Crohn's Disease Q&A

Crohn’s Disease Q&A

This post is sponsored by Project Baseline. As always, I write what I truly believe in and stand behind, whether I’m paid for it or not. But you knew that already!

The last time we shared some Crohn’s talk here, I decided to get a little bit preachy, and talked about why it’s important to be your own advocate and why human connection is a powerful thing when you’re living with a chronic illness. But I also talked about the great work being done by researchers for Project Baseline’s Gut Research Project who are using health histories to better understand Crohn’s disease and Ulcerative Colitis.

Today! How about a little Q&A?

I’ve shared my history with Crohn’s disease a bunch LINK HERE and thought it could be cool to fill in some of the blanks. Here are some questions you sent in via Instagram Stories, and my always-overly-thorough answers! Ready? Let’s go!

How does Crohn’s impact your running? Do long distances upset it?

Yeah, it’s definitely tough. I’d love to train for a marathon this year, but the last few times I’ve tried training for a 26.2, I’ve flared midway through training. My doctors have never cautioned against it — in fact, my GI is a marathoner himself and we love talking about running at my appointments! But I have to think that all those miles add up and are hard on my body. So, while I have no scientific evidence backing me up, personally I think that yes, a lot of running is hard on my body. (And yeah, hard sprints make me have to go to the bathroom, but I feel like that’s a little more universal? Right? Anybody?)

How do you travel while in a flare?

What is travel? #TBT to travel! But in “normal times,” to answer your question: With a lot of planning! Aisle seats on planes, always. Knowing where my bathroom opportunities will be. Carrying wipes or toilet paper. Maybe even a change of clothes. Just trying not to put myself in stressful situations. I traveled to Paris during a really bad flare back in 2016, and the trip was horrible. I was so sick and the public restroom situation in Paris was not ideal. I got escorted — like grabbed by the arm — out of a restaurant because I ran in to use their bathroom and that isn’t really OK there (a generalization, I realize, but I did not find a single restaurant or public facility that would let me use their restroom, and it was awful). I’d read before going there that that might be an issue, but I hoped for the best. I was optimistic! But unfortunately, I had a few really bad experiences.

How much does stress play a role in your flares?

Big. Huge. My biggest flares have always come around times of big life changes or increased stress. Even when I insist “I’m not stressed!” Stress is stress, and it shows up in our bodies in wild ways. I flared when I moved away to college, when I studied abroad, when I got promoted to my dream job, and when I trained for my first marathon. Probably not a coincidence. (My doctor agrees.)

Can you share the nitty-gritty of what happens during a flare? Is there a lot of pain?

Check out this post!

What were your symptoms when you first went to the doctor? Do you remember your first symptoms as a child?

I don’t really remember much, but I do remember throwing up a lot, which is weird because I never throw up now! That was the big trigger that got my parents to take me to the hospital. Pukey Ali! Also, I lost a ton of weight really quickly. (I was 7 years old and lost something like 37 pounds.)

What can others do to help or support when you’re going through a flare?

Be nice, kind, compassionate, and understanding. Everyone is different, but I know that for me that I don’t need stuff. If I have to cancel plans, or if I avoid making them because I can’t leave the house, I want you to be cool with that. I already feel so bad. Please don’t make me feel worse! I’m already self-conscious about it and want to know our friendship can withstand these tough times. I know my disease is hard for everyone in my life — not just me. My love language is words of affirmation (I love the love languages and made my mom take the quiz today! She is also words of affirmation!), so reminding me that I’m strong, reminding me that I’ve gotten through this before, or even just reaching out to let me know you’re thinking of me — that stuff is like a superfood smoothie for me-with chocolate!

What are your trigger foods that you have to avoid?

Corn. Popcorn. It’s like eating shards of glass. (And lots of leafy greens or roughage. Those never go over well. But corn and popcorn are the hardest of hard nos.) Did you know that more than 3 million Americans adults suffer from IBD? That’s why the work being done at Project Baseline is so important to help learn more about gut health and potential triggers.

