Tag: IBD warrior

59 marathons and counting: How this IBD warrior perseveres despite her disease

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When you think of a marathon runner what words come to mind? Grit, resilience, drive, focus, strength…the list goes on. Michelle Ladonne, 34, of Massachusetts, isn’t your typical long-distance runner. Not only was she diagnosed with Crohn’s disease in 2010, but she’s also managed to participate in 59 marathons in 35 states and 3 continents. Yeah. You read that correctly. Incredible, isn’t it?!

Like many of us, Michelle is the first person in her family to be diagnosed with IBD. When she was told she had Crohn’s, she frantically started Googling from her hospital bed. All she remembers hearing the doctor saying are “lifelong” and “no known cure”. She was certain she’d been handed a death sentence. Her life, at age 23, flashed before her eyes.

Going the distance

As time passed, Michelle learned how to listen to her body better. She says she’s become better at determining whether pain is a “routine Crohn’s symptom” or an acute issue that needs immediate medical attention. Finding the balance of when to push through and when to rest has enabled her to feel more in control of her life and her disease.

“I used to think that the ideal was to never let Crohn’s hold me back from reaching my dreams, or to not let Crohn’s become an excuse. But the reality is that I live with a chronic condition, and despite all the determination and effort in the world, sometimes Crohn’s wins, and I need to be ok with backing off, resting, and focusing on my health,” Michelle explains.

She admits—she doesn’t always listen to her body. She’s ran some races while in the middle of a flare or not long after a hospital discharge.

“I think with experience – both with running and managing Crohn’s symptoms – I’ve learned when I can push through the symptoms, or when I will make things worse if I don’t back off. I try to listen to my body and accept that sometimes not running is the safest and healthiest choice – whether that means skipping a training day, missing a race, or twice coming to that realization mid-race and walking off the course.”

A team effort between care team and patient

Michelle recalls her experience running in the 2018 Berlin Marathon while in the middle of a Crohn’s flare, about a month after being hospitalized. She says her GI was not overly excited about the idea of her traveling out of the country to run a full marathon.

“My abdominal pain wasn’t well controlled, and I was underweight after having been on a liquid diet for several weeks. But my GI knew how important it was to me and supported me. I started the race knowing that if I didn’t feel well, I could slow down or walk, and worst case, I would stop. I started at a conservative pace and focused on hydrating and tuning into how my body felt.  I remember seeing my friend cheering at mile 16, and I ran into her arms and exclaimed, “I am doing it!  I’m going to finish this!” 

Crossing that finish line felt like the biggest victory for Michelle. Right after finishing the race, she texted her GI doctor a photo wearing a medal and thanked him for his support. True to form, Michelle’s GI reminded her that beer is a clear liquid, and since she was in Germany, she should have one to celebrate! 

Persevering through Crohn’s and running

Michelle says having the mindset to persevere through life with Crohn’s and running marathons is similar. She says there’s an adage in marathon running, “when your legs can’t run anymore, run with your heart.”

“Miles 20-26.2 of a marathon bring some of the most brutal pain and physical exhaustion imaginable. At that point, you learn to trust that you are strong enough, tough enough, and brave enough to keep moving forward. You learn to push on when you feel like giving up, because forward is the only option,” says Michelle. 

During a recent 22-day hospitalization, she was in more pain than ever before. COVID visitor restrictions left her feeling lonely, anxious, and afraid. She had to draw upon that same reserve of mental strength as at mile 20 of the marathon. She was physically and mentally spent but knew that digging deep and pushing forward was the only option.

“Just like in running marathons, I had to trust in my experience; I had overcome other challenging situations when I wasn’t sure that I could, and this was just one more challenge that I would eventually overcome.”

