LONG for the day we can remove Herman (my feeding tube) and I only have a scar to remind me of this season of life. There are days that are painfully difficult to be unable to eat. My pain and nausea and vomiting are not gone entirely, but much more controlled and less completely debilitating. I can get severe pain where my tube enters my body when I have abdominal swelling and the bumpers holding my tube in place compress the wall of my stomach. There are days I just want to rip Herman out of my body and throw it across the room. I still have moments when I am in so much pain I can't move and so sick I can't even take my medications.

But I am thankful. Thankful to live in a country where I have this option. Thankful to have doctors who are doing everything they can to help me even when they don't fully understand my body. Thankful for modern medicine that is keeping me alive. Thankful for my feeding tube.

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