When I interview someone about their journey with chronic illness, either for a written piece or for About IBD, I’m keenly aware that I’m asking them to tell me about the worst things that have happened to them.
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Having surgery for ulcerative colitis comes with a lot of unknowns. J-pouch surgery in particular causes worry, which is understandable. However, it’s important to know that most of the time, this surgery is successful and people go on to live well.
Having j-pouch surgery for me has meant I am able to do a lot of things that I could never have done with ulcerative colitis. That includes hiking, camping, and white water rafting. Part of these types of trips include time without running water or a flushing toilet. And a day out on a raft in the water means no bathroom access at all.
I realized that some people may think outdoor activities aren’t a reality after surgery. But they’re absolutely possible, as well as many more adventures. For that reason, I thought I’d lay out how I plan before going on outdoor activities.
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People with inflammatory bowel disease (IBD, Crohn’s disease, ulcerative colitis, or indeterminate colitis) are understandably concerned about the novel coronavirus, and the disease it causes, COVID-19, spreading in their community. People who have certain medical conditions and/or are receiving immunosuppressive medications may be at a greater risk of complications for COVID-19. There are some guidelines put out specifically for people with IBD that can help in making decisions during this time. On this page you will find trusted and verifiable resources that help you as you make choices regarding travel, medications, and everyday life during the pandemic.
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Living with inflammatory bowel disease (IBD) can mean it may be difficult to travel at times. There are many reasons why traveling could be challenging but one of the major problems is the lack of easy access to bathrooms. Public transportation tends to be notorious for not having restrooms and this can give people with IBD some anxiety. That’s why having a travel kit stocked and ready will help people living with Crohn’s disease or ulcerative colitis to have more confidence when making travel plans.
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“Who wants an Oreo?”
A man sits near me in the road, offering Oreo cookies to the bike riders pedaling past him up a massive hill. Another man walks over and asks, “Did you give out cookies last year, too?”
“Probably,” says the man in the road.
“Well, if it was you, it was a highlight for me, getting that cookie. I really appreciated it.”
I am on the sidelines of the IRONMAN Wisconsin race: a feat of endurance for athletes who will swim 2.4 miles (3.86 kms), bike 112 miles (180.25 kms), and run 26.22 miles (42.20 km) in one day. Many of the spectators are previous racers themselves: they sport hats, shirts, backpacks, and even tattoos with the IRONMAN logo.
Inflammatory bowel disease (IBD) takes a toll on your health; not only on your digestive system but also on your entire body. However, that’s only part of the story: Crohn’s disease and ulcerative colitis also eat away at your professional and personal relationships, as well as your finances. IBD is expensive. Having outstanding medical bills can put significant stress into the life of someone with IBD. In some cases, medical debt can make it difficult to be seen by providers because it’s not possible to make an appointment or get a test until a bill is paid.
That’s why people in the chronic illness community are always on the lookout for ways to maximize costs or to use lower-cost services whenever possible. Unfortunately, it can take time and energy to find free or low-cost services; and people with IBD may not have these resources available to them, either. The resources found here can be used to help keep costs a little lower, while still accessing the services that people with IBD need. 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
Members of the IBD Social Circle, Janssen Biotech, Tonic Life Communications, and gastroenterologists meeting at Digestive Disease Week 2014. I’m in the first row, fourth from the right. Everyone in this photo is an amazing IBD advocate, and I am privileged to have met them and worked with them.
Patients don’t typically get invited to medical conferences. However we are entering a new age of the “patient expert” — highly motivated patients who not only learn more about their disease for themselves, but share their knowledge with others.
In 2014, I was privileged to be invited to attend Digestive Disease Week in Chicago, and Advances in IBD in Orlando, courtesy of Janssen Biotech.
Attending a medical conference, for me, was both thrilling and terrifying, in equal measures. Continue reading
I do enjoy a good bathroom. This fun women’s room entry is found at the M&M store in New York. (I also enjoy a good M&M. Or any M&M, really.)
I was using the so-called “courtesy flush” long before I knew it had a name. Flushing something particularly odorous quickly or flushing to mask the sound of flatulence are common reasons for the courtesy flush. You might use this tactic at a friend’s house or even at home, but most often it’s used in public bathrooms, especially those that are not well-trafficked.
Anyone who has inflammatory bowel disease (IBD) has used the courtesy flush. Maybe there are some who couldn’t care less what the person in the next stall hears or smells, but others feel some embarrassment.