All of us who live with chronic illness know understand the difficulties of working in all the appointments and procedures. Even when doing OK, there’s a list to get through every year. Now with being over 40 years old, that list also continues to expand.
Do you worry that inflammatory bowel disease (IBD) will get in the way of finding a romantic partner? Crohn’s disease or ulcerative colitis can make dating challenging but they can also simplify it. It becomes clear pretty quickly if a potential partner is going to struggle to cope with chronic illness. This episode focuses on communication, as Amber and her husband, Mike, discuss how he reacted to his first introduction to ulcerative colitis and why it’s important to check in with your partner before discussing IBD outside of the relationship. After more than 20 years, they finally put an incident of miscommunication to bed, and Mike gives his tips on being a supportive partner.
I was fortunate to see The Matrix on its first run in theaters when it came out on March 31, 1999. We knew little about the movie at the time, only that it was science fiction and it looked amazing and that we would want to see it on the big screen and not later on VHS (DVD was not yet mainstream). The movie came out only a few weeks after my first of two surgeries to create my j-pouch (or IPAA, ileal pouch-anal anastomosis) to treat ulcerative colitis (which is one form of inflammatory bowel disease, or IBD).
I love The Matrix, and how could I not? It contains so many narrative aspects I enjoy, including science fiction, robots taking over the world, an unconventionally beautiful and lethal female character, and a kick-ass soundtrack. To be honest, there are a lot of things about the plot that don’t hold up to serious scrutiny. But that’s fine, it is still amazing and undeniably groundbreaking in both storytelling and technical aspects.
When The Matrix opens, the watcher has no idea what is going on. This is my favorite way to be pulled into a story: absolutely cold, with no frame of reference. There’s no exposition; the narrative plunks you right into this universe that works differently than the one you know. You have to make a decision right then and there, if you are all in and if you’re ready for the filmmakers to take you on the ride and teach you about their world. For me, it was my first time being out of the house and enjoying myself after having surgery, and I was so ready for the journey.
(Mild spoilers for The Matrix are contained in this article, so if you haven’t seen it, or haven’t seen it lately, go watch it now. I mean, how can you exist in the world and understand what other people talk about without having seen it?)
I’ve made many mistakes along my disease journey. The first, and most dangerous, was to believe that my fate was already sealed. This post was sponsored by AbbVie Inc. Personal opinions and thoughts are my own.
Crohn’s and Colitis Awareness Week is December 1-7. If you have Crohn’s disease or ulcerative colitis, get tips from gastroenterologist Dr. Corey Siegel, a Crohn’s disease and ulcerative colitis expert, by visiting the online Expert Advice Tool before your next trip to the doctor’s office.
When I was 16, I was diagnosed with a disease I’d never heard of called ulcerative colitis. Approximately 700,000 people in the United States are affected by ulcerative colitis – a chronic inflammatory bowel disease (IBD) characterized by inflammation of the large intestine (colon and rectum). It is not caused by food or a contagious disease.
My first gastroenterologist came to me by circumstance. I was referred to a different physician in the same practice, but when I needed to get in sooner, he was the one that had room in his schedule to do my colonoscopy. He was the one that diagnosed me with ulcerative colitis, and sweated over my case in those early days when I was struggling to hold on to my colon.
At some point after we’d managed to turn things around and I finally stopped bleeding, I came in for a follow-up to his office. I’d been on a low-fiber diet for quite some time, because that’s how treatment went in those days. I’m sure I felt deprived at times but I remember mostly being grateful that I could eat at all. In the hospital I received nutrition through an IV and could eat no food, so even soft low-fiber foods were a step up. I’m sure I wanted a green salad, but a steady diet of turkey and mashed potatoes was the thing that was going to put the 20 pounds I needed back on my body. Continue reading →
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.
Dr Rumack: You’d better tell the Captain we’ve got to land as soon as we can. This woman has to be gotten to a hospital. Elaine Dickinson: A hospital? What is it? Dr Rumack: It’s a big building with patients, but that’s not important right now.
The first time I was hospitalized, I was only 16. I’d never been in the hospital before, though of course I had family members who were, so I didn’t really need a primer on being an inpatient. However, what I could not have been prepared for was the people I met while on the inside.
I’m not speaking of doctors. Or nurses. Of whom I met plenty, of course. What I’m speaking of is roommates.
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 →