Two years with this new ostomy

July 27th was two years with this ileostomy. I didn’t feel the need to write an anniversary post about it. I definitely acknowledged the day but it was more in my head than anything else. When I had my first ileostomy as a teenager, I named it “BB” which stood for belly butt. My dad chose the name before I made the decision to have my jpouch removed. My mom had seen on www.pouch.org that many people were giving names to theirs in order to make it seem like a friend in a way and I thought it was a great idea.

So for the three and a half years that I had an ileostomy as a teenager, I never referred to my ostomy as anything else but “BB.”

When I finally was able to get rid of “BB,” I couldn’t have been happier. I wanted it out of my life so badly because I looked at that wretched thing on my stomach as this awful contraption that was plaguing my body. It had no business being there, in my opinion, and was something that I spent every waking moment fighting. Undergoing kock pouch surgery symbolized the death of my first ileostomy, and with that I buried its name and everything I clung to when I made the decision to have my Jpouch removed and live with a permanent ileostomy at the age of 16.

There have been numerous occasions where my parents asked me if I decided on a name for this new ostomy. I had thought of a few names last year around this time and although I found one that did mean something to me, it never stuck. I couldn’t humanize it in the same way as I did the last time. I want to consider it friend and honestly do more now than ever but I feel like naming it and celebrating these dates in a huge way (by that I meant if I wrote a post or did anything but tweet once about the anniversary date), that I would in some way be doing exactly what I did the last time. And since it worked out so poorly for me, I think I subconsciously felt like I needed to look at this second ostomy with an entirely different mindset.

More like a “just go about my business, it is what it is, don’t acknowledge it too much, make a big deal about it or draw too much attention to it because you never know what can happen” mentality.

But I honestly felt a little bad not acknowledging the date with a post because the truth is that this ileostomy has given me my life back. There have been bumps for sure and it is far from ideal but given my situation which I have somewhat come to terms with, this is the best I can hope for.

And I am slowly becoming okay with it which has a tremendous amount to do with the wonderful people I now have in my life who help me to see that the way I go to the bathroom makes absolutely no difference and doesn’t change the person I am whatsoever. And I also attribute it to time. I have seen what I went through to avoid having an ostomy. My colon wasn’t staying with me long following my ulcerative colitis diagnosis. It wasn’t in the cards for me to have a Jpouch given all the issues I had with it. I tried everything possible to make the kock pouch successful but there was only so much my body and mind could go through with that as well.

There comes a point where you just want to stop fighting … the inevitable.

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I see now that I was meant to live my life as an ostomate and while I may not be ready to give it a name (and quite possibly never will), that doesn’t matter. I can acknowledge the anniversary date on that exact date, a week later, a month later or never again. It makes no difference.

I just wanted to share this with you because I know there are many people who are struggling accepting having an ostomy. There are also many people who may be faced with this decision down the line and who are understandably worried about it. With diseases like Crohns disease and ulcerative colitis, you just never know and I wanted to bring this up today because having an ostomy is scary and comes with a lot of anxieties, fears, and questions. But it is absolutely far from the end of the world. And coming from me, someone who spent years and years despising it and underwent multiple surgeries in an effort to rid myself of this thing on my stomach… it has given me my life back.

I didn’t wake up and embrace the bag and I don’t love having it by any means. But it deserves to be acknowledged because it has provided me with the kind of stability that I haven’t had for a long time.

  • Sherri

    I love this post…and whatever you want to call the amazing thing that, just like you said, has given you your life back! May not be perfect, but you have stabilitly and are living…yeah “it”…and yeah YOU!…<3..gf

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

      yeah all of us. and “it” <3

  • Jodi

    Wow-
    unbelievable how far you have come. I can’t believe this is the same Marisa. You are amazing. Whatever you call “it”, I am so glad it is in your life and YOU are glad it is in your life, and that you both are living a new, better, great life, together.
    so,so proud of you and happy for you.

  • Kate

    Yay for you. It’s a milestone, not because it’s your ostomy’s ‘birthday’ or anything cheesy like that, but because it’s the anniversary of you taking a huge step toward reclaiming your life. I just passed 10 years with mine! Saying that just makes me feel old more than anything. Mine had a name but I haven’t used it in years and years. And all those dates of my surgeries that were once etched in my mind… I can no longer remember any of them except the first one. I know it was 10 years in July but I can’t remember the date. It’s a good feeling :) I know that some people deal with their ostomy by naming their ostomy and celebrating it because it saved their life, yadda yadda…I even know some who’ve gotten tattoos related to beating their illness or getting their ostomy. There isn’t anything wrong with that but it’s never been my style. You don’t have to name it or celebrate it if you don’t want to, I never have. I am grateful to have spent the past 10 years mostly healthy and I’m glad I made the choice to get the ostomy, but I don’t feel thankful to the ostomy itself, you know? Just like I don’t feel thankful for getting my disease for making me a better person or something. It’s there, it’s a part of my life and my story and I want to advocate for people suffering from IBD and living with an ostomy, but my stoma doesn’t need to be humanized with its own name, personality and anniversary because that’s just not how I choose to deal with it. I totally get not wanting to do things the same way you did last time. But you should celebrate you, your life post-illness, and the progress you’ve made in the past years and the people you’ve touched with your blog and your advocacy :)

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

      I couldn’t agree more with everything you said Kate. You have come so far too I hope you know.. and I do remember your stomas name! Weird how things change but we are on the same page with everything. I miss you! <3

  • http://lkpaylor.wordpress.com lkpaylor

    Hi Marisa,
    My name is Lynia and I love reading your blog! For the last few weeks I have been doing IBD research and your blog has been a great resource. I work for a private online company that’s creating a IBD program and we are hoping to talk to people living with IBD so we can better understand what a living with IBD is like and how you manage the condition everyday. Would you have some free time in the next couple weeks to talk with us and tell us more about living with IBD? Please let me know and we will get in touch.
    Looking forward to your reply!
    Thanks,
    Lynia

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

      Hi Lynia, thank you so much for the kind words! I would love to talk at some point in the next couple of weeks. My email is marisa.ibd@gmail.com if you would like to communicate there and can let me know a little more about you and your company:) Thanks again for reading and the sweet things you said about my blog. I really appreciate it! xoxo Marisa