Most Recent Thoughts About Having an Ostomy

Tomorrow is World Ostomy Awareness Day and I didn’t just want to write a post that simply educates people about ostomies because it is a lot more than that. I also feel like that can be left for other days and times, and doesn’t necessarily need to be done during the designated awareness day.

I want to talk about where my head is at in terms of having an ostomy right now. At 16 years old when I had my first ileostomy all the way until I was 19, there was nothing worse in my mind than having a bag. There was absolutely no way