Michelle’s advice for fellow IBD runners

  • Figure out how nutrition factors into your running – specifically what you eat and drink before you run. It can be different for everyone. Some of it is trial and error. If running a shorter distance, Michelle doesn’t eat 2-3 hours prior. For longer distances, fueling becomes more important, so she’ll eat something soft and “safe”, like white toast with peanut butter and honey.
  • Plan your route in advance and evaluate the bathroom options.  For longer runs, particularly if you are flaring, try to be strategic about running in locations with bathrooms. Think about local parks, gas stations or fast-food places (support those businesses after your run!).  In a pinch, construction porta-potties work, too. 
  • Don’t perseverate on the bad runs. You’ll have them – the days where everything hurts, you are exhausted, and it’s just a miserable kind of slog. Choose to celebrate the victory of having made it out the door. Know that just like Crohn’s, the bad days happen, but so do the really good ones, and that’s what makes it all worthwhile. 

Not allowing Crohn’s to keep her on the sidelines

Michelle is grateful she’s able to run, and do what she loves, despite her disease. She knows not everyone with IBD is able to be physically active. While Crohn’s has sidelined her at times, it’s never completely robbed her of her passion or changed her focus. On the difficult days, Crohn’s has made her even more appreciative of running and the gift that it is to her.

“On the days when I don’t feel like running – it’s too cold, too hot, too rainy – I remind myself that I don’t “have” to run, but I “get” to run.  Not everyone is so lucky, and I don’t take that for granted. Having Crohn’s, it is easy for me to think of my body as somehow broken or defective. Running has helped me to appreciate that my body is capable of some amazing things.  Running has taught me to focus less on what my body looks like (the weight fluctuations of flares and steroids can be tough!) and more on what my body is capable of.”

Taking steps to control fatigue

Even though Michelle clearly has magnificent endurance and strength, it doesn’t mean she isn’t familiar with fatigue and that makes even the most basic daily tasks feel insurmountable. If she’s feeling that overwhelming sense of fatigue, she’ll skip a run or lay on the couch with a heating pad and watch Netflix like the rest of us. At the same time, she says it’s important to distinguish between physical fatigue and just not feeling motivated to go for a run. She tries not to let her Crohn’s become an easy out during the long Massachusetts winters, or in the pouring pain, or even after a long day of work.

She currently takes 6MP and is on Entyvio every six weeks to manage her IBD.

Running goals now and in the future

Since 2016, Michelle has been focused on running a marathon in each of the 50 states. COVID put a hold on that goal, but she hopes to get back to traveling soon so she can cross the finish lines in every state.

“During COVID, since I couldn’t travel, I started focusing on running every street in the towns south of Boston. So far, I’ve finished 11 towns and over 4,000 streets. I have enjoyed exploring so many interesting places close to home and seeing all the history in southeastern Massachusetts. I am toying with a goal of running all the streets in Boston – I think that may need to happen!”

Michelle has also been checking off all the Marathon Majors—New York, Chicago, Boston, and Berlin.

She underwent a hemicolectomy—the removal of a portion of her large and small intestines in March 2021 and was readmitted two weeks after surgery with blood clots in her abdomen. At that point, she was diagnosed with a clotting disorder, in addition to endometriosis in her bowel. After 22 days in the hospital, and six weeks off from running so she could heal, she’s started to slowly build her mileage back up as she regains her strength. Michelle ran a 5K a few weeks ago and is running a half marathon later this month. Her main goal—to run the London Marathon in October, and potentially a few other fall marathons. Once she finishes London—she’s planning a trip to Tokyo to complete the Majors.

Michelle enjoys sharing her patient journey—the ups and downs, the blood, sweat, and tears, and everything in between, in hopes her experiences might help others feel less alone and to know that anything is possible.  From weeks in the hospital to completing a 100-mile ultramarathon, she’s done it all, all while living with Crohn’s disease.

