Category Archives: Surgery

5 years: The resentment anniversary?

It has been 5 years since I had my surgery to get an ostomy. It’s funny, I’ve been looking forward to this day because 5 years seems like such a good marker of time. And my ostomy has made such a profound impact on my life, that I felt like it would be a time to celebrate. Five years of not living with active Crohn’s disease; five years of being able to take part in the activities I want to; five years of not living in fear of finding the closest bathroom. But this has ended up being an interesting anniversary for me.

If you look back at my previous anniversary posts (One, Two, Three, Four), they are mostly filled with gratitude and hope. This year, I feel a bit more resentful and not wanting to celebrate my ostomy or what it has given me the past few years. I have not gotten into it yet on my blog, but I will soon tell you the full story of my second pregnancy and the complications that I have been having due to my ostomy. In a nutshell, I just returned home from spending a week in the hospital due to a pretty severe intestinal blockage. It’s actually pretty amazing that I did not end up requiring surgery in order to relieve it. Currently, I have a catheter inserted into my stoma to help ensure it does not collapse or get squashed between my uterus and my abdomen. It’s painful. It’s uncomfortable. I feel exhausted.

And now I am on a nearly entirely liquid diet, which is not only boring, but I’m hungry pretty much all of the time. Plus, I’m worried about getting enough calories during the day, not only to support myself, but to support my baby, too, who is not due for another 11 weeks. Top it off with a 2-year-old who I am home with much of the time and just don’t feel I have the energy to keep up with him, and it’s also difficult to move too much without hurting myself.

Suffice it to say I’ve been feeling pretty sorry for myself recently. I think I’ve been going through a mourning period of having to let go of the plans I had for this pregnancy and the hopes I held onto for a spontaneous birth close to my due date. I had wanted to spend these final weeks relishing the time I have with my son before he’s joined by a sibling and enjoying our life as a family of three. But none of that is going to happen the way that I had planned.

But you know, I’ve also realized that life usually does not go the way you planned. I am not the first woman to deal with complications during pregnancy or concerns about taking care of her other child. I also see how blessed I am that we’ve been able to handle the issue with this catheter, despite how uncomfortable it is. I am blessed to be home with my family, able to move around, and I’m not confined to bed rest at the hospital for weeks, as many women deal with during pregnancy. I am blessed to have amazing family and friends close by who have dropped everything to help us out and make sure that we have everything we need.

So instead of being resentful today, I am trying to focus on the many positives that I have going on in my life: I have a beautiful new baby on the way that I am so excited about and my ostomy played a huge part in me being able to do that, other than dealing with the blockage issues I am healthy, I am not confined to a hospital bed, I have amazing support to help me get through the coming weeks. And I know whenever this baby arrives and in whatever fashion that we will cherish the time we have together. When I think back to when my son was born, and the four weeks I had expected to continue being pregnant, I am thankful for that extra time we had together. And I’m glad to live in an area with some of the best doctors and hospitals who I know will take the best care possible of my little one, no matter what happens.

This anniversary is a little different from the ones previous, but it may end up being one of the most significant ones I experience. Life is not always going to go the way that you want, and it has a way of trashing many of the best laid plans, but that doesn’t mean that all is lost or that we should just give up. My ostomy has given me a great 5 years, and I look forward to what it will allow me to accomplish and experience in the future, despite the discomfort it may be causing me for the time being.

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!

2015 at The Stolen Colon

I’m always amazed at the end of each year as I look back and realize all that happened in the past 365 days. Obviously 2015 held even bigger changes than previous years as I announced  my pregnancy at the beginning of the year and gave birth (amid some ostomy drama) to my son. And if that wasn’t enough, in my personal life, we settled into our new home that we moved into just before the beginning of the year, I decided to leave my full-time job in favor of working from home and getting to spend time with my kid, and celebrated 5 years of marriage to my husband.

I thought I’d take this chance to highlight some of my favorite posts from the past year. I actually had a hard time narrowing this down because there were a lot of posts that really meant a lot to me this year. It’s pretty pregnancy / baby dominated, but I’m OK with that!

2015 stolen colon year in review ostomy baby crohn's disease ileostomy ibd inflammatory bowel disease
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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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