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OstomyLife Community

Running Around the World in 7 Days to Raise Ostomy Awareness

Laura Cox
Ostomy Lifestyle Specialist | Shield HealthCare
11/25/19  9:00 AM PST
marathon runner

We love sharing the impactful stories of members of the OstomyLife Community. Today, we wanted to highlight an amazing member named Jonathan, who is participating in a World Marathon Challenge (if you don’t know what that is, like I didn’t before meeting Jonathan, keep reading). He is participating in this intense challenge to raise awareness for people living with ostomies. Below, Jonathan talks about his life, mission, his ostomy, and the importance of goals! Get ready to be inspired!

Hi Jonathan! Thanks for agreeing to share your story with us.  First, could you tell us a bit about yourself and your ostomy story?

Sure. I went on a backpacking trip through Europe in 1999. On that trip I started having stomach issues and didn’t eat very much.  I started to rapidly lose weight and had constant abdominal pain. When I got back I went through a battery of medical tests to figure out what was going on. 

I was diagnosed with Ulcerative Colitis in early 2000. I was 21. I was initially given medication to reduce the abdominal pain and curb some of the bowel issues that had developed. I was able to manage my UC for over a decade. I don’t know if I would say that I was in remission, but I was able to deal with it. However, this required ingesting up to 25 pills a day. Eventually the wheels start to come off the bus. The medication stopped working. My GI recommended infusions. These infusions required that I go to a facility and get hooked up by IV to a machine that would slowly drip stronger drugs into my system. I looked around the room and it was filled with elderly people who were being treated for all sorts of issues, including cancer. To say I felt out of place is an understatement. Eventually, at-home injections were recommended. This required me to inject myself with even more medication.  Eventually, this failed as well. 

In 2015, my GI referred me to the Mayo Clinic. At the Mayo Clinic, I met with Dr. David Etzioni, a colon and rectal surgeon. Dr. E (as he is known by in the hospital) recommended a procedure called a j-pouch. This is a three-part procedure that requires having the majority of your large intestine being removed. I was told that I would have to live with an ostomy bag for a short time. I was supposed to have a takedown procedure to remove the bag and reconnect my intestines. Unfortunately (or maybe fortunately depending on how you look at it) Dr. E didn’t recommend the takedown. He felt that I may have been misdiagnosed and that I might actually have Crohn’s disease. Because of this risk, he was concerned that the takedown procedure wouldn’t work and that I would end up having to revert back to the ostomy and bag. I was faced with the reality that I would have to live with an ostomy and bag for the rest of my life. I was 38.  

The first year of adjusting to living with an ostomy is tough. Through trial and tribulations, you get used it. Eventually I settled into a routine and got used to having a bag. I still hadn’t told anyone about my ostomy outside of a few select people. I didn’t want anyone to take pity on me, but more importantly, I was embarrassed to share my story.

You talk about being uncomfortable in your video. Why is it important for you to challenge yourself?

When I was suffering from Ulcerative Colitis I was extremely limited in what I could do. I couldn’t exercise without getting up hours before going to the gym to use the bathroom. When I traveled, I ate very little and became a champion at pushing food around my plate. I was in constant pain and fought to get through each day. I wasn’t living life, I was simply surviving it. After my surgery, once I had my ostomy, I realized that I wasn’t limited anymore. Sure, the ostomy and bag pose their own set of challenges, but nothing like what I experienced with the disease. It was in that moment that I decided to start living life. 

I challenge myself because I don’t take for granted the life that I get to live now. I get uncomfortable to remind myself of the struggles that I dealt with for almost 20 years. It keeps things in perspective and drives me to be the best version of myself each and every day.

You’re participating in this run for Heather’s Mission. What is Heather’s Mission and how did you get involved?

In December of 2017, my wife Gianna and our dear friend Heather Christiansen formed the non-profit Heather’s Mission. Heather’s Mission is dedicated to finding a cure for Crohn’s Disease and Ulcerative Colitis. In addition to their work to find a cure, Heather’s Mission helps those that have been affected by Crohn’s Disease and Ulcerative Colitis by using its resources to provide a better quality of life for those living with these terrible diseases. 

People often ask about exercising and traveling with an ostomy. You’ll be doing both! Are you using any other pouching systems, and/or accessories that you wouldn’t use otherwise? 

I use the normal pouching systems and accessories that everyone else uses (I think). The one key addition to that is a Stealth Belt. I found this company within a few months of having my ostomy and they are great! They can make you a customized athletic ostomy belt that is perfect for exercising and traveling.

How have you been able to manage your ostomy while doing all of this training? Has it limited you at all?

The main thing that I need to be aware of is taking in the right amount of nutrition when I train, as anyone with an ostomy knows that your bag fills up the more you eat. I can typically manage this on short runs, but longer runs require that I eat much more than I’m used to. This means finding ways to change out my bag while I’m training. I have gotten very good at changing my bag quickly and in the most inconvenient locations. 

