Tag Archives: hope

I am nobody special

I really do like inspirational quotes. There are some people who are simply able to string words together in a beautiful way that can truly impact you and become a motivator to you. Like Ralph Waldo Emerson who said, “The only person you are destined to become is the person you decide to be.” Or in the words of Eleanor Roosevelt, “Remember no one can make you feel inferior without your consent.” I have definitely had times when I’ve been feeling kind of down and scanning through the pictures of quotes on Pinterest has helped give me that extra push I needed.

That being said, there are very famous quotes that may sound like an amazing revelation, but the more I think about it, I realize how untrue they are. I came across this one the other day and it made me stop and think…

you were given this life because you are strong enough to live it stephanie hughes stolen colon crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blogThe moment I read it, I realized how many times I have heard this quote or the sentiment that it involves before, but perhaps worded a little differently. “God chose you because he knew you could handle it.” Or, “You are so strong. I could never had made it through what you’ve been through.” I don’t believe any of that.

I don’t believe that I was destined to have Crohn’s disease or have my colon removed. I don’t believe that there’s a God in heaven who is picking and choosing people who are going to live their lives battling sickness. I don’t believe I am stronger or braver or more suited for dealing with the issues I have than any other person on this planet.

But I do believe that our society has opened the doors for diseases like Crohn’s disease and ulcerative colitis to come in. I do believe in God and in his ability to guide us through whatever mess we find ourselves in. I do believe that I am nobody special and that I have only done what any other person would do. I have pushed forward. I have smiled through the pain. I have scraped myself up off the floor and somehow put one foot in front of the other. I have found a way to keep moving. But that doesn’t make me special. That doesn’t make me stronger than anyone else. That makes me human.

We all have our things in life that knock us down and kick us while we are there. For me, that was Crohn’s disease. For others, it may be financial problems, or an abusive relationship, or a difficult child, or a learning problem, or a combination of things. But those people keep going.

And I know, if you were faced with the same issues I have been through, or if another person was given the same difficulties you have dealt with in your life, you both would do the same thing: You would keep living. And that’s what makes you strong enough for whatever this life gives you.


Out of the Bag: Running

stephanie hughes out of the bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon

I am not a runner. I know I sometimes sound like I am, but I’m really not. I have run in the past and I plan to run in the future, but I have never classified myself as officially being a “runner.” A runner is someone who really loves running. It’s someone who can’t wait to put their running shoes on and head out the door because the time they are running is one of the best parts of the day. Or at least that’s how I have always imagined what being a “runner” would be like. I am definitely not like that.

I don’t actually like running. I don’t get an extreme amount of satisfaction from traveling over long distances using nothing but my own two legs. I run because I can. I run because two years ago, I could hardly make it from my couch to the front door. I run because prior to my surgery, any time I got past a light jog, my colon would give me a very loud, “Stop!” And I train for half-marathons because I am one of those people who needs to have a goal in site to help keep me moving.
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Climbing mountains

I have been thinking lately about how much things have changed in the past couple of years. I honestly feel like I am a different person with completely different worries and concerns.

mountain trip pembroke virginia snow winter stephanie hughes stolen colon crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blogI just spent this weekend on a trip to the mountains with my work. It was a play trip that we got as a bonus for hitting one of our goals last year. And it was really a lot of fun.  I haven’t been at this job for that long, so this was one of my first opportunities to get to know everybody in a more relaxed setting.  I am very thankful to work in a place where I can enjoy a weekend away with friends.

But even more than that, I am thankful for the ability to enjoy this weekend without worrying about how I would feel or all of the things that could have happened.

We rented a full-size bus for this weekend and took it on a four-hour drive. A couple of years ago, that would have terrified me. There was a bathroom on the bus, but that is the worst nightmare for someone with Crohn’s disease or ulcerative colitis. Driving on someone else’s terms without an easy ability to jump off of the next exit to find a bathroom used to be one of my biggest worries. In this scenario, I probably would have driven all by myself just to have the option of finding a bathroom when I needed it. But I didn’t have to worry about that this weekend. Sure, my bag started filling up along the way, but I had the ability to empty it on my terms.

