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The first time I saw my stoma

Guest Post for WOCN Society Blog

I was very honored to be asked by the WOCN (Wound Ostomy Continence Nurses) Society to write a guest post for their blog. These nurses are a great resource for anyone going through surgery to get an ostomy and I am so appreciative of all they do. This blog reflects on what I was feeling right after my surgery and what I hope others will understand about what that experience is like.

It’s a very strange feeling to wake up after a major surgery and to find something foreign attached to your body. And I knew it was going to be there. (I can’t imagine what it would be like for those who went into emergency surgery and did not know what they were going to wake up with.) But I have to admit, I was pretty good at ignoring the bag that was hanging off of my stomach for a few days, before it was active and when the floor nurses were taking care of emptying it.

But then came the day when the WOC nurses came to see me.

Prior to my surgery, I had been given a lot of information about the surgery and about ostomies and I was also given an ostomy bag to take home. And sure, I held it up to my stomach to see where it would hang, but I didn’t actually stick it onto myself or practice cutting the opening. So when the WOC nurses came to see me, it was all new.

stephanie hughes stoma ostomy crohn's disease ulcerative colitis ileostomy colostomy urostomy inflammatory bowel disease ibd stolen colonI remember so well that moment they pulled off the bag and there it was: my stoma. It was the first time I had really seen it, other than a few glances at this red circle inside my new bag. I could see how big it was and how far it stuck out of my stomach and how… scary it was. I think I held my breath for the first minute, but I kept it together while the nurses were there, trying to focus on asking them any questions that I had. My ostomy was pretty active during this first changing, so I just dove right into some of the difficulties with managing one. The WOC nurses were great and showed me how to clean the area and about some of the accessories that would help me take care of it.

But once they had gone, I broke down. I sat there with my husband standing next to me and just cried. It was the first moment of feeling like “what have I done?” and being truly scared of how this would impact the rest of my life. Even as I’m writing this, I feel the tears coming to my eyes because I remember so well that feeling of loss and of helplessness in that moment. But I don’t think the nurses realized exactly how I was feeling. I’ve gotten pretty good at hiding pain and emotions over the years.

And I had great nurses all along the way. The nurse I had before my surgery spent a lot of time with me and walked me through the process of picking my stoma spot. I previously thought that my stoma would be low, as in below my pant line. She took the time to explain to me about placement and why it matters. She helped me to understand why the spot we picked was the best spot. And I still think it is.

stephanie hughes hospital surgery colectomy stolen colon ostomy blogAfter the surgery, I had two nurses who came to see me and help me with that first bag change. They came back a day or two later and let me change it so I could get used to doing it, but they were there to help me figure it out and remember all of the steps. They were kind and open to any questions I had about the bag itself and about living with it.

Even after going home, during one of my first bag changes I saw some blood, which of course freaked me out. I called the WOCN department and someone told me that it was entirely normal to see some blood, but if it got worse to come back to see them. She helped alleviate my fears and that was actually the only call I ended up making.

I know I’m not the only one who has felt lost coming out of surgery. And that’s what I want others to understand. When someone goes through this surgery where a part of them is taken away, it’s almost like a death in the family. You immediately feel like your life is changed and there’s no going back to the way it was. A piece of you is forever gone. That’s a hard reality to come to terms with.

And that’s what I think is so important for the people taking care of these individuals to understand. Even if the patient is very prepared for this surgery and even excited about going through with it, nothing can prepare you for what it’s like immediately afterwards, when you’re in a lot of pain and on a lot of medications and there’s this squishy red thing hanging out of your stomach. So understand that they are likely having a difficult time adjusting.

Keep telling these people know they are not alone. There is a great support group out there, both in-person and online. Reinforce that there are lots of bag choices and they don’t have to stare through a clear window at their poop for the rest of their lives if they don’t want to. Keep helping them discover all of the great places to look for tips and tricks on living with an ostomy.

But mostly, just keep taking the time. Take the time to help them feel comfortable and try to understand what they are dealing with. Take the time to talk with them about how placement of the stoma may affect their experience. Take the time to make them feel like they are the most important person in the world. This may be just another day for you, but for us, it’s the day that changes everything.

What is an ostomy?

The big question: What is an ostomy? Here’s your first lesson.

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An ostomy is basically a non-natural opening in your body by which a person releases waste. Through this hole, the surgeon will pull the end of either your small/large intestine or ureter, thus creating a stoma. These terms are sometimes used interchangeably, however, most often when someone is speaking about their ostomy, they are referring to the entire thing, but a stoma refers to the actual piece of organ that is outside of the body.