Do you have any tips for people living with ostomies that want to start living a more active lifestyle?

Yes, quit making excuses. I don’t take  for granted how hard it is to live with an ostomy, but it’s not as hard as simply trying to survive with the disease before you got the ostomy. Instead of looking at it through a negative lens, try looking at what has been given back to you. For me, that’s the ability to do so many more things than I could do without the ostomy. This includes attempting to run 7 marathons in 7 days on all 7 continents. On the more practical side of things, start doing little things and seeing how you do. If you are able to handle those smaller things, start moving on to bigger things. Don’t try to take on a marathon tomorrow, try to take a walk around the block. Not only will it make you feel better, but it will help you realize that an active lifestyle is possible.

How many marathons/endurance events have you done?

I’ve never actually run a full marathon. I know that makes a lot of people laugh. I have run quite a few half marathons, and in all transparency, I have run a few ultramarathons. But, for the record, I have never run a full marathon. I think running 7 full marathons in a row is great way to get introduced to that distance. I say this jokingly. I am doing a ton of training to get ready for this challenge.

How did you learn about this event?

I learned about the World Marathon Challenge (7 marathons in 7 days on all 7 continents) from my buddy Rick Steele. This guy is insane. Insane in a good way. In fact, I would like to amend my answer from the earlier question about how to live an active lifestyle. The way to live an active lifestyle is to become friends with Rick Steele. We have competed together over the past couple of years in all sorts of events. I can honestly say that I have never said “no” to Rick when he has asked me to do something. He asked me to run the World Marathon Challenge with him so I didn’t really have a choice. 

So, why this particular event?

Because it’s so over the top that people take notice. When I tell people, they get this stunned look and the typical response is “that’s not even possible.” That’s the sort of attention you need to make a difference. For me, the point of attempting the World Marathon Challenge is not to run 7 marathons over 7 days. The point is to raise awareness for Heather’s Mission and garner enough attention to make a difference in people’s lives. There is hope for those living with an ostomy. 

How have you trained for this event? Has training with your stoma been different than a traditional training plan? (hydration, regular source of calories, nutrition plan, etc.)

Absolutely. There is no way to attempt something like this without training. I was injured for a bit, so I’m just getting back to a normal run schedule. It’s not uncommon to run more then 30-40 miles a week. That will continue to increase and then taper down as I get closer to the event. I also hired a nutritionist to help me dial in my nutrition and hydration. It was surprising to me how little I actually understood about what to eat and drink to keep me operating at a high level.

How are you raising money and awareness for Crohn’s and Ulcerative Colitis?

Let me tell you about Awesome Ollie. Ollie a teddy bear that has an ostomy and a bag. Awesome Ollie was created by Danette Meredith.  Heather’s Mission found out about Ollie and immediately wanted to adopt him and get him in the hands of those that have an ostomy. At first, we thought that only kids would want an Awesome Ollie bear. Through our work, we have discovered that most adults with an ostomy find comfort in Ollie. I think this is because it’s like looking in the mirror. You see something that looks like you and you realize that you are not alone. Anyway, I got off track.  My goal with the World Marathon Challenge is to donate 1,000 bears. Each bear costs $50. This means I’m trying to raise $50,000. I have raised almost 200 bears so far. In order for me to hit my goal, we are going to need more exposure. That’s why I was so excited to hear from you. I’m hopeful that the people reading this blog will go to heathersmission.org to donate a bear.

What do you hope people will take away from your experience?

I hope that people will find some inspiration in what I’m doing. I hope that someone reading this takes on their own challenge. Even if that challenge is simply telling people about their ostomy or taking a walk around the block. Oh, and I hope people will donate a bear!

How can readers of OstomyLife get involved?

Go to heathersmission.org to donate a bear. Follow my journey through Heather’s Mission and through my Instragam @negretj. Most importantly, I would encourage them to go do something epic of their own. Create their own challenge and get uncomfortable.

Is there anything else you want our readers to know about you, living with an ostomy or Heather’s Mission?

I think I’ve covered it. If there is anything you or anybody else wants to know, please don’t hesitate to ask. I’m an open book, now.

Thank you to Jonathan for sharing his story and words of encouragement. Whether your goal is to run 7 marathons in 7 days on 7 different continents, or is to get back to the gym after surgery, we hope you were as inspired by Jonathan’s story as we were! We wish him luck and will be following his journey!

Jonathan Negretti video

Heathers Mission 

Serving Medicare Ostomates Nationwide
Dear Laura, I wear a two piece ostomy bag. I need help with concealing an ostomy bag. When I move around my shirt hikes up and the tip of the bag peeks out from under my shirt.
Tom
Hi Tom, I have a few suggestions that may help!
 
First, I'm wondering if a stealth belt would be a good option for you. This is a black belt that you can conveniently tuck your pouch...


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