Connect with Michelle on Instagram: @run4life262

How Crohn’s Disease Inspired Ted Fleming to Create Partake Brewing

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Ted Fleming of Calgary gave up alcohol more than a decade ago to keep his IBD symptoms and disease activity under control. He was diagnosed with Crohn’s disease in 2005, at age 25. Ted says he not only missed the taste of beer, but discovering new beers. Even more than that, he found he missed the social connection that comes with sharing a drink with a colleague after a hard day’s work, cracking a beer with the guys after hockey, and joining in to celebrate special occasions.

A friend suggested he try non-alcoholic beer. Ted says the problem is most tasted awful and there was almost nothing on the market in terms of variety. It was at that point Ted decided to launch Partake Brewing. His hope—to bring all things that make craft beer great to non-alcoholic beer drinkers including taste, variety, authenticity, creativity, and passion. Now 42, Ted, is a shining example of someone whose career path evolved because of and was inspired by his IBD.

I was intrigued by his patient journey and how he got to where he is today. Here’s his Lights, Camera, Crohn’s interview:

NH: How has your patient journey with Crohn’s disease the last 15-plus years helped you create a successful business?

TF: “The discipline around my own personal health has helped me as a business owner to set priorities and largely keep to those priorities. There are many distractions and potential paths to go down as an early stage business so planning and having the discipline to stick to the plan over the long-haul are critically important.”

NH: How do you manage your IBD (medication/lifestyle wise)?

TF: “Regular exercise, medication (Humira), dietary changes (limited red meat, no uncooked veggies, no alcohol), get enough sleep, and be social.”

NH: What advice do you have for those who are worried about finding a career path they’re passionate about while juggling their IBD?

TF: “I am fortunate to have had some long periods of remission, but early on I struggled and that impacted my journey to find a career that was rewarding in ways important to me. Being willing to try new things is a good way to test interests, but with IBD, we don’t always feel up to it… so knowing when to say no and being ok with that is a necessary skill that takes practice.”

NH: How do you navigate the stress associated with running a business and managing your Crohn’s?

TF: “Managing stress has been an important part of my journey and I find that when I do start to have trouble with my Crohn’s, stress is usually one of the triggers. We each manage stress differently so finding what works best for you is important and integrating regular stress relief and stress avoidance into your daily routine can pay huge dividends. Besides avoiding alcohol, I have adopted better sleeping habits, exercise regularly, plan to socialize directly with people, and largely refrain from using social media.”

NH: What type of feedback have you received from customers? Any IBD folks reach out and thank you for creating this?

TF: “We are so lucky to have some of the best fans in the world, our consumers are incredibly passionate about our beer and our mission. We get emails regularly from consumers from all walks of life who are grateful to have the opportunity to enjoy a great beer no matter what their reason for partaking. The IBD community has really rallied around us and I am incredibly grateful and humbled by their outpouring of support. It was this feedback, particularly in the early stages of the business, that helped us push through the inevitable challenges of running a startup and to this day gives us a powerful purpose.”

NH: What sets your non-alcoholic beer apart from the rest?

TF: “Partake Brewing’s beer is crafted with international award-winning recipes, is incredibly delicious, and is only 10-30 calories per can. Our beer is also brewed with four simple ingredients but is packed full of flavor. When I started Partake Brewing, I wanted to not only brew a great beer but I also wanted to bring a variety of great beers to the non-alcoholic market so anyone can Partake on their own terms.”

NH: How/where can people get their hands on Partake?

TF: “You can find Partake Brewing on shelves across Canada and the USA, but you can also have it delivered straight to your door from DrinkPartake.com. In Canada, you can find us at major retailers such as Safeway/Sobeys, Loblaws, Atlantic Superstore, Great Canadian Superstore, and the LCBO as well as many others. In the US, we are sold at Total Wine & More and select Whole Foods.”

Connect with Partake Brewing

Instagram: @partakebrewing

Facebook and Twitter: @DrinkPartake

Chronic Illness & Finances: 5 Steps for Improving Your Financial Health

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For most of us, the words “personal finance” feel scary. Scary in the way IBD was right after we were diagnosed. But as we learned more, those butterflies lessened. This is also true for money and personal finance. The feeling that makes us want to turn away because it seems too complicated, too intense, too painful, and too scary go away with a bit of knowledge and a few simple habits.

