Tag Archives: community

Will run for ostomy awareness

In just a few short weeks, World Ostomy Day 2016 will be here. And yes, it’s a day for raising awareness, but I think I have found a better way to celebrate the day… And that’s by doing things that I wouldn’t have been able to do prior to getting an ostomy. For me, that has been running.

will run for ostomy awareness 5k resilience

For the past 2 years, I have taken part in the WannaWearOne Ostomy 5K. The first year I did it from out of town as a part of the virtual race and last year I was able to compete in a local race in Durham, NC. (But that isn’t the only local race! Keep reading for more info!) ostomy run race resilience wannawearone This year, the race is taking on a different name: Run for Resilience Ostomy 5K. And I think that’s a very fitting title, because it’s about showing that having an ostomy does not have to stop you from doing whatever you want to do.

Last year’s race was not an easy one for me. I was about 3 months postpartum and I hadn’t been running in a very long time. But it was important to me to take part in this race and to do what I could to show myself and others that having an ostomy was not going to hold me back. I figured I was probably the last person in the race, but amazingly I was not, and I actually ended up winning 3rd place among ostomates in the race! (Check out my LIVE IN ACTION video below!)

So I encourage you this World Ostomy Day to get involved. The Run for Resilience is a great opportunity to do so. (And here’s a Where’s Waldo? opportunity for you: Can you spot me on the Registration page??) The run features races in 5 physical locations–in both the US & the UK–and a virtual race available for everybody to take part. Basically, the virtual race allows you to run wherever you are, while still being a part of the event and the awareness raised. Just be sure to post pictures using #IAmResilient! The races take place on different days during October, so check out the website for what’s happening near you.

Even if running isn’t your thing, find a way to do something. Think about things you couldn’t have done before your surgery. Maybe it is eating a certain food or sitting through a whole movie or going hiking. Find whatever it is and do it! Show yourself and the world that you are resilient and an ostomy is not going to hold you back!

ostomy run race resilience wannawearone

 

My son’s first Ostomy Day

My son will grow up in a different world. He will grow up in a place where having an ostomy is a normal thing. I mean, 1 out of his 2 parents will have one!

waylon ostomy 2He’ll know what a stoma is. He’ll understand there’s a difference between a colostomy and an ileostomy. He will celebrate World Ostomy Day. He will probably at some point blurt out to some stranger that mommy poops in a bag. He will know that an ostomy is not disfiguring. It is not gross. It is not debilitating. And he will know that it saved his mom’s life.

I pray that in knowing these things, he will understand that sometimes people are different from us and that’s okay. I hope he will always remember that you don’t know what’s going on in someone’s life below the surface, and that he will have patience and show kindness to everyone.
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World Ostomy Day Twitter chat

I have loved seeing all of the ostomy love this week! It’s been great being a part of the sharing of information and spreading of awareness. And it’s not over yet!

This Friday, October 2, I have the awesome opportunity to co-host a Twitter chat with the CCFA as a precursor to World Ostomy Day. We are going to have a great panel of participants, including a colorectal surgeon, a dietician and representatives from the United Ostomy Association and the Crohn’s and Colitis Foundation.

World Ostomy Day Twitter Chat
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We all have an invisible illness

Tomorrow starts off Invisible Illness week. As many of you may know, Crohn’s disease and ulcerative colitis are considered invisible illnesses because you can’t always tell what an individual is dealing with based on what is visible or how they look. The images I included in this post were all taken at times that I distinctly remember how bad I was feeling. You can tell in some of them more than others, but after living with a chronic illness for so many years, I have gotten pretty good and disguising how bad I may be feeling at times.

As I was thinking about Invisible Illness week, I was reminded of an interesting discussion we had at my ostomy support group a few months back. We talked a little about the thoughts that we all dealt with when we first knew we’d have to have surgery to get an ostomy and about the grief that is felt over the loss of a part of yourself. We finished up by discussing what we actually went through and how we made the decision to keep going. It wasn’t a lecture on what’s the right way to handle all of this, but simply a discussion of what we each had experienced.

At the meeting, a couple of people started talking about everything that they had been through and one guy listed off a dozen or so surgeries he had previously had for various reasons and finished by saying that he knows people who are much worse off. A lot of people starting chiming in about how somebody else always has it worse and that provided encouragement to keep going. I know that it is true that others have it worse than me. I fully admit that. On a regular basis I am faced with someone new who has been through so much that my surgeries and medications and hospitals stays and pain all seem very small. But I really don’t think that’s how we’re supposed to feel.

stephanie invisible illnessI think we (and by “we” I mean the patient/health community and maybe even society in general) have gotten too caught up in the “who’s got it worse?” game. First of all, there is absolutely no way that judge that and secondly, I don’t understand why we all feel the need to try to judge it. We attempt to categorize the level of awfulness that each person has to deal with when, in all honesty, we are in no position to make that kind of assessment.  Who’s to say that the person with the severe illness but a strong support system is any better or worse off than the person who has a mild illness and is all alone? All of our stories are so complex and interwoven into so many aspects of our lives that, unless we are in that position, we can never know what it’s like.

There is definitely a certain level of understanding that is present amongst people with the same diagnosis and even in people who are living with very different issues, but can understand chronic illness in general. But there can never be a complete understanding of another person’s journey. Symptoms that are simple for one person to deal with may send another person into a deep depression. I know it’s hard, but I think we need to stop comparing ourselves to everyone else and start seeing what we all really have in common. Part of what I love about being involved in the IBD & ostomy community is that I feel like we all see each other for what we have in common and that creates an intimate bond between us all. But even for those who are not living with Crohn’s disease or ulcerative colitis, chances are they also have something they are dealing with and learning to live with. Just because we don’t know what it is doesn’t mean it isn’t there.

We all have some sort of invisible “illness,” regardless of whether or not it is actually classified as an illness in the true sense of the word. We all have some sort of cross to bear that helps define who we are. It could be a diagnosable disease or an anxiety disorder or a troubled marriage or difficulty making friends. We all have something that we must try to overcome in this life. And whatever it is may be visible to others or may stay hidden, but that doesn’t mean it isn’t there. So regardless of whether you are living with an illness or dealing with some other difficulty in life, I encourage you to not think about who has it worse, but rather to remember what we all have in common.