Breaking down the ostomy barrier

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

Ostomies get a really bad rap. Most people you ask about an ostomy will likely not even know what you’re talking about, and those that do will probably say something like “gross” or else feel sorry for you. I remember going to a doctor one time and was going through my medical history with the nurse and when I said I had an ostomy, she said, “Oh I’m sorry. ” And I was like, “I’m not!”

I hear people all of the time with Crohn’s disease and ulcerative colitis, myself included, complain about the stigma that comes along with having an inflammatory bowel disease. You have to deal with comments like, “You don’t look sick” or “Isn’t that where you have to go to the bathroom a lot?” And it’s true, there are a lot misconceptions that IBD is just a bad stomach ache or that it isn’t that bad just because you don’t match most people’s definition of “being sick.” But what frustrates me is that the same people who complain about being stigmatized for their bowel disease are the ones who are passing judgement on having an ostomy.
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What inspires you?

I’ve been feeling a little stuck lately. A little uninspired. Even as I’m writing this post I keep changing and deleting and rewriting because it’s all sounding… wrong.

I’m at a point in my life where I’m not exactly where I want to be. And that’s not to say that I’m not happy. I have a wonderful husband and family; I have a great community of friends, both in everyday life and online, that mean a lot to me; I have more blessings than I can count and I’m very thankful for them.

I think I’ve had a hard time finding my “place.” Where do I fit in? What was I put here to do? I think having the Stolen Colon has been the one thing that has really gotten me through because it’s something that I feel I can contribute to and possibly make a difference with. It’s something that brings together everything I love into one place: writing, helping others with Crohn’s/IBD/ostomies, creativity. And if I could spend all of my time working on all of those things then I don’t think I’d feel this way.
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In the name of full disclosure

Yesterday marked exactly 7 months since I started The Stolen Colon. And in those months, I have tried my best to be very open and honest in everything I do.

I know that I deal with some difficult subjects on here. IBD is a difficult subject. It is an embarrassing subject… and I was embarrassed for a long time. I didn’t even talk to my husband about the things I was going through because I was afraid he would look at me differently.

So when I decided I wanted to share my story, I wanted to do it right. I wanted to not hold anything back; to talk about the good and the bad and the completely awful. It is very easy to talk about those intimate thoughts when you’re sitting on the other side of a computer (at least for me). But something hit me hard the other day that I wasn’t expecting.

A friend that I’ve met in the ostomy community online asked me to review a product. I happily accepted and tried it out. He asked if I wouldn’t mind sending some pictures of me using it as well, and I said, “of course.” But when it came time to do it… I got a little wigged out. I suddenly realized that, in all of this time, I haven’t taken any pictures of myself with my ostomy showing.

I have always planned to. I don’t have a problem with it. But once the opportunity actually came up, I wasn’t sure how to handle it. I started over-thinking everything and I couldn’t come up with a good solution. Should I take it of myself or should I ask my husband to? Should I show the bag itself or put a cover on it? Should I let it peek out from under my shirt or should I wear something that shows it all?

It wasn’t until he asked me about the pictures again that I realized I was nervous. I’m not ashamed, that has never been the issue. In fact, I’m very proud of it and the life it has now allowed for me to live. And I’m not scared any more.

Stephanie Hughes ostomy bag stolen colon blog crohns disease

Me and my custom “The Stolen Colon” bag cover from OstomyBagHolder.com

Confession

I’ve had a rough couple of weeks. Several things have happened that really brought me down and had me frustrated with my life and with myself.

It’s amazing. The week after I finish a month long series on self-esteem, I get a major blow to mine and I just crumple. That’s why I haven’t been around too much recently. I haven’t wanted to really be around anyone. I’ve wanted to crawl into a hole somewhere and feel sorry for myself.

I think I tried to bottle things up too much and not work it out that I finally got to the point where it started to eat me up. Even now, I still don’t want to deal with it all, but I know I have to or else I’m only going to feel worse. I’ve been focusing now on not letting it get to me so much. Just because things haven’t worked out the way I’d planned and I’ve made a few mistakes along the way doesn’t diminish who I am as a person. I need to be a little better at rolling with the punches and not letting the small things get to me.

So I’m trying to re-focus things now. I want to start going after the things that really matter to me. I’m going to work at hard at becoming the best me that I can be and not settling for whatever comes along. It may be a little difficult for a while, which is why I’m so blessed to have such a supportive husband who wants me to be happy. And that’s all I really want… to do the things that make me happy. I’m tired of wasting my time on things that don’t.