An external pouching system is used to collect the waste. In more simple terms, an adhesive bag covers the stoma and catches the poop or pee as it exits the body. The bags can then be changed out or emptied into a toilet.

There are 3 main types of ostomies: ileostomy (stoma is made from small intestine), colostomy (made from large intestine) and urostomy (made from the ureter and part of the small intestine). I’ll go into each of these in a little more detail later this week.

It doesn’t seem like particularly accurate calculations are kept, but it is believed that approximately 1 million people in the U.S. alone have an ostomy of some sort, with another 300,000 having surgery every year.

Reasons for needing an ostomy:

  • Inflammatory bowel disease: Crohn’s disease & ulcerative colitis
  • Colon cancer
  • Diverticulitis
  • Bladder cancer
  • Familial adenomatous polyposis (FAP)
  • Bowel obstruction
  • Trauma, accident, birth defect, etc.

An ostomy can be temporary or permanent. A temporary ostomy may be used if the intestinal tract needs time to heal and can be reconnected in the future or it can also be used as the first step in a two-part surgery to form an internal pouch. A permanent ostomy is sometimes needed when the entire colon has been removed, or at the very least the rectum, or when a reconnection surgery is not possible.

I do not pretend to have extensive medical knowledge, so some of this information was found online: UOAA, ASCRS, NIH

Our awesome ostomy giveaway winner

Before I announce this giveaway’s winner, I just want to say how moved I am by everyone’s responses this week. It has been really amazing to hear from some of you about how having an ostomy has changed your life. I am so thankful for all of your willingness to share your stories and to encourage me with your attitudes and acceptance of, let’s face it, a difficult thing. Thank you for sharing your stories! Here are some great excerpts from the comments that I wanted to include…

“I had my ostomy surgery a year and a half ago, and I still stand by it being one of the best decisions I’ve ever made in my life. I feel good.” – Anna

“I thought the life of an ostomate meant embarrassment, shame, looks of pity, etc but if folks are talking, let them talk. Hopefully they’re saying how my life is a testament of God’s mercy and divine grace. My outlook on life has been forever changed.” -Ava

“I received my ileostomy almost 2 years ago. It was supposed to be temporary, but after experiencing life without the pain, or being chained to a toilet I decided to keep my ileo.” – Carolyn

“My Ostomy has not only changed my life and health, but it’s brought some amazing people into my life. I’ve learned how to give back and love in a whole different way.” -Lori

You guys really are amazing! But, without further ado…

And the winner is giveaway prize blog stephanie hughes stolen colon crohn's colitis ostomy

Krissy Westcott!!

Congratulations, Krissy! Thank you so much for entering. Please just send me an email over to stephanie@stolencolon.com and let me know where I should send it to. Also, take a look at Awestomy’s site and let me know what item you want and what size, color, etc.

I am actually so excited that Krissy won because she is a brand new ostomate! She just had her surgery about a month ago and is already seeing a big change in her life. Krissy, I am so glad to hear that you’re being able to keep up with your son’s activities since your surgery. Now get pick yourself out something pretty!

Much love to all of you again for your support and taking part in my giveaways this month. I’ve had a lot of fun with it and I hope you all enjoyed it, too. I’ll be looking forward to doing some more in the future. Happy Holidays, everyone!

And thank you again to Awestomy for being a part of this.

Out of the Bag: Flying & Airport Security

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I have written a post before about my experience flying with an ostomy, but in the year or so since then I have flown a few more times  and had a few different experiences. In just the past month I’ve been on a plane twice, so I figure it’s about time for another post.

airport plane gate flying travel out of the bag ostomies advice tips tricks stephanie hughes out of the bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon ileostomy colostomy urostomyFirst of all, I want to say that I have never had any actual issues flying with my bag. I have heard people worry before about what happens because of the change in pressure inside the cabin, but I have never even noticed a change. I do always empty my bag before getting on the plane, but that’s mostly because I don’t want to have to worry about emptying the bag in the plane lavatory. The pressure change seems to have no effect on my ostomy.

But let’s go back to the beginning of the trip. After making it through check in, the real fun begins: security check. This probably goes without saying, but even if you are checking a bag, always, always, always pack your ostomy supplies in your carry on. I have had the unfortunate experience before of having my luggage not arrive with me, so you definitely want to make sure that your supplies are close to you at all times.

My first time flying, I was a little nervous about everything I needed to bring with me. I even called TSA to ask about my scissors to cut my ostomy bag wafers and was told that surgical scissors (with one rounded edge) are allowed. I always check my supplies to make sure they comply with the 3 oz. rule and I have found that most of the items do. If you happen to have something larger, you can always pack that one item in your checked luggage. I have never been stopped going through security because of my supplies.
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