It has come to my attention that I have started this blog on chronic illness, but I have yet to name and explain what I suffer with. For those who don't know, I suffer from severe gastroparesis and debilitating dysautonomia along with a number of other not-so-major conditions.
In short, gastroparesis is the paralysis of the stomach muscles resulting in the inability to digest food.
For some, the immobility is slight, and their quality of life is not severely affected. For those of us lucky enough to get that short end of the straw, this condition can lead to major life adjustments such as feeding tubes and TPN. For those who fail to properly manage their gastroparesis, it can be fatal. I have been through the ringer with this condition. After trying out a new management diet and dropping 20 pounds, I was placed on an NG tube. (nasal gastric: meaning it goes through the nose and into the stomach) After that failed, I was placed on a PICC line (central catheter) to receive TPN or total nutrition. After about a week, they scheduled me for surgery to have a GJ tube placed. (gastric jejunal: meaning one port goes in the stomach and the other in the intestine) After that surgery, the tube never worked properly. It had developed a hole which required another surgery. The intestinal portion then flipped back into my stomach and required another surgery. Then that happened again. So they decided to take the J portion out. When they took out my gall bladder a few weeks later, they also placed a surgical J tube which fed straight into my intestines bypassing the stomach completely. This tube was so horribly painful that I asked for it to be removed. They did everything they could to try to make it less painful, but in the end I couldn't handle it and they had it removed. So back on the TPN I went. While on TPN, I received a Pyloroplasty. During this surgery, they cut and sewed open the valve at the bottom of the stomach to help allow drainage of food into my intestines. This was my miracle. When I was up to 94 pounds, I decided, against doctors advice, to come off the TPN and stay on a liquid diet. It was incredibly difficult and painful but I am proud to say I am managing well and am holding steady at 107 pounds.
Dysautonomia is a little more foreign to me. It is an umbrella term for all conditions affecting the Autonomic Nervous System's ability to function. The ANS regulates involuntary processes such as digestion, heart rate, blood pressure, perspiration, and respiratory rate. For me, I will be stable as I stand up. Then after 15 minutes of standing, you are lucky if I'm not on the floor and completely unconscious. This disease has sometimes left me bedridden. There is no cure and the only management is high fluid and salt intake. I am doing what I can with it at the moment, but it looks like I may need to go on a heart medication in the future.
There are a lot of people out there who have it way worse than me and I feel for them every second. Awareness is so important and is key to finding a cure for these debilitating illnesses. My only hope is that I can find some way to help others, and myself, learn to not only live with, but live despite our conditions.
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