By Michael, Jejunal atresia, United States, February 17, 2018
I have been in pain to a varying degree every moment of my life. Here is my story.
I told I was born w/a Jejunal atresia in 1979. Because of that, I had surgery on the 1st day of my life. It caused a large horizontal scar on the right side of my abdomen. On the other side I have a bullet hole looking scar as well as scar on my forehead that was used for tubes. The 1st couple days there was a chance I could die, but I survived.
After 3 months I was released. I did need to be hospitalized 8 more times over the next 2 yrs due to stomach issues. Then they told my family there would be no more issues, and life would be normal. I am the eldest of triplets, and we were 5 and half weeks premature. As a kid I always had stomach problems but I was always told I was in pain because of something I ate. It was never major enough that I had anything that I had anything to make me think it was because of the scars until shortly after I turned 17, Aug. 96'
Then I started feeling really sick to the point I have never stopped complaining about it to this day. We asked if it had to do w/Jejunal atresia. They said no. I had 3 months of Drs vists and tests. They didn't find anything despite doing lots of different tests and thought it was unhealthy to do more x-rays. They told me I must be stressed. I asked if I would ever need surgery or worse, and they said never.
Little less than a month later, I had a obstruction. Well actually I had 5 days where the pain increased to the point I was walking half bent over in pain and had difficulty sleeping. Drs told me to take 2 tylenol and a heating pad. I obstructed on the 5th day. I end up hospitalized for a week. I weighed 120 pounds having lost 35 pounds since I 1st complained.
I was told I need another major surgery to remove more of my small intestine. The surgeon said I would always need this surgery due to the 1st surgery. They said I was partially obstructing and that is why no tests worked. They said surgery would be 2 and half hrs and it actually 6 and half hrs. The additional time was due to adhesions. I was in and out of hospital for about 6 total weeks during that winter.
The surgeon wasn't sure when I would obstruct again and need another resection of my intestine though most likely not for a long time. They said I would be ok, but the pain never went away, and out of control intestinal issues, which they soon called bacterial overgrowth. I never know when it will happen.
I went to a bunch of Drs over the next few yrs and took dozens of medications that made me sicker so I stopped taking them. My biggest fear was to obstruct again. I understand that adhesions were a problem so I went to a laproscopic surgeon to get them removed to avoid obstructing. Instead he sent me to a pain management clinic where they gave me patches of fentanol. I never tried them due to previous medications making me sicker. 1 of those was propulsid which was taken off the market.
By 2013 the adhesions caused a incisonal hernia. This was never mentioned as a possibility. This was the exact place I complained about all those yrs. The pain didn't change though. Pain always affected my sleep. Now it does to the point I am awakened by pain at 4 to 6 every morning.
I had begun to do research on internet about my illness. I read on the National Institute of Health website that Jejunal atresia is a rare disease/genetic disorder/birth defect/congenital malformation. Not sure what all that means but wish I knew that growing up. I now know at birth I obstructed and had hernia. Day 1 was a surgery called proximinal jejunal atresia and hernia repair. Drs also called it a apple peel atresia since that is what it looks like.
I read I am a medical myth because at the time of my surgery Drs believed babies didn't feel pain. Before 1986 it was acceptable to performed that day 1 surgery w/no anesthesia or painkillers just a paralytic (most likely curare) to keep me quiet and still. According to Dr. Tinnin, this caused complex non verbal ptsd and symptoms like anger and constant anxiety which have been w/me my entire life. I guess my body knows things I can't articulate while I still feel the effects this day.
In 2001 State of New York recognized Adhesion Related Disorder (ARD). ARD is reason I have always been in pain. Adhesions are scar tissue. I am unsure why surgeons don't warn people about this. I was told I have nerve damage from the surgeries, bacterial overgrowth is now or maybe was always called Small Intestinal Bacterial Overgrowth (SIBO). I am missing parts of my small intestine. The primary function of the small intestine is to absorb nutrients. Due to this I am deficient or low in B-12 and other vitamins. This affects mood. I also wonder if this is why I have usually been much colder than other people.
Drs seem to think unless a person is missing more than 50 % of their intestines (Short Bowel Syndrome recognized in 2005) they work ok. I disagree. I read a study that wonders if I can absorb medication. Maybe that is why they always made me sicker, I can't fully absorb them. But there is no rare disease Dr. just internet research where I figured out most of what I have. I have to add 1 I believe I have Partial Bowel Syndrome.
I did find a medicine that helps me to reduce my pain (no cure) and can absorb. Society has been treating the thing that helps me most as a crime, which made it much harder to use. While Medical Marijuana, is somewhat accepted not enough Drs, places to legally use it, or insurance willing to pay for it, ect. But hey I won't go to jail at least. I smoke it. That is why I think absorbs better. Being more aware I have drastically changed my diet though I am not sure what actaully digests well.
It is improvement on 1st 30 something yrs of my life. I haven't lived like a normal person. I have been surviving a rare disease my entire existence w/out recognition. Much more research than my internet searches are needed if progress is the goal. No longer will I be denied who I am. As my new shirt say I'm aware that I am rare!