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

 

Finding love with an ostomy

Every so often I will hear a conversation about romantic relationships while living with an ostomy. Often someone will say they were left because of their ostomy, or that they’ve resigned themselves to being alone because no one could love them now. And I have one thing to say to them: STOP IT. An ostomy does not make you unlovable. It doesn’t make you anything other than another human with your own set of experiences. That ostomy is simply a symbol of the life you have lived and who you have become through those experiences.

Now full disclosure before I get too far into this: I was married when I went through surgery to get my ostomy, so I have not gone through the dating process with one; however, I believe what I am writing is true no matter what point you are at in a relationship.

Sometimes, it’s not the ostomy.

StephJarrod_hands copyWhen you go through something that necessitates getting an ostomy—whether it’s a chronic condition like IBD or some sort of trauma—that’s a lot for a person to handle. It may bring up feelings of “why me?” or resentment towards God or the world. Constant pain can make anyone feel frustrated. Having difficulty after surgery can lead to depression, feeling sorry for yourself, and lashing out at others. All of these can cause issues in a relationship. If you were someone whose partner left after your surgery, I am not at all saying that you are at fault. What I am saying is that going through this can change people, and when people change, the relationship changes and sometimes that relationship no longer works. So, if you were someone who was left and you felt they left because you now have an ostomy, there may be a lot more at play than simply that. Continue reading

A new meaning for World IBD Day

I realize that today is World IBD day, but that is no longer the significance that this day holds for me. It was one year ago today that I was first admitted to the hospital with an intestinal blockage during the third trimester of my pregnancy. It was the beginning of the end of my pregnancy.

world ibd day inflammatory bowel disease crohn's ulcerative colitis ileostomy stephanie hughes anniversary pregnancyTwo days before, I had sent out a tweet about feeling a little blocked up. Honestly, at the time I didn’t think it was that big of a deal. It felt like the number of other times I had a mild blockage that would clear on its own if I drank a lot of water and stayed away from fibrous foods. Even when I went to the ER last May, I really only went because I was pregnant. If I hadn’t been worried about my son, I seriously doubt I would have gone to the hospital. It was more about being extra cautious than actually thinking there was a problem. After about a day in the hospital, I already was feeling better. I remember my surgeon coming in to talk to me and telling him I felt great and didn’t see a reason I needed to stay any longer.

this is ibd postLittle did I know how much worse it would get over the coming days and weeks. Two days after being released from the hospital, I was in tears over the amount of pain I was in and would end up taking myself back to the hospital in the morning. And three weeks after that, my son would be here.

For me now, this day is a reminder of how much IBD can impact your life and the lives of the people around you. My pregnancy and my son’s birth did not go as I had planned. Thankfully, everything turned out well in the end, with a healthy baby and a healthy mom, but it could have gone another direction. I know if we decide to have more kids, I will go about things differently in the hopes of preventing another blockage. But truth is… with a disease like IBD, you never know what’s going to happen. And that’s why awareness is so important. So people have the information they need in order to make the best decisions. So others understand, even just a little bit, what it’s like to live with an unpredictable disease. And so one day a cure can save others from spending World IBD Day in the emergency room.

Why I freak out when I see one of these

Mouth ulcers. Or canker sores, whichever you call them. 

One way I could always tell when my inflammatory bowel disease was active was when I started getting mouth ulcers. I remember when I was younger and going through a rough patch of symptoms and I would have 20 or more ulcers in my mouth. It made it difficult to eat or even to swallow.

inflammatory bowel disease mouth ulcers stolen colon crohn's ulcerative colitis ostomyEven now, when my IBD is not causing symptoms, whenever one or more these pops up, I get concerned. This one in the picture is actually from biting my lip, but it’s taking a very long time to heal and that also worries me. I also have another on my tongue, that I can’t get a picture of, that has come and gone a time or two over the past couple of months. Also, about two weeks ago I had one of the roof of my mouth.

I know it doesn’t sound like much, but it’s enough to make me think twice about how I’ve been feeling and to get me to pay a little more attention to my health. That’s the thing about living with chronic illness: You’re never out of the woods. It’s never gone, you’re never cured. Sometimes it feels like you’re just waiting around for it to pop back up again.

I am very thankful to have had these years since my surgery without dealing with any major symptoms of inflammatory bowel disease, but there is always this little part of me, in the back of my mind, that worries about those symptoms coming back. It was a big concern during my pregnancy, since your body goes through so much change during that time, it can kick up a reoccurrence of symptoms. Again, I’m thankful to have made it through my pregnancy without that happening. 

We live in this constant state of uncertainty, and it’s difficult to get used to that. Seriously,  how do you even begin to deal with that?? I honestly don’t know. I guess you just eventually get used to that uncertainty and start to mistake it for normalcy. Regardless, this is why I try to live my life in the moment. I will readily admit that I am not always successful at that. I am a major planner and like to know what I’m getting into, but I’m trying to be present in each day. Today’s a good day, so I will enjoy it and try to live it for all that it’s worth. And if tomorrow is not a good day… I guess we’ll deal with that tomorrow.