As people with inflammatory bowel disease (IBD), it is important that we share our stories. We need to share in order to bring awareness of our disease amongst the public but also to other people who live with the disease. IBD is isolating but there is a thriving community that’s willing to share information and support in order to prevent anyone from feeling alone in their disease.
However. I have concerns.
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
You’ve seen the posts: “Click like” or “Retweet” to vote! An interaction with a post is a “vote” and after a certain amount of time the “votes” are tallied and a winner is declared. Magazines may use this type of crowdsourcing to decide their “best restaurants” or a photography web site may use it to choose a “cutest baby” photo.
I’ve been online, running web sites for myself and for others, since 1996 and this type of popularity contest is nothing new. It’s never going to go away because it’s inherent in our culture. It might be something we have to accept, up to a point. However, I take issue with using this type of “voting” for where we are now: choosing a “best” person from the online chronic illness community. Continue reading
Just as not all healthcare professionals provide the same level of care, not all health websites are equally trustworthy. Most people know by now not to believe everything published on the Internet. However, it can be difficult at times to determine whether or not a health website is giving out accurate and credible information. In the journey to learn more about inflammatory bowel disease (IBD), it is vital to use critical thinking and become a savvy information consumer, as these skills will help in sifting through websites to find the ones that can be trusted.
How can anyone tell the difference between an IBD website that is worth coming back to and one that should be passed over? There are several different clues that help in understanding if the author of a website or an article is providing quality information that is useful in understanding IBD and in coping with the challenges of Crohn’s disease, ulcerative colitis, or indeterminate colitis. Continue reading
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.
This is what Dr Google gave me when I searched for “Crohn’s disease.” I made a few edits because I don’t quite think this information is up-to-date. If I were contracted to edit this, and receiving payment for my time, I would send it back with a complete rewrite and a suggestion that the author was not qualified to write on the topic.
This is what searching Google for Crohn’s disease gives you. It doesn’t exactly inspire confidence, does it?
Cooper: “TARS, what’s your honesty parameter?
TARS: “Absolute honesty isn’t always the most diplomatic, nor the safest, form of communication with emotional beings.”
Interstellar has become one of my favorite movies. Don’t let the science fiction part of it get in your way — it’s not about that. It’s about what it means to be human and how to distinguish between saving individuals and saving humanity as a species.
Having a chronic illness is rather like having a secret. How do you go about telling people of your illness? Do you tell them at all?
I saw a posting in a closed IBD group recently where a member was asking for help in how to request accomodations at work without having to get specific about health circumstances. Advice was offered on how to handle the situation discreetly, until another member demanded that the advice seeker should “tell the truth.” “Why would you lie?” the response continued.
Not revealing the whole truth is not the same thing as lying. I was concerned about the helpfulness of this exchange, and I failed to see how it was productive for anyone. I don’t believe any person has the right to question another person’s decision to not disclose a health situation. We don’t owe each other the truth. Continue reading
Aww. I’m a baby. Why am I holding a football? No idea. This would have been mid-70s, as evidenced by the green velour couch. It was a super comfortable couch, let me tell you. Great for building forts, too.
At the risk of sounding aged and out-of-touch, daily life was much different when I was diagnosed and even 10 years later when I had my j-pouch surgeries. No smart phones. No Internet. No digital photos. Most people didn’t have computers. A lot of people didn’t own cameras.
This is why there are no pictures of me. There are no photos of me battling ulcerative colitis in my hospital bed. No photos of my stoma. My wasted, 89 pound body. The skin peeling off the bottom of my feet. The blood transfusion. The voluminous amounts of gelatin I ate when my body could tolerate nothing else. There are no images of these things. We didn’t take pictures of them, and truthfully I can’t even remember if I owned a camera, or if anyone in my family did. Continue reading
Recently the folks at GoodBelly contacted me and asked me if I’d like to try some of their products. Of course I wanted to try it — I’d seen it in the grocery store and had just never gotten around to giving it a try. I told them I’d be happy to try GoodBelly and they sent me some of their products.
I thought I’d try them and see how they were. I try new products all the time, but I don’t write about them unless I like them. I was not so surprised to find that I liked GoodBelly myself, but I was a bit surprised at the reaction amongst my family and friends.
Look how cute this is! Isn’t that just what you need in the morning? And it tastes great, too!
The way forward looks treacherous. But we must work together to find our way across.
Image © Sean Kearney
I had a recent revelation as I was planning an event for a group I volunteer with for one of my children. I am a volunteer, as so many parents are, and I spend a fair amount of time working with other parents and within the community to plan fun and educational events for our kids. But I am beginning to wonder if this is the best use of my time and if it’s providing the best experience for my children. And then it hit me – my thoughts were directly related to advocacy for chronic illness. Continue reading