I think we all can agree that we’d much rather use the bathroom in our own room, rather than a public one. My room was up a flight of stairs and down a hall and not once did I need to run down that hall and hope that my room key would work the first time and get the toilet in time. It was easy to sneak away when I needed to go back to the room.

I’ve mentioned that I am training for another half-marathon in a couple of months, so I knew I needed to stay on schedule this weekend. Fortunately, there’s a group of runners that I work with, so we decided to go for a trail run yesterday morning. We went out for about an hour and run peak view snow fog winter mountain trip pembroke virginia snow winter stephanie hughes stolen colon crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blogran in the snow and made our way to the top of the highest peak on the grounds. It was a long, hard incline to get to the top, but the view was so worth it! (The picture doesn’t do it justice.)

The last time I went on a mountain trip was right about three months before my surgery and some friends and I rented out a cabin for the weekend. We were at the very end of a long winding road and there was one point that weekend where the girls decided to go for a walk down the mountain. I made it to about the end of the driveway when I knew I had to turn back. And unfortunately, it was a very long driveway. So I went back by myself and it took everything I had to get back to the top of that hill and hold everything in at the same time. It was miserable.

But this time, I made it all the way up that hill and the only problem I had was the leg strength it took to get there! And standing on top of that mountain, I was so thankful that I could even make it there. I felt like I have come so far since that other trip on the same weekend just two years ago. And the four mile run it took to get there seemed to really represent that.

When I say that getting an ostomy gave me back my life, I mean it with all of my heart. I would not be the same person I am today without being willing to give up one my vital organs. The funny part is, I actually had one point this weekend where my bag started to pull off and I had to make a run upstairs to change it before it started to leak, and I didn’t even care. It seemed like such a small trade-off for what I have been given. For the first time in my life, I can look at that mountain and know I will make it to the top.

Ostomy = Old news

The biggest hurdle, in my opinion, in getting an ostomy is simply becoming comfortable with it. It takes time to figure out how to take care of it and how to prevent/deal with leaks. It’s not overnight that you learn how fast your bag will fill up and how often you should empty it or change it. And it’s really not easy to get to the point that you forget you have an ostomy. But for me, that’s been the goal.

From the beginning, I hoped I that I could get to the point where I didn’t really think about having an ostomy. That I could forget it was event there. Obviously, you are constantly reminded of having an ostomy just by feeling it getting heavier and having to empty is multiple times a day, so you can never actually forget about it. I am simply referring to being in a place where doing those things are just second nature and you don’t actively think about that fact that you poop in a different way than other people. And there are times that I get to that point. It’s definitely not every day or even all day, but there are plenty of times that I just go about my business and take care of it when I need to and it doesn’t actually occur to me that most people aren’t dealing with the same thing every day.

But now, I’m not so convinced that’s what my goal should be.

stephanie hughes ostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy bag blogThere have been times that I have gotten so busy and distracted by everything going on around me that I stop taking my ostomy into consideration and essentially just forget that that it’s even there. So that’s great! That’s the dream, right?! But, it’s actually gotten me into some trouble at times.

I have eaten hard to digest foods that I have not spent time chewing. I have had more wine to drink than usual and have not made up for it by drinking more water. I have let a leak under my ostomy bag sit for longer than I should have since it wasn’t leaking outside of it. When I do this, it often leads to a mild blockage or nausea or multiple bag empties that usually come along with not thinking things through. I might have to deal with painful and irritated skin around my stoma. And I could have avoided these things if I had just taken my ostomy into consideration in each of these scenarios.

I’m beginning to think that forgetting about my ostomy should not be the goal. But rather, coming to terms with it and accepting it for what it is: a part of my life. Rather than trying to forget about it, maybe actively thinking about it during the day will just serve as a reminder than I am different, and that’s okay. I mean, let’s be honest, no matter what you do, you will always have an ostomy bag hanging there as a constant reminder that, oh yah, you have an ostomy. But you know what? Maybe that’s not such a bad thing after all.