What is your favorite week of the year? For the kids, counselors, and volunteers at Camp Oasis, their favorite is camp week. Learn more about a summer camp that’s designed especially for kids who have IBD but is also the place where the campers actually feel the most freedom from their disease. Amber visited camp on visitor’s day and talked with campers, leaders in training, and counselors to find out what makes Camp Oasis so special to them.
What happens when a diagnosis of Crohn’s disease stands between you and your chosen career? This is exactly the barrier that veteran journalist and news anchor Natalie Hayden faced in the early days after her IBD diagnosis. Her decision was to gather her support system around her and get camera ready. Find out how she made it as a morning news anchor, found the love of her life, started her family, and founded Lights, Camera, Crohn’s.
How can we help new ostomates better adjust to their stoma? Megan Johnson, who you might better know as The Front Butt YouTuber, had a unique journey on the way to becoming a permanent ileostomate due to Crohn’s disease. Her experiences with the abysmal patient education material in the hospital after ostomy surgery sparked her desire to make accessible content that helps people adjust after surgery and “be comfortable in their own skin.”
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.
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.
Did you know that more than 70% of people with IBD have reported bathroom accidents (fecal incontinence)? Did you also know that only around 20% ask for help from their physicians? It’s a sensitive topic, to be sure, which is why I offer advice on how to cope with this problem and how to avoid it in the first place. If you’re struggling with this issue I have tips that you can use today but the best advice is to talk to your doctor about it (and I discuss that also!).
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.
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.
“It would be the death of you to come with me, Sam,” said Frodo, “and I could not have borne that.”
“Not as certain as being left behind,” said Sam.
“But I am going to Mordor.”
“I know that well enough, Mr. Frodo. Of course you are. And I’m coming with you.”
― J.R.R. Tolkien, The Fellowship of the Ring
Frodo, Sam, and Gollum (who was also suffering from being under the spell of The One Ring) in Emyn Muil, on their way to Mount Doom to destroy the ring in the fires there.
© Tomasz Steifer, Gdansk, under the Creative Commons Attribution 2.5 Generic license.
Do you feel supported in your daily life, as you navigate your way through your diagnosis of IBD? Support can come in many forms, and you probably have several sources of support, but I think it’s probably rather rare to feel supported all the time.
In The Lord Of The Rings, Frodo the Hobbit is charged with carrying The One Ring. The One Ring, which looks like a simple gold ring, is infused with evil power, and it poisons Frodo in body, mind, and spirit. Frodo’s friend and companion is Samwise, who travels with Frodo to destroy The One Ring before it can fall into the wrong hands. Frodo becomes increasingly unstable during their journey — obsessed with The Ring and, in the end, unable to even walk. Sam carries him. Continue reading