This is where 27-year-old Annelise Bretthauer, CFP®, of Oregon comes in. Annelise was diagnosed with Crohn’s in March 2017. Just like all of us, she is a lot more than just a patient. Annelise is newly married and she’s a financial planner. Get this—her professional focus is to help families manage chronic disease! How perfect is that. 190809_Annelise_M_0211Her goal for you today is to walk away feeling better equipped when it comes to money saving know-how and a bit more empowered. I’ll let her take it away…

The keys to financial stability are a dash of planning, a positive money mindset and a system that helps you stick to positive habits, which allow you to achieve your goals. Creating financial stability is an impactful way to reduce your stress and save energy for other things that fill your healing cup. Let’s jump in!

Step #1: Take a few moments to ask yourself, what are my closely held beliefs about money? Are these beliefs limiting my progress?

A couple examples are: I don’t understand financial things, I am not good with money, money is evil, I am only secure when I have lots of money, money is scary or maybe, I love money, money flows easily to me. stil--837JygbCJo-unsplashThere is no right or wrong. What is coming up for you? It doesn’t need to make perfect sense, it’s just to get your mind thinking about how you view money. Share these sentiments in a journal or planner.

Step #2: Write yourself a positive money and health affirmation on a sticky note. 

This looks different for everyone. Most of us have negative beliefs about money, but some of us don’t! If that’s the case for you, that’s okay too. Design this affirmation to help you build wealth in a way that inspires you. Put it on your mirror and say it out loud right before you brush your teeth each morning and evening.

A couple examples are: I am worthy of prosperity, I have the power to protect my health while earning plenty of money, each day I become healthier and wealthier.

Step #3: Develop a simple spending plan. 

The simplest way to do this is to take out a piece of paper or a note on your phone, write down how much money you take home, subtract how much you want/can save and what’s left can be allocated to your expenses. The key is to set up an automatic transfer to your savings account on the day you get paid, so you don’t have to think about it.

Step #4 (a piggyback on #3): Create a savings account that is just for managing your health and automate your savings to it each month on the day you get paid. michael-longmire-lhltMGdohc8-unsplash

This can be a game changer. When money is already set aside for your health, it helps alleviate the energy and stress that comes with the cost of managing our IBD.

Step #5: Create a habit of Financial Planning Saturday. And a system to help you stick to it!

This is a simple weekly 10-minute check-in with yourself (or your partner) to look at your bank accounts and check your credit card balance. Decide how you will adjust next week if you need to.

Ask yourself, how will I create a system that makes it easy for me to remember to do it? For example, if you always do yoga on Saturday morning, make it a routine to do your planning meeting right after. Or set an alarm on your phone as a reminder.

Bonus Tip: Set yourself 6-month and 12-month health and wealth goals. Write it down in a planner or journal, then take it out each Financial Planning Saturday and check your progress. Give yourself grace and commend yourself for showing up. If you keep showing up, you will meet your goals, even if it takes longer than you’d like. kyle-glenn-_AR74EoWdy0-unsplash

If you don’t think of yourself as a money person. Let’s change that! All people are money people. Financial planning is not just for those who have already built wealth. It’s for all of us. As chronic disease IBD warriors, you have figured out so much already. Offer yourself permission to feel the fear and do it anyways. Let’s make a plan and step into the driver’s seat of our health and our wealth.

If this post sparked your curiosity, stay tuned for the launch of www.Kauviara.com. Annelise is working on courses (which will be free as a Lights, Camera, Crohn’s reader) and a Financial Guide Planner.190809_Annelise_M_0108

You can follow Annelise here:

Instagram: @annelisebretthauer

Facebook: Annelise Bretthauer