Graduation day! That’s me and my dad, who passed away in 1998. Helloooo prednisone moon face on me.
After my first colonoscopy and my diagnosis of ulcerative colitis, I spent about 40 days in the hospital. I was a junior in high school, so that whole situation had to be dealt with. Thankfully I was a good student, and when it was time to deal with homework and missing class, I was able to cope with much of it.
I had great teachers in high school — for the most part. Continue reading
My first colonoscopy took place at the hospital, so immediately after it was over, I was taken upstairs and admitted. Now, I’d never been sick in my life: being treated with antibiotics for a rash a few months earlier and chickenpox when I was 12 were the only other two times that I received medical care. This, of course, was on a completely different scale. I was taken upstairs to the pediatrics ward.
The first — and only — book available to me when I was diagnosed at the age of 16. It was small, short, and didn’t contain much current information.
Here’s the thing about being in peds as a teen: you’re not a small child, so much of what goes on there doesn’t help you. The staff is used to dealing with common childhood illnesses, and while IBD is not rare, I’d venture to say they didn’t see it very often. In the small community hospital where I was treated, I actually saw very few other children. Once a classmate was admitted for appendicitis and an appendectomy. She, of course, left after a few days. Other than that, I saw mostly young adults in the pediatrics ward. Maybe our community just had healthy kids, or kids who needed specialized care went into Detroit for Henry Ford, or down to Ann Arbor for the University of Michigan.
Between the time when I was misdiagnosed and the time I received an actual real diagnosis, I had my first appointment with a gynecologist. At this visit it was discovered that I had a urinary tract infection. I was put on antibiotics (again, I don’t know what the exact drug was), which was probably not the best idea for my gastrointestinal tract, though the infection had to be stopped before it could cause further damage. I would go on to have many, many urinary tract infections over the years and have seen several urologists, who can find nothing physically wrong, and can only prescribe more antibiotics.
Before even seeing me in the office, the first thing the gastroenterologists wanted to do was a colonoscopy. By this time, I had constant diarrhea. It was always bloody, and at times it was nothing but blood. I remember doing nothing but going between my bedroom and the bathroom, all day and all night. Continue reading
Before I was diagnosed with ulcerative colitis, I can’t remember ever having a bowel movement. That’s how unmemorable my digestive system was. I don’t remember having diarrhea. I don’t remember being concerned about how what I ate would affect my digestion. I don’t remember ever having discomfort or even throwing up.
And So It Begins…
When I was 16, however, and starting my junior year in high school, that all changed. The blood in my stool came first. It may have been going on for some time before I even noticed it (again, I don’t ever remember thinking about stool before). When I did notice it, I had no idea what it meant. It went on for a few days before one morning I told my dad what was going on. He called out of work that morning and took me to the prompt care at the local hospital. Continue reading
I don’t know how it happened, and maybe the origins are lost to the sands of time, but someone somewhere decided that a colectomy was a cure for ulcerative colitis. This idea made it into books and pamphlets for patients, and now is taken as canon by inflammatory bowel disease (IBD) advocacy groups. Recently, however, there’s been some pushback on this idea from patient advocates.
What Does This Word Mean, “Cure?”
Personally, I have never felt that “cure” was the correct word to use for the removal of the colon. For people with ulcerative colitis, removing the colon may signal the end of some symptoms, including inflammation, fever, diarrhea, and pain. Without a colon, there are several options available for the solution to the question of “how does one poop?” The most popular one is a j-pouch, whereby a pouch shaped like a “j” is created from the terminal ileum, and sewn onto the rectum. Continue reading