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A Better Ostomy Experience

The first ostomy was a bad experience. Read about that in “Limitations with an Ostomy.”

Just a few months before my second stoma was formed, I had the mindset that if I needed to have another a stoma, I would frankly rather die. It was this fear and frustration that led to me venting on social media, which ultimately led to me meeting many strong and inspiring individuals, living with inflammatory bowel disease (IBD) and ostomies. These people were the reason I felt I could manage; they had shown me that life wasn’t over just because you had a stoma, and they had given me lots of tips and advice. Before I “met” these people online, I wasn’t even aware that more than one ostomy bag manufacturer existed, and I had no idea how many additional products were available that could have helped with the issues I had faced the first-time round.

Opening up about my ostomy

The list of things I felt this stoma stopped me doing was much smaller. For starters, the fact that I was able to talk about it openly made a massive difference. I didn’t feel it was something I had to keep secret. When I left the house, I left prepared with an emergency bag changing kit, which was something that had never occurred to me before. I also had very few leaks in comparison to my first stoma. I had assumed that all stomas were the same, but my second had been created better, which made it easier for the bag to stay adhered to my skin, even though I had been using the exact same bag I had used the first time. A lot fewer leaks meant better sleep and being able to go out and socialize.

The limitations with this stoma were much less

This time, I was aware that the food I had been told to avoid the first time around, was only ever supposed to be for the first 6 weeks after surgery. After that, I should have been introducing new foods to see what I could tolerate. So this time, I did just that, and there was nothing I couldn’t eat!

I also wasn’t afraid to wear tighter clothes, which mainly just meant I had a plain, tight vest on with whatever, slightly looser garment I wanted over the top. However, the summer still sucked, and I was still afraid to exercise. Tighter clothes did feel like an issue in the Summer months too, as I only felt comfortable in layers because you couldn’t see the bag, but Summer was too hot for layers…

In conclusion, stoma number two stopped me from:

  • Wearing what I wanted in hot weather
  • Enjoying Summer
  • Exercising

I was confident about my third stoma

Thanks to my second stoma being so much better than the first, when it became clear that my j-pouch needed to come out in favor of a permanent stoma, I was confident I could make it work. I read a lot, I asked advice, I ordered information booklets and samples, etc. Don’t get me wrong, for the first few weeks after finding out, I did get upset on multiple occasions, when the realization that the next stoma was FOR LIFE, but it soon disappeared, and was replaced by excitement.

For the majority of the past twelve years, I’d been sick. I’d not been able to do a lot, and it felt like someone had literally just pressed pause on my life, and the stoma was the only way I could get them to press play again.

This ostomy gave me my life back

I think the preparation helped, as it was the first time I’d had a stoma that wasn’t an emergency! Surgery came and went, and just a few short months after it, I returned to life. An actual life. I am just 11 months on now, and I have managed to do so much that I couldn’t possibly do before because of chronic fatigue and pain. I’ve been on holidays, I’ve been swimming, I have been to a spa, and a theme park, and generally just been able to say yes when people have asked me to do things!

I have had zero leaks with my current bag thanks to trying multiple different ones, and big knickers and high waisted jeans have meant my wardrobe hasn’t had to change at all. I have gained weight for the first time in twelve years, and can honestly say, I look and feel healthier.

In conclusion, stoma number three stopped me… Doing NOTHING! I got my life back.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Davethegardner
    2 months ago

    Good to hear your story. Had my first ostomy for Crohn’s 42 years ago and it has been revised 4 times since (from a colostomy to an ileostomy). Ive had my share of outrageous appliance failures, but a tip from the engineers at the company I’ve been using for many years now has almost eliminated breakage: change by the calendar, not by how it feels, unless it starts to itch before the “due date.” So I now change everything about every 3 to 4 days rather than the 5-7 days once did. And, don’t let it get so full that the pouch is straining. I’ve been using a moldable skin barrier which protects my skin much better than the ones I had to cut. So I garden, compete in swimming and occasionally in race-walking, sing in a performing chorus, etc. I do schedule my eating so as to not get caught with a full appliance when I can’t get to a bathroom (like, I don’t eat before chorus performance when I’m on stage for two hours or more). So, yes, vigorous life is possible with a stoma–just have to be willing to make adaptations.

  • Sahara Fleetwood-Beresford author
    3 weeks ago

    Really glad to hear your thriving with your stoma!
    – Sahara (team member)

  • thedancingcrohnie moderator
    2 months ago

    I am so happy to hear that you are doing so well after your third procedure. I wish you continued great health!

    Always dancing,
    Elizabeth (team member)

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