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If I never had Crohn’s disease…

if i never had crohn's disease

If I never had Crohn’s disease, I would never have known how much pain one internal organ can cause.

If I never had Crohn’s disease, I wouldn’t have missed out on so many nights out with friends.

If I never had Crohn’s disease, I wouldn’t know so well the awful sounds and smells that fill a hospital ward.

If I never had Crohn’s disease, I may never have known how far my family would be willing to go and all that they would be willing to do for me.

If I never had Crohn’s disease, I would never have filled my body with medical-grade poison, because it was the lesser of two evils.

If I never had Crohn’s disease, I wouldn’t have spent so many nights crying when I was in middle school because I felt so alone.

If I never had Crohn’s disease, I may never have learned to have true compassion and empathy for what others might be going through that you don’t see.

If I never had Crohn’s disease, I may have spent a good deal of my life wrapped up in petty arguments because I never understood that there are more important things in life.

If I never had Crohn’s disease, I wouldn’t have sped home so many times hoping I could make it to the bathroom.

If I never had Crohn’s disease, I definitely would have had far fewer times where I didn’t make it to the bathroom.

If I never had Crohn’s disease, I may never have realized what a blessing each and every day is.

If I never had Crohn’s disease, I never would have gone through two separate surgeries to remove my colon and my rectum.

If I never had Crohn’s disease, I never would have met so many amazing people who inspire me every day.

If I never had Crohn’s disease, I never would have found my voice in a world where people don’t want to talk about pooping into a bag.

If I never had Crohn’s disease, I wouldn’t have spent a month of my 13th year in the hospital, where I never would have met a wonderful nurse who told me all about China and I never would have become fascinated with that country and its language. Which means I likely never would have attended the University of North Carolina (since I only applied for their Asian studies program… which I didn’t end up doing, but that’s another story for another day) where I never would have met so many awesome people or had such incredible experiences. And I never would have gone out dancing with one of those friends one night and met a guy named Jarrod, who I never would have married and I would not be carrying this incredible gift of a child right now. And only God knows what’s in store for this child and all of the things that will happen because of this new life.

So you see, even if I had the choice to go back and live a life free of Crohn’s disease, I couldn’t do it. This disease has played such an intricate part in the creation of who I am over the past three decades that I do not know who I would be without it. Would I be happier? Maybe, but I doubt it. I have a family and friends who love me and have stood by me through some very difficult times, so I know that they will always be there for me. I have found an incredible community of people who have lived through so much and come out stronger on the other side, and I find them to be the most beautiful people in the world. I have learned that you never know what someone is dealing with behind the scenes, and that has given me patience and taught me to not always take everything at face-value. I have learned to be thankful for everything that you have been given, because you never know what tomorrow will bring. I have learned that sometimes shit happens and life sucks, but it’s what you do in those moments that matters most because that’s what makes you who you are

I realize that what I am saying may be controversial, so if you don’t feel the same way, I completely understand and I can’t blame you one bit. There’s nothing wrong with that. I realize that my story is not everyone’s story. I’m not belittling anyone else’s experience. This is just one girl’s opinion and is by no means a commentary on what anyone else should or shouldn’t do or feel. In fact, not feeling the way I do is probably a much more normal reaction than mine. But this disease has taught me so many things… about myself, about other people and just about life in general.

This disease takes a lot away from you: your energy, your ability to go to the bathroom on your own schedule, your dignity, your immune system, your blood, your feeling of safety, your desires, your goals, some friends, your health, your freedom. But it has also brought me to where I am today and I am so thankful for that. Yes, this disease takes a lot, but I have found that it has given me many things, too. And the things it has given me I would not give up for anything. Not even a healthy colon.

Reflections and resolutions

New year 2015 celebration resolutions goals The Stolen Colon ostomy ileostomy urostomy colostomy Crohn's disease ulcerative colitis inflammatory bowel disease ibd colon stephanie hughes blog

This is the time of year where we always look back at the preceding 365 days to think about all that we accomplished (or perhaps didn’t) and look ahead at all of the potential there is for the next 365 days. I probably say this every year, but I love New Year’s! I love any opportunity that I am given to start over, refresh, reinvent myself. I am a big believer in new beginnings and second chances.

I also tend to be fairly quiet around this time of year, as I come off the high of holiday craziness and spend some time thinking about what this past year held, the accomplishments and the disappointments, and about where I want to go next.

