Advocacy

I had a moment where I wasn't sure what I wanted to say. I have been busy trying to get back into the workforce. I have been finding it difficult because there is gap in my resume. I was dealing with chronic small bowel obstructions for almost a year and then the following year I was dealing with bloodstream infections. I was broken mentally and physcially, I needed to get to a positiong where, I was alright mentally, and physically. I told myself I would never try to go back to work if it meant immediatly I had any threat of a hospitalization. So here I am now and I feel good and confident. I have figured out how to manage things and make it work for myself. It was difficult but I got here.

I realized the only way I figure out to get here was I advocated for myself. I knew there was an issue and kept pushing and pushing. I contacted every doctor I knew and I said this wasn't normal. When I was in college and groiwng up I had in total three bowel obstructions. I recall one when I was about 8, another one after I had went to a rodeo when I was 13, and finally again when I was 20. Bowel obstructions are very rare typically. I take the longest to eat because I am chewing my food down to a paste to make it easier for me to digest. Typically I eat whatever I want and I just stay aware of the "hard" to digest foods (eg. corn, nuts, leafy vegetables). I sometimes feel like a horse grazing on wheat. Sometime in 2021 everything changed and I kept waking up in the morning after I ate a heavy fibrous meal and I would get these abdominal cramps. I knew to rub my stomach and to take a hot shower but I noticed my stomach would get extended and the cramps would get worse. I tried to manage it at home for a day or two and I could no longer manage the pain I would tell Lindsey we needed to go to the Emergency Room.

I believe I went to the ER about 8-10 times that year and I finally told my doctor I had enough. I was no longer living the life I was hoping to have. I told them multiple times this wasn't normal. I finally found out that stomas can have strictures. That was completely new to me at 35 years old. My mom mentioned that stomas can fail but she never mentioned that I had to worry about a stricture. I ended up needing an ileoscopy, which is similar to an endoscopy, but instead of the scope going through your upper GI tract, it goes through the opening of the stoma. After completing my first ileoscopy, there were two strictures, and they put a balloon to open it.

Ironically after having the ileoscopy, you would think that would be it, and I would be able to move on. I wasn't that fortunate, one of doctors and I joke about what can go wrong or what isn't expected to happen, willl happen to me. Ironically that happened to me, and the strictures came back. I remember sitting in the shower and thinking that it didn't take. My wife and I went back to the ER and had conversations with my surgeons. Went through the process again and this time I had to do it alone. I was completely alone because we were dealing with the height of COVID. I had to go through another ileoscopy this time alone and they ended up having to put a stint in my stoma to keep the opening open. I am fortunate to have a good team and they helped keep me at ease and kept me comfortable during the process.

Look I know it's hard to stand up for yourself in today's medicine. I know that doctors are constrained by insurance policies and case workloads. I also know in this day and age though sending a message to your doctor to make them aware of what is going on isn't difficult with the modernization of medicine. Remember you have to push it, be responsible, make them aware there is an issue, and keep addressing it until it is addressed in the way you want it to be addressed. Be able to workout a compromise because you may not get what you want, be flexible, and understanding. Set the outcome and what you are hoping to get out of treatment. For each visit I have I have an expectation and I go in hoping that it will be treated right away. Just sometimes it may take time to get the answer. Thats when you have to stay on top of it and message your doctor and ask questions if there isn't movement at a respectable time. Your time is just as valuable as theirs and you want answers as quickly as possible.