My Ostomy Just Turned 3: What Makes This One Different?

I didn’t want my ostomy’s third birthday to go by without at least a short blog post. I did tweet about this date as you can see here:

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But for those of you who don’t follow me on twitter ( @JournalingIBD ) and even for those of you who do, I still wanted to write a little something about July 27, 2011.

I started thinking about what made this ostomy different from the first one. There are a lot of things including my age, the experiences I have had between then and now, as well as my over all outlook on life and my disease. Those things, along with a few others, are the reasons why I have changed the way I look at this ostomy.

However, the reality is… no matter how old I was, I never would have been able to accept the first ostomy I had. It was constantly leaking (the bag fell off on my first day of college!), I was having blockages far too often, and I just had no idea how to manage trying to be a normal teenager (or social human being) and an ostomate with restrictions I hadn’t yet learned about.

Anyway, without dragging this out which I know I have a tendency to do… I want people to know that I think having an ostomy is great if all the conditions are aligned.

When my Pyoderma Gangrenosum was flaring, the bag wouldn’t stay on for an hour. It was painful and utterly disastrous for me. It forced me to stay in my house and be completely down in the dumps that I didn’t fight harder for a kock pouch if this was how I was going to live.

Point being, an ostomy is a great solution to so many surgical problems IF you don’t have any skin issues, IF you have a pretty good understanding of how food affects your body and the output, IF you are able to have fairly predictable wear and change time. I could go on for a little longer but I think you get the gist.

Having an ostomy can take time to adjust to for so many reasons. Just like your body isn’t meant to have a Jpouch, kock pouch, have no colon, have portions of your small bowel taken out, etc it isn’t meant to have a piece of your intestine become external. The skin on your stomach isn’t meant to have tape on it every moment for years and years. It is just not a “normal,” natural thing for the majority of human beings.

It is necessary sometimes and it has given me my life back. I do still struggle but this helped a tremendous amount both physically and mentally. Just know that I, along with countless others, understand that those who praise the ostomy God are probably people who have all of those things in check. I have heard people say they have had an ostomy for 40 years and it is the greatest thing on the planet, yada yada. I know how frustrating it can be to hear people talking like that when you have questions and when you are having difficulty managing yours.

You aren’t alone. This is a life altering, body altering, and mind altering surgery. Give yourself time, ask questions if you need to, but know that it really can be a good thing.

Took a couple belly shots two weeks ago in the locker room... learning not to care...

Taking a couple belly shots in the locker room… learning not to care…

 

Sorry this wasn’t as short as I had hoped ; )

 

 

  • Sherri

    You never cease to amaze me my GF…<3!

    • http://risaroo86.wordpress.com Marisa Lauren

      <3

  • Matthew Dobos

    Hey Marissa, So sorry you so much skin trouble! Do you still have skin issues now? My first ostomy I had issues with my skin as well, but nothing as severe as yours. It’s really too bad that new ostomates still have to figure out what bags work best by trial and error. Took me a few years to really find the best – I now I get 7 days of wear time with a one-piece and never have any skin issues. Some product rep at Convatec introduced me to bags with the convex wafer/flange – I hand’t realized my stoma was :”short” and that made a huge difference. I think we’ve all experienced these wardrobe malfunctions with bags early on, but it shouldn’t have to be that way. Thanks for your story- it helps.

    • http://risaroo86.wordpress.com Marisa Lauren

      Thanks so much for commenting Matthew. Thankfully now, (knock on wood, cross your fingers, etc), my skin is okay. I had a “short” stoma my first time around and it did make a big difference. One of those things you would never think mattered until someone brings it up.