You Know Your Body Best – Part 1
I have been wanting to tackle this topic for a long time but there is a reason I have held off on discussing it. Mainly, it is because of how emotional it is for me to think back and reflect on how things progressed when I was diagnosed almost 17 years ago and how much has changed since then. There is also a lot to say regarding this topic so I wanted to break it up into two separate articles to make it a little easier to read and understand.
For those of you who don’t know my story very well, I want to briefly recap for you:
I was diagnosed with ulcerative colitis at the age of 13. I tried every medication available to me but the only ones that seemed to keep me in remission (or at least be able to manage out of the house) were prednisone and Remicade.
For those who are unfamiliar, prednisone is a fantastic drug for controlling symptoms and bandaging them rather quickly. When my hemoglobin dropped to 4 (the infusion number is generally 8), it became a matter of life and death. My doctors needed to stop the bleeding NOW and there was no time to waste. I also want to throw in that while I did call prednisone a “fantastic drug” and in a lot of ways, it is, it is also known to some as the devil’s tic tak. There are other articles on this site that explains why so if you are interested in learning more, I highly suggest you read the following article here…
At 14 years old it seemed like if I wasn’t going to commit to being on prednisone the rest of my life – which is NEVER recommended or even an option as the long term side effects are too great – I would need to have my colon removed. I met with the surgeon that my doctor recommended who was the head of pediatric surgery at my hospital. He was very kind, calm and also worked with a nurse practitioner who was incredibly warm.
Following that colonoscopy, I was re-diagnosed with indeterminate colitis…
which meant that I definitely had a form of inflammatory bowel disease (IBD) but it was unclear if I had ulcerative colitis or Crohn’s Disease. The location looked like UC but the pattern of sores appeared to be Crohn’s, according to my GI at that time.
Following my colonoscopy, my GI talked to my parents and me about Remicade. As a side note, my parents are very against medication. Not to the point where they didn’t follow doctor’s orders when I was very ill but their overall mentality was that of “natural supplements are always the way to go.” Anyway, given both my parents and I agreed that surgery was an absolute last resort, I began Remicade while I was inpatient. I had been there for over two weeks by that time, had two blood transfusions just during that particular stay, and was in very bad shape.
After my first Remicade infusion, I was a new person.
I went from not wanting to eat anything (I was on TPN because of it) to asking my parents for food. I remember my parents looking at each other and wondering how I could make such a miraculous “recovery.” I was able to begin school on time and since I was entering a new high school sophomore year, I was very glad to be starting the year out with everyone. It was challenging enough being the new kid at a school where most people knew each other since kindergarten but the thought of starting late (like the previous year) was really hard to swallow. I was also able to get back to competitive swimming which was my passion and something I was involved in since the age of 7.
Fast forward about a year and I began developing antibodies to Remicade.
As a side note, I know plenty of people who have had wonderful success on this medication for over a decade so please remember that we are all different and just because that happened to me, doesn’t mean it will happen to you! IBD is so individual so I hope this does not worry anyone who is currently on this medication.
It was then that I had officially failed off all medications indicated to treat me and it was time for me to have my first surgery. At the insistence of my surgeon once again, another colonoscopy was performed about a week prior and my diagnosis changed back to ulcerative colitis (UC).
From that moment on, I was told by the surgeon, his nurse practitioner, AND my gastroenterologist that I would be cured.
I vividly remember them telling my parents and I that I would have my colon removed, a J-pouch would be made out of my small intestine which would take the place of my large intestine, and I would go about my merry way as though ulcerative colitis never entered my body or life.
We were all so hopeful after hearing that. It seemed like I would have a rough recovery but once that was all over, my family and I would be able to move on with our lives without worrying about inflammatory bowel disease ever again.
Immediately following my surgery, I had an awful wound infection where my surgeon’s resident had to re-open my incision at my bedside…with no anesthesia or pain medication. I was screaming and crying but according to my surgeon, it had to be done. I was spiking incredibly high fevers and things were just very off. This made it so I had a huge hole in my stomach for months, which needed to be taken care of and packed by a visiting nurse who ended up coming once a week for a number of months.
As months went on, I still never felt well…
My doctors initially contributed it to the stress of the wound infection on my body. As time continued and I was still losing weight, not thriving, and generally feeling terrible, my GI began telling my parents I developed an eating disorder.
After begging my parents to reach out to my surgeon in the hopes that he would take me seriously, he ordered a CT scan and I went right from the test to a procedure room where they drained a ton of abscesses. It was also discovered that I had a fistula very high up in my J-pouch. When my dad told my GI about this after she came into my hospital room, her response was “hm” and she walked out never to be heard from or seen again.
Long story short, I ended up becoming septic…
I was on IV antibiotics for 10 months under the care of an infectious disease specialist, and had three more operations in an effort to correct this problem.
This threw my parents and I so much because we were all under the impression that I would be cured!
Before this becomes even more of a novel, I am going to cut this story off right here and continue in part 2. The second part of this article will explain just how much the “cure” word destroyed my family and me – and in a large part, still does to this day.