I took a look back at my goals for this past year that I set out on January 1, 2014. My 5 main goals included: Implement changes for The Stolen Colon, Get organized/save money/stay on budget, Stay focused on another semester of grad school, Run my third half-marathon, and Plan an amazing vacation. I am very pleased to say that I accomplished every one of these goals in the past year. Maybe not as fully as I would have liked at times, but I’m glad to be able to read through this and know that I did follow through on some things. What I’m disappointed about is that I really didn’t stay focused on these things. Some of them were things that just naturally happened, but I really wish that I had continued to remind myself of these goals and not just hoped that they would happen at one point or another.
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My favorite posts from 2014

2014 has been a busy year. I got settled into a new job that has since morphed into something completely different from when I started at the end of last year. I completed (read: survived) my first full year of grad-school. I finally made it to Europe and spent 10 days eating fabulous pasta and drinking delicious wine. We remodeled our kitchen. We sold our first home and bought a new one. I celebrated my second year of life free of my colon and had my first year in three years without any surgery!

I’m so proud of all that happened in this year and what has been accomplished, especially on The Stolen Colon. So I wanted to take a moment and go through some of my favorite posts from the past year. (In no particular order…)

stoma colon ostomy ileostomy ileoscopy hospital procedure IV stomach stephanie hughes stolen colon crohn's disease ulcerative colitis inflammatory bowel disease ibd blog ostomy best friends frenemiesHow my ostomy and I became frenemies: Realizing this year that I don’t have to be 100% OK with my ostomy 100% of the time was very freeing. I have found that coexisting is a much more attainable objective than feeling as if we have to become best friends.

Wearing swimsuits with an ostomy: This was one of my first video blogs and now has become a favorite post. I was so excited this year to find some cute bathing suit options that make me feel comfortable and excited to spend time at the beach or pool. I found several great options for still enjoying the summer by the water.

The first time I saw my stoma: This was one of those blog posts that I wasn’t sure where it was going until I was in the middle of writing it. I see now what a defining moment it was for me to see my stoma for the first time and to see how I have progressed past that feeling of loss and perhaps a bit of disgust to acceptance and gratefulness for the life it has given me.
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Fighting against myself

I had a rough run this past week. It was a 10K here in Raleigh that I had signed up for a while ago. A man, was that a hard 6 miles.

It was my own fault; I fully admit that. I hadn’t trained well, I hadn’t been staying hydrated, I didn’t warm up a lot beforehand. I also spent the previous week at a trade show for work which meant three days of standing for eight hours straight in high heels. Not the ideal way to spend the week before a race. Plus, it was cold and rainy outside. Basically, it was the perfect storm of awfulness.

This was also my first 10K. Actually, it was my first race that was not a half-marathon. Half-marathons are all about pacing. 10Ks are a bit different. Too short to need to put as much focus on pace, but too long to just run all out. I had planned to try to focus on training on getting a little more speed. I was simply hoping to break the 1:00:00 mark. But a number of things going on in the past few weeks and months had gotten me out of the habit of running and training as I had planned.

10k race run stephanie hughes out of the bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon top 10 reasons to have an ostomy ileostomy colostomy urostomyAnd the moment I started running this race, I could tell it was not going well. My legs felt heavy and I was immediately exhausted. I also did not run with my phone, which I usually do. I got the new iPhone and it doesn’t fit in the pocket very well, so I figured I would just go for it without timing myself and see what happens. (Yah, I know, I need a watch.) I also somehow ended up at the front of the pack when the race started. It was a small race, only like 115 people, but still, I am not a front of the pack kind of runner. So I immediately got myself over to the side so the other faster people could pass, but then I realized just how depressing it is to see dozens of people passing you along the way.

I kept telling myself to just keep moving. It was hard. The course was very hilly, especially at the Start/Finish line area. I felt like I was moving at a snail’s pace. I kept trying to figure out in my head how long it was going to take me, since I didn’t have my phone to help me pace. I felt for sure that I was doing like a 13:00 mile, which is slower than I’ve run for all three of my half-marathons.

Much to my surprise, however, I ended up running across the finish line at 1:02:54. I was both excited that I was not running nearly as slow as I thought (It was actually a 10:08 pace), and also frustrated that I was so close to my goal and didn’t quite make it. I knew that if I had trained just a little better or if I had been pacing myself during the race, I probably could have cut off those 3 minutes. But of course, I can’t go back.

I am not fast and let’s be honest, no matter how hard I train, I will never be a race winner. I am just not built for it and I am fine admitting that. But I do at least want to feel like I am a competitor. As I was running and watching so many people pass by me and feeling sorry for myself, I had to keep reminding myself that I was not there to race anybody. I was only racing against myself. I was only fighting my own body.

And you know… isn’t that what we have spent so many years doing? Pushing ourselves… Moving on in spite of the pain… Searching frantically for the finish line… And that’s part of what I love about running. It’s such a great metaphor for our life and our journey through it. It’s not always easy, it’s not always fun, and sometimes it just downright sucks. But if we keep going and keep pushing ourselves to take that next step, we can get to where we’re going. And no ostomy or Crohn’s disease or ulcerative colitis can hold us back.