Tag Archives: Crohn’s disease

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

 

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.

Thoughts on motherhood & ostomies

Being a mother, in many ways, is just how I imagined it would be. It’s fun, challenging, exhausting, full of love and snuggles. But I don’t think I ever could have imagined how strongly each of those feelings and emotions would impact me. It’s more fun, more challenging, more exhausting than I ever could have anticipated.

mothers day ostomy stolen colon stephanie hughes crohn's disease inflammatory bowel disease

My son is coming up on turning 11 months old this week. As I have gotten to know him over those months, I have learned a lot, both about myself and about parenthood in general. I have found that I can’t take my eyes off of him for more than a few seconds or he will make a break for the stairs. I have learned that no matter how good of a job I think I do at keeping stuff out of his reach, he will always find the one thing he shouldn’t be playing with. I have learned that my son’s laugh is the most incredible sound in the world. I have realized where I’m willing to take risks and where I am not. When previously I would have stepped on the gas to catch a yellow light, I now slow down and wait. Making that light may be worth the risk to my life, but it’s not worth the risk to his. It’s interesting to realize how differently you value and treat your own life as compared to your child’s.

Having a child certainly makes you look at the world differently. It’s as if everything you see is now filtered through a different lens. You think about what’s best for them, and how you can help them learn and grow. It also makes you think more often about the truly important things in life.

This past week, my son and I both came down with a cold. Nothing major, but just enough to where you feel pretty awful and you just want to sleep for a while. Well, as you parents know, kids don’t believe in taking a day to rest. I started feeling poorly after he was doing a lot better, so all he wanted to do was play and explore, while all I wanted to do was to take a nap. As he was staring at me, and starting to cry because I didn’t want to play, I thought about what it would be like if I was feeling run like this down all of the time. Those few days were difficult, but they were nothing compared to what so many individuals with IBD live through each and every day. It’s what I lived through every day for a very long time. It broke my heart to think of what it would be like if I had never had my surgery.

My son makes me thankful for my ostomy every day. It has allowed me to chase him around on the floor without feeling too exhausted. I can now break away for a quick moment to empty my bag, rather than spending a long time in the bathroom. I have the strength to pick him up and carry him around with me during the day.

On my first Mother’s day after his birth, I stop to think about what it means to be a mother. It’s about teaching your child how to navigate this world and to be a good and kind person. You show them how to love and be respectful of others. You give them the tools to make something of themselves and to chase after their dreams. But more than almost anything, it’s about being there for your child. And I am so thankful that my ostomy has allowed me to be there for mine.