How has Crohn’s affected not just you, but your family? My sister has it, and it’s a family issue — not just hers.

Check out this podcast episode with Brian, and this one with my parents!

How long have you typically gone between flares?

It never quite feels like long enough, that’s for sure! I’ve experienced flares that have lasted the better part of two years, and I’ve had quickie flares that only lasted a few weeks. The time in between varies. Growing up, I flared once a year or once every other year. As an adult, my flares are far more frequent. I rarely go a full year without experiencing some Crohn’s-related symptoms.

How do you find out about ongoing clinical trials for new therapies?

I’m so glad you asked! I was part of a clinical trial back in 2013, and I credit that trial with getting me out of the worst flare of my life and back into remission. I was really hesitant and really nervous. I was afraid of being a guinea pig; afraid of getting the placebo. But ultimately, it saved me. I found out about that trial from my doctor’s office — they had a woman whose job was managing research studies and getting patients enrolled and then overseeing them throughout the entire trial. It was amazing. I really do recommend checking out clinical trials, which brings me to…

What ever happened with the drug you were on from the clinical trial?

It’s still in the works! They’re working on bringing it to market and to patients in need, and I’m so hopeful it happens.

While we’re talking about research and things that are designed to help patients and to help the future of treating and managing these diseases…

In the last post, I talked a bit about Project Baseline’s Gut Research Project and I’d like to remind you of what it is today!

Project Baseline’s Gut Research Project was developed to help learn more about gut health. They want to create a better, more thorough, more holistic map of human health.

And they want you!

By choosing to participate in the Baseline Gut Research Project, you get the opportunity to share your own health history and records in order to help that map come together and so researchers can gain a better understanding of Crohn’s disease and ulcerative colitis. It’s all online, it’s simple to follow the prompts, and it’s important. If we want scientists to get to work in their fancy labs with their beakers and microscopes, we need to give them as much information as possible to start with.

Let’s help them out! You’ll be compensated for participating and you get access to the Baseline Gut Research community. Plus! You’ll be among the first to know about other study participation opportunities.

I’m into it. Are you into it? Yay!

CLICK HERE to get started. And thank you for helping this community — our community.

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Ali

Ali

One Response

  1. my husband suffered from crohn’s disease almost all his life and i can tell you that its really terrible, watching him get lean and pale worried me the more, he lost appetite, he was always and was unable to go to work again,he kept having sores in his mouth and the constant pain was making the situation worse. we kept going from one gastroenterologist to another, they were not helping the situation, they kept giving us different drugs and it was making it worse,they kept increasing the dosage, in 2016 when i went to cvs pharmacy to go and get another drugs for him, that was were i heard about dr folonsho a herbal doctor, who specialises in using natural roots and herbs to treat diseases and chronic pain. at first i was in doubt, because we have tried many options that were not helping and all the doctors we came across told us that there was no cure, and i believed, so i contacted this herbal doctor and he said he could help my husband,after i told him my problem, he said he has a herbal remedy that can heal my husband and reverse this illness completely and he will be back to his normal state of health, not having many alternatives anymore i requested for the herbal remedy,because the situation ws getting worse, after using the medicin for about 3 weeks there was great improvement, and my husband was getting back to his normal self, its been 4 years now and my husband is still strong as ever, all thanks to dr folonsho, and may GOD continue to bless you, so if you are still sufferring from this disease kindly ciontact dr folonsho today either through email drfolonsho@gmail.com or via whats app +2348073410606 or you can check out his website https://drfolonshoherbalhome.simdif. com/ and you will be glad you did, i wouldnt want someone to experience what my husband experienced

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about ali

I’m the creator of the Ali on the Run blog and the host of the Ali on the Run Show podcast. I’m also a freelance writer and editor, a race announcer, a runner and marathoner, a mom, and a huge fan of Peanut M&Ms, Mamma Mia! Here We Go Again (way better than the first one!), and reliving my glory days as a competition dancer in the early 2000s. I’m really happy you’re here.
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