Many of you know I have a gastroparesis. For those of you that don’t or don’t know what it is, Gastroparesis is a disease of the muscles of the stomach or the nerves controlling the muscles that causes the muscles to stop working. Therefore, when I eat or drink, I get full almost immediately and it takes me a very long time to digest my food.
If you have read my earlier blogs, you’ll know I used to be a “tubie” or a person with a feeding tube. I had a GJ tube. That is a tube that splits into 2 tubes- one into the stomach (G) and one (J) into the small intestine. I had the tubes for about 7 months. And- it was a life saver. But, I’m not going to lie, it was really hard not being able to eat anything thorough my mouth. And it was even more difficult being attached to a feeding pump.
Tube life is challenging for a lot of reasons- the obvious- THE TUBE -and the less obvious- the not eating. I had created backpacks for my pumps so that I could be mobile while “feeding”. If you ever want to feel like a freak show- walk around the mall with a back pack with a tube coming out that runs to your body in some way. It really gets a consistent response. People smile. They follow you around. And, if you make eye contact, they compliment you on something….anything. “I love your shirt”. “Your hair is pretty”. “I like your pocketbook”. Or the weirdest interaction I ever had and probably my favorite was around Halloween at Target. I had taken my backpack off because I was just feeling weak that day. I had it hooked to the inside of the shopping cart with the baby seat belts so I guess it was more obvious. A youngish woman followed me up one candy aisle. And then down another. We made eye contact. She smiled. And then it happened. She said she liked my shirt. (Of course you do!) And THEN offered me coupons. Uh- ok! Awkward! Ok, uh! Thanks! Yes, I would LOVE coupons!!
Still my fave!
Downside was the granulation tissue that formed around the stoma, or the hole. Granulation tissue is raw tissue formed when the tube moves around too much and also from the acid coming out of the stomach. It can be somewhat prevented with diaper rash ointment and special tapes. But, not fool proof. I suffered with it at least one week out of each month. It would hurt so bad even just to breathe or walk. Trust me when I tell you, it was awful.
So, I eventually got very frustrated with the process and had my tube pulled the day before Thanksgiving. I still have the condition that got me the tube in the first place so I have to deal with it still everyday. Now though, I eat solid food once a day and basically have liquids as I can tolerate.
The point of this blog? Oh yea! I had to go for testing. A Gastric Emptying Study- a GES. I have always had this done at my normal big hospital. With my new insurance I had to go to my local small town hospital. No big deal I thought. This test is a nuclear medicine study. Usually, I am given water with some radioactive matter in it and I drink it and they watch how long it takes to travel and empty. And then, I am given a sctambled egg and toast sandwich with special radioactive matter (talk about your special sauce) to eat and then same thing. (Side note- scary thing when someone brings out a heavy metal tube with a syringe inside of it that they handle with thick gloves to insert the “matter” into your food for you to ingest. Lol! Don’t worry! It’s safe!) They watch it trave for about 3 hours. This determines the delay in digestion of SOLID food. See what I did just there? Can you do me a SOLID? Lol! I do crack myself up! But, my little local hospital, yea…they gave me oatmeal. Not what I would consider a solid food. This test showed my digestion had sped up- not normal still. And I know for a fact, it has not. Oatmeal? Really? That is a soft diet food!! Even my GI specialist was like- uh, we need to redo that here.
That was a whole lot of info to get to that wasn’t it? Well, your welcome. It was a learning lesson. Consider it my gift to you. 🙂
Hope you had a happy Tuesday!
Woohoo! My life is a blog! Love and hugs to all!