Author Archives: Amber

How I’m Learning to Be SMARTer About Managing My Health

How I’m Learning to Be SMARTer About Managing My Health

I’ve never before considered contacting a health coach. I’m fortunate to have a robust support network and as an experienced patient, it seemed to me that perhaps a health coach wouldn’t have much to offer me. My mind was changed, however, when I got in contact with Pack Health.

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Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio.

About IBD Podcast Episode 58 – Don’t Stop the Things That You Love

Being diagnosed with ulcerative colitis as a child and undergoing j-pouch surgery in high school hasn’t slowed Sneha Dave down at all. In fact, it spurred her to found two groups that are focused on bringing young people into the patient advocacy space: the Crohn’s and Colitis Young Adults Network (CCYA) and the Health Advocacy Summit (HAS). Learn how Sneha grew the CCYA from its humble start as a newsletter, the opportunities that CCYA and HAS offer to young patients, and her secret to managing a work/life balance.

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About IBD Episode 57 - I Really Don't Think About My Ostomy Anymore

About IBD Podcast Episode 57 – I Really Don’t Think About My Ostomy Anymore

Living with a permanent ileostomy as a result of Crohn’s disease hasn’t stopped Ryan Stevens from participating in the sport he loves. He worked his way back from crushing IBD flare-ups and multiple surgeries in order to train for the ultimate triathlon: the IRONMAN. In this second part of Ryan’s story, hear what happened to him while on the bike route, why the ostomy may actually provide an advantage, and Amber’s unfiltered thoughts on the competitiveness of the triathlon community.

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About IBD Episode 56 - This Is Still Better Than Surgery

About IBD Podcast Episode 56 – This Is Still Better Than Surgery

A diagnosis of Crohn’s disease and an ileostomy hasn’t stopped Ryan Stevens from competing in triathlon races. He swam competitively through high school and college and was sidelined by Crohn’s just after falling in love with triathlon. He’s worked his way back twice from devastating flare-ups to get back to swim, bike, run, and now to the ultimate race: the IRONMAN. Come with us as we relive the IRONMAN Triathlon in Madison, Wisconsin and discuss how Ryan prepared and competed while living with IBD and a permanent ostomy.

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What to Put in an IBD Travel Kit

What to Put in an IBD Travel Kit

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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About IBD Episode 55 - You Have to Take Care of Yourself

About IBD Podcast Episode 55 – You Have to Take Care of Yourself

Being diagnosed with inflammatory bowel disease (IBD) at any time or at any age is challenging. However, the pre-biologic era was especially difficult because of the lack of treatment options and the absence of some of the legal protections that are in place today. Danielle O’Connor tells her story of being diagnosed with ulcerative colitis at a young age and how she managed her career as a special education teacher through many hospitalizations and surgeries.

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About IBD Episode 54: I Would Have Missed the Window for a Child

About IBD Podcast 54 – I Would Have Missed the Window for a Child

People with IBD are often faced with unexpected challenges that are outside of those being experienced by their peer group. Jen McGregor of Crohnie Clothing found herself grappling with questions about her fertility while still in her early 20s. She had to act quickly in order to preserve her ability to have a biological child. Jen tells her personal story of working through the emotional, physical, financial, and even legal aspects of planning for her future fertility.

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IBD Is a Marathon, Not a Sprint

“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.

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About IBD Episode 53 - He Would Do the Same For Me

About IBD Podcast 53 – He Would Do the Same for Me

Caregivers play an important role in the disease journey. For Rebecca Kaplan, whose husband, Dan, lives with Crohn’s disease, caregiving has been a large part of her life at times. When she went looking for support for herself as a caregiver, what she found was a need for more resources. She went on to not only create a support space for caregivers but also to take a leadership role in the inflammatory bowel disease community that benefits everyone who is touched by these diseases.

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Free Resources for People With IBD

Free Services Available To People With IBD

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