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.
Those are the facts. Now, for the reality. Continue reading
This is what prednisone did to me prior to my senior prom. It hurt to smile, my cheeks were so big.
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.
When is your family “complete”? It’s hard to know what the answer is to that question and in some cases it’s decided for you instead of by you.
Below includes my experience of miscarriage. Please note this includes a frank discussion of pregnancy loss and medical treatment for such, as well as strong language.
I never thought I’d be writing about miscarriage. To tell the truth, I kind of don’t want to do it now. But I’ve come to realize that holding back is harmful to me, and imparts the feeling that my experiences didn’t serve any purpose. Not that everything that happens has a reason or a purpose, but I have the ability to take this part of my life and turn it into something positive.
Is there always a piece of you that’s missing? Maybe a piece of information that you leave out when you meet new people. Do you keep your IBD secret because you might open yourself to problems at school or work?
Image © Pawe³ Windys http://www.freeimages.com/photographer/windys-39131
People sometimes tell me, “Oh, I’ve read your blog.” It’s often said almost sheepishly, as though it were something that were slightly distasteful or embarrassing. It does seem to take a little courage for people to tell me this, which also leads me to believe for every person who tells me this, there are others who are reading and yet never say anything.
For my part, I love it when people tell me they’ve read my writing. Especially when they don’t have IBD themselves or have a close friend or family member with the disease. While I do my best to reach people with IBD so that they have the information they need to make treatment decisions and live better, I also want to reach people who aren’t touched by IBD in order to recruit them as allies. After all, this is the very heart of awareness: people with IBD are already aware. We must reach those who have no reason to become educated about IBD, and offer them the tools to become aware.
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