“It’s Not Helpful When You Say That”

“It’s Not Helpful When You Say That”

"I can totally relate, I once had [thing]" -Anyone who finds out you have an autoimmune disease "At least it's not cancer" -Also anyone who finds out you have an autoimmune disease No one knows how to talk to you about being sick. Especially as you are just entering life with disease, or processing a new diagnosis, you'll often find that 'real talk' is bypassed for a combination of fluffy encouragement, unsolicited advice, and even some WTF moments. We like to think that most of this is well-intentioned (although unfortunately not all) but it often misses the mark because those around you are afraid to, or simply don't know how to talk to a sick person about being sick. Learning to guide the narrative means, in simpler terms, telling people how to have conversations with you. It takes learning on both sides, and it's something I wish I would have recognized and embraced earlier on in my disease journey. It cuts to the chase of...
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When Your Cup Is Almost Empty

When Your Cup Is Almost Empty

  "You can't pour from an empty cup." - Norm Kelly Whatever lessons we've learned about self-care, community care, and compassion fatigue have been amplified by the 2020 global pandemic. The stress and anxiety, the loneliness, the mental effort it takes to process, and the unknown finish line have been brought to the surface for not just chronic illness patients, but most everyone in the land. I've been in a comfortable place with my own IBD for some time now, and I've stated repeatedly that when you're in remission, it's your opportunity (if not obligation) to give back to those who are where you once were. After all, when I was disastrously sick, navigating a new diagnosis, and learning to live a life incurable, I took what I needed, and I found it from those who were so able to give, even when I had nothing to return at the time. Now that we're collectively experiencing a similar-but-also-way-different health crisis, I've found myself on...
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Gutless, Glamorous, and Going After Awareness

Gutless, Glamorous, and Going After Awareness

American Eagle’s intimates brand, Aerie, has always been a leader in featuring real, unretouched women in their product campaigns. They do a great job of not making the individuals featured seem like outliers, or the spotlighted exception to the traditional model – rather, they’re there. They’re featured in ads and product listings, no big deal, as if they were the norm. Because, guess what, they are the norm. So this week when we tapped into our social feeds, we were super excited to see a face we recognized right there on the product listing, our friend Gaylyn Henderson of Gutless and Glamorous. There’s no denying Gaylyn is gorgeous and brave and strong and unashamed. She’s the perfect representation of ostomates and IBDers for a spot like this. We’re SO proud of her and so overjoyed to see a company like Aerie include her among others with varying diseases and disabilities in their product features. Having women like her featured is a total...
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Emily’s Clinical Trial Journey

Emily’s Clinical Trial Journey

Emily's Clinical Trial Journey Emily, like so many Crohn’s patients, has struggled with symptoms on and off for several years. She’s tried nearly every approved medication available, and on top of the everyday pain of dealing with disease, she’s got the added anxiety of feeling like she’s running out of options. Emily’s decision to enter a Crohn’s clinical trial comes from both her willingness to seek out another option, and her desire to contribute to research. Patients’ participation in drug trials are part of the Clinical Study portion of the FDA approval process, which includes 3 phases. Each progressing phase includes a greater number of trial patients, so the majority of experiences are part of Phase 3. This phase looks at effects on a larger population including demographics, considers side effects, and often uses drugs in combination with others. Previously, during Phase 1 and Phase 2, safety and effectiveness have already been tested. Hope for a 'Very Challenging Patient' I was first approached by...
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To Talk, or Not To Talk?

To Talk, or Not To Talk?

To talk, or not to talk? That is the question. Okay, so if Shakespeare were here and had Inflammatory Bowel Disease he would totally be asking you that exact question right? I COMPLETELY understand that talking openly and honestly about Inflammatory Bowel Disease, whether you have Crohn’s Disease or Ulcerative Colitis has probably sent many of you to run and hide behind the back of the sofa. Come out…please come out? I get it, I’ve been there myself… It can be embarrassing, hard to talk about and some of you may prefer to keep it all to yourselves. Keep your ‘secret’ hidden away because that’s what makes you feel most comfortable. Not having to talk about your illness whether it be due to feeling ashamed, frightened or a burden on other people, these are all natural when someone brings up the topic of ‘discussing’ IBD in a very public way. We have all felt annoyed or angry when someone says a really mean comment....
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I’m Sick-Sick

I’m Sick-Sick

So now that the holiday season has come and gone, the New Year is usually a time when we all reflect on the previous year and think about how we want to change going forward. I took this time, however, to think about how I spent my holiday season – sick. And no, I wasn’t having a flare and out of control Crohn’s symptoms, which is what the holidays (mostly over-eating) usually bring for me. I had the flu. Type A and B. Let me tell you: when I was in that doctor’s office and I was told that the flu test came back positive for both Type A and B, I was floored. A flu diagnosis is usually maddening for a typically healthy person, but for someone with a chronic disease and a suppressed immune system, it’s terrifying. What could usually last a week could possibly last 3 weeks or more with an immune system so compromised like mine is. I...
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Along the Journey of Crohn’s

Along the Journey of Crohn’s

I don’t know where to begin. It has been suggested to me many times that I write down the story of my journey through college, getting a grown up job, getting married, having a baby and oh, yeah having Crohn’s disease. I am not truly sure where to begin with this story, so I will begin at the beginning and go to the end, though I know it will not be straight through, as no good story goes straight from beginning to end. 2009 College can be a trying time for anyone. Moving away from home, dining hall food, partying, and stress from an insane course load is enough to cause anyone a little digestive distress; especially someone who has food allergies, such as me. I spent four years trying to figure out where the “hidden” bathrooms were in each of my academic and resident buildings to ensure no one knew it was me getting “sick” and stinking up everything. Luckily for me, I...
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Colonoscopy is Not a Dirty Word – Tips for the Prep

Colonoscopy is Not a Dirty Word – Tips for the Prep

Oh, so you’re getting a colonoscopy? It’s not so bad. Whether it’s your first or your tenth, I think we can all agree that it’s better than uncontrollable bowels and never ending pain. At least you have an excuse to stay near the toilet. Here are some Colonoscopy Prep Tips. Let’s look at the bright side of colonoscopies: 2 days with a valid excuse to do as little as possible.  Perfect opportunity to ignore your boss and watch Dawson’s Creek from episode 1, and not feel lame doing a jigsaw puzzle. Cleaning out your system.  Even though all preps are hard to get down, and the effects are unpleasant, once you get through, it’s nice to get completely empty and give your bowels a break from their full time job. Post-procedure naps.  After it’s all done, you can head home and take pretty much the awesomest, most refreshing nap possible. Your first meal back.  Two-Four-Six-Eight, who do we appreciate? Solid food. If...
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10 Gift Ideas for Crohn’s and Colitis Patients

What  gifts do you get your friends who have Crohn’s or Colitis? The holidays are coming up, and we’ve got some awesome ideas that will show them how much you love and support them!  Here are 10 ideas that will go great with Ask Me shirts. Need more? Here are 12 more inspiring, healing, and funny ideas. 10. Lavender Scented Oil – Lavender triggers natural relaxation, and emu oil is a gentle moisturizer that helps heal scars.  Olivu 426 handmakes products with all-natural ingredients, and you can add any scent into any product!  Sandalwood is another great scent for relaxation. 9. Designer Pill Box – What lovely lady doesn’t appreciate a high fashion case for storing her meds?  These small pill cases that contain 3 small containers for medicine on the go, and can be found at more and more retailers, from stocking stuffer priced Charming Charlie’s, to high end Henri Bendel. 8. IBD Healing Plan Cookbook – This new cookbook offers IBD-specific recipes as well as understanding of how a proper diet can...
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What I Want You To Know

What I Want You To Know

What I Want You To Know about Crohn's and Colitis To all the caregivers, bosses, classmates, and friends. To all the boyfriends and best friends, to the girl that I see at yoga class. I want you to know this: I have IBD. It stands for Inflammatory Bowel Disease. (It does not stand for Irritable Bowel Disorder, or anything else, and it’s not the same as IBS). If you know me, you probably know this. I talk about it frequently. I volunteer for various organizations. I have my elevator speech worked out, and I can rattle off definitions, facts, and statistics in my sleep. But do you know what that means to me, and the other patients who live day in and day out with IBD? Do you know that it’s not just some medical jargon that I apply to my digestive system? It’s so much more than trips to the toilet and chronic fatigue and bi-monthly infusions and doctors’ visits. This is my life. We all know...
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