If you have inflammatory bowel disease (IBD), or you love someone who does, you don’t need an awareness day to tell you the impact it has on your daily life. People living with Crohn’s disease or ulcerative colitis and their caregivers already have a vast education on IBD that can only be gained through experience. World IBD Day isn’t really for you.
The healthcare space isn’t a level playing field. Minority populations face complex challenges when it comes to accessing and receiving care, which is why April is designated as National Minority Health Month. In regards to inflammatory bowel disease, it’s not well known that Crohn’s disease and ulcerative colitis also affect minorities. Shawntel Bethea of Chronically Strong and Brooke Abbott of The Crazy Creole Mommy Chronicles discuss how they’ve been affected by healthcare disparity and offer concrete ideas on what can be done to start addressing healthcare gaps in their communities.
Take a journey back to 1999, when cellphones were a rarity, dial-up internet access was still in use, and Amber had her first surgery of the 2-step j-pouch process. Amber’s husband Mike, a writer and communicator, journaled his thoughts on the day of the surgery. This journal was recently uncovered and Amber reads it to Mike and gets his reactions and further recollections of that challenging day.
Many people with inflammatory bowel disease (IBD) will admit to having a body image issue. The research shows that people with IBD who have a healthy self-image are in the minority. And after all, how could we not have issues with our bodies? Our bodies fail us without warning, not to mention the symptoms of IBD which are often so distressing and personally upsetting to oneself and to others.
It’s funny, now as an “over 40,” I think back on the days when I was younger and I have to laugh at my skewed sense of self. The facts that support my internal monologue on body image will surely upset those who were closest to me when I was a child and a teen. We didn’t discuss things like body image in the 70s and 80s and there wasn’t anyone who told me the things I tell my daughter, that her body is strong and beautiful and that we will do our best to take care of it.
Recently, during an interview, I was asked to talk about what I couldn’t do because of my IBD or my j-pouch. I may have visibly bristled at the question, though I tried to mask this initial negative reaction. I did think about how to formulate an answer–probably for a good solid minute. In the end, I couldn’t come up with anything.
The interviewer made a few suggestions, but they were things that I don’t dwell on, such as dietary restrictions. Having some dietary restrictions is not something I think about often. I can absolutely still eat all kinds of healthy food as well as not so healthy, yet tasty, food like chocolate, and also have a cocktail. I no longer see food as an obstacle or a problem, because I’ve worked out my diet and I pretty much stick with what I know at this point. Therefore, this is not something I ruminate about or concern myself with too much.
What’s it like to watch your partner’s ulcerative colitis become life-threatening and not be able to do anything about it? My husband, Mike, tells my story from his perspective, including how we met, what it was like to watch my health degrade, and all about our fairy tale wedding.
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Want to become a Lady or Lord of Glencoe, like Amber? Buy your plot of land here: https://www.highlandtitles.com
No, there are no utensils at Medieval Times. But you can get married there, like we did, or have your 15th anniversary party there, which we also did: http://www.medievaltimes.com
In loving memory of Anastasia, also known as Mary Queen of Scots and the Quiet Scottish Tailor.
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.
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