Tag Archives: stoma

What is now in place of the colon that was stolen.

What’s “normal” 4 years after an ostomy?

ostomy selfie stephanie hughes stolen colon crohn's disease inflammatory bowel diseaseHow can 4 years seem so short and so long at the same time? It seems like just yesterday I was scared and feeling horribly sick preparing for this surgery, but at the same time, I almost can’t remember what it was like beforehand. It’s been 4 years… 1461days, to be exact, that I have been living with my ileostomy.

The good news is, throughout that entire time, I have never regretted my decision. Yes, I have had times that I resented having to make the decision in the first place, or wished none of this had ever happened to me, but that’s not anything I can change. Based on where my life has brought me and the decisions I was faced with, I am so glad I made the choice that I did.

Living with an ostomy is a funny thing. Like anything else, after time you get used to it and you stop thinking about it all of the time. It’s like my phoenix tattoo I have on my forearm. phoenix tatI see this tattoo every single day. It is always right in front of me. Yet, there are many times that it will suddenly catch my attention and I will realize that I haven’t noticed it in a while. It has simply become part of the scenery of my life.

I feel the same way about my ostomy. Obviously, I have to deal with it every day, multiple times a day. It’s impossible for me to go a day without me thinking about it at all, yet I still find at times that I have “forgotten” about it for a little while. Or at least I haven’t paid any more attention to it beyond the usual daily maintenance. It, too, has slipped into the background.

Obviously it’s not like this every day. I still have times where it very loudly announces its presence in the form of a leak, or itchy skin, or a literal loud noise. But after 4 years, it’s so ingrained into me as part of my normal routine that it often takes something like that to make me pay a little extra attention.

And that is what my normal has become. I truly don’t remember what “normal” is—at least normal for the majority of the population. I don’t remember the last time I had a normal poop and I definitely will never have one again. And it’s thoughts like this that still freak me out a little bit. Never. It’s such a big word. It’s so… final.

Despite how much of a blessing my ostomy has been and how much it has changed my life for the better, I still struggle with the nevers and forevers. I wonder if I will ever get used to them. I don’t honestly know. Ask me in another 4 or 40 years and maybe I can tell you then, or perhaps I’ll still be wondering.

This is a major reason I try to simply take it a day at a time. When I think about my future, I don’t think about my ostomy. I’m not sure if it’s a good or a bad thing. I think it’s good because I’ve never wanted it to consume my life to the point that it’s all I think about and it’s a constant, painful reminder of how my normal compares to other people’s interpretation of normal. The fact that I don’t automatically think about it when I picture the future makes me feel I am holding to that. But I also realize that when I do consciously think about having an ostomy for the rest of my life, it still hits me kind of hard. It’s almost like there’s still this small part of me hoping that one day I would no longer have it. (Trust me, though, there’s nothing left in there. It’s not going anywhere!)

Even so… while it may be difficult imagining the rest of life with an ostomy bag, I will always be thankful for it and how much it has changed my life. The past 4 years have absolutely been some of the best of my life and I am so thankful that my ostomy has allowed me to live it much more fully than I had been previously. So I guess here’s to the next 4 or 40 or 400 years with an ostomy!

The Stolen Colon turns 4

It was 4 years ago today when I started The Stolen Colon. At the time, I was dealing with some really severe Crohn’s disease symptoms and I wasn’t even sure yet what I was going to do as far as surgery or treatment or anything. I say I wasn’t sure, but really, I think I knew surgery was inevitable, but I wasn’t able to fully admit that quite yet. (I mean, why else would I call my blog “The Stolen Colon” if I didn’t know what was coming??) I remember after leaving the consult with my surgeon to set up the surgery, I asked him how soon I needed to let him know if I wanted to cancel so as to not mess up his schedule too much. I knew I wasn’t going to cancel, but knowing that I wasn’t 100% committed just yet gave me a little peace of mind.

I started this blog because I was scared. I was scared of the surgery and what having an ostomy bag would mean for my relationship, my self-esteem, and just my life from that point on. I can’t remember the particular moment that I decided I wanted to start a blog, but I remember searching for people who had been through this surgery before me. I found a few brave individuals out there who were sharing their stories and I will always be grateful for them. But even then, I didn’t find enough. I remember thinking, “If I have to go through all of this, I at least want it to be helpful to someone else.”

the stolen colon blog post ileostomy crohn's disease inflammatory bowel ulcerative colitis stephanie hughes

I felt very alone during this time. I felt like no one could understand what I was going through and the decision I was having to make. So I started writing about it. It was partly to help myself process everything, and partly because I didn’t want other people to feel as alone as I did. I had no idea at the time the world it would open up to me.

My first post was titled: The blog I didn’t want to write. And that still rings true. I never wanted any of this. I never wanted to be “that girl who blogs about her ostomy.” But in doing so, I realized how many other people could understand what I was going through and had dealt with the same uncertainties I had.

You may also notice that I focused on Crohn’s disease in that first post, because that’s what I knew and what I was already comfortable with. I don’t know that I had much to say about ostomies at the time other than I didn’t want one! It’s amazing to think about how much has changed in just 4 years.

By starting The Stolen Colon, I have been given an opportunity to use what I have learned and experienced and help others not feel the same way I did when I was going through with my surgery. I am so happy that there are many more advocates writing and talking today, and there is a much bigger support network for those living with an ostomy. And while I may not have wanted this, I am glad for where starting this blog has led me to today. And I look forward to where it will go from here.

My son’s first Ostomy Day

My son will grow up in a different world. He will grow up in a place where having an ostomy is a normal thing. I mean, 1 out of his 2 parents will have one!

waylon ostomy 2He’ll know what a stoma is. He’ll understand there’s a difference between a colostomy and an ileostomy. He will celebrate World Ostomy Day. He will probably at some point blurt out to some stranger that mommy poops in a bag. He will know that an ostomy is not disfiguring. It is not gross. It is not debilitating. And he will know that it saved his mom’s life.

I pray that in knowing these things, he will understand that sometimes people are different from us and that’s okay. I hope he will always remember that you don’t know what’s going on in someone’s life below the surface, and that he will have patience and show kindness to everyone.
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World Ostomy Day Twitter chat

I have loved seeing all of the ostomy love this week! It’s been great being a part of the sharing of information and spreading of awareness. And it’s not over yet!

This Friday, October 2, I have the awesome opportunity to co-host a Twitter chat with the CCFA as a precursor to World Ostomy Day. We are going to have a great panel of participants, including a colorectal surgeon, a dietician and representatives from the United Ostomy Association and the Crohn’s and Colitis Foundation.

World Ostomy Day Twitter Chat
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