When I still had my colon, I was at the pharmacy on a regular basis. Like most people with IBD (ulcerative colitis, specifically), I was always taking several medications in an effort to keep the inflammation down. I also usually needed over-the-counter things as well — witch hazel and wipes and antacids.
Once when I was in my mid-twenties, the young man behind the pharmacy counter tried to talk to me about my prescriptions. He then questioned my use of that particular location of the pharmacy.
“You know,” he said to me, “there’s a store in [town that I lived in] that’s closer to you.”
We have slang now to describe what this man was doing to me. He was mansplaining it to me. For some reason he thought he knew better. Continue reading
Are you unique? Do you represent most patients with IBD? Christy Stone of Crohnie Bologna tells the story of her disease journey, how she feels that she’s not unique as an inflammatory bowel disease patient, why she chooses kindness, and why these things make her a better advocate.
What’s it like to be a competitive swimmer and one day develop Crohn’s disease? Well, you don’t stop swimming! Hear Ryan Stevens, Crohn’s Guy, talk about the work he’s doing to raise awareness of IBD.
If I asked you what about your IBD you were grateful for, what would you say? This is exactly what I asked IBD Advocates, and their answers are as complex, rich, and varied as they are. As you listen to their responses, you will undoubtedly find yourself nodding in agreement with some ideas and seeing your life from a different perspective with others. I hope this episode is as fulfilling for you to listen to as it was for me to produce. Continue reading
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.
Do you ever feel like the on that sticks out? I do, frequently. I’ve done my best to make the most of bad situations, but when it’s my child that is the one who “sticks out,” I don’t always react in the most rational, thought-out way.
A man approached me at an event, not an IBD-related one, and asked me what everyone was doing. The event was a walk at a local beach and it happened to be for food allergy awareness.
“This is a walk to raise funds and awareness of food allergy.”
“That’s strange,” he said to me, and made a face of disbelief.
“Why is that strange?” I said.
“Because you think it would be cancer or Alzheimer’s or something.” Continue reading
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
“Can you see anything?” asked Lord Carnarvon.
“Yes, wonderful things,” replied Howard Carter, upon seeing King Tutankhamun’s tomb for the first time
On February 26, 2016, I attended an event at the Janssen Biotech facilities in Pennsylvania called The BioExperience. (Janssen is the company that makes IBD medication Remicade.) BioExperience. It sounds like a ride at Disney Epcot: exciting and full of potential. And actually it really was just that. Exciting and informative and something that I would never get anywhere else. I want to tell you a little about what this event was all about.
What is advocacy in the inflammatory bowel disease (IBD) community? Even advocates don’t agree on exactly what this means, maybe because we all advocate in our own unique way.
Myself, Kelly Crabb, and Brooke Abbott at the Premiere of Ryan Stevens’ movie about his swim across Lake Erie, Courage and Crohn’s.
My advocacy started in 2000, shortly after undergoing j-pouch surgery, when I began writing the IBD topic site for About.com. The site has undergone several changes over the years, but what I’ve consistently tried to do is to provide quality, accurate information about IBD that anyone can access, for free. The site has been amazingly successful, and it has been rewarding for me both personally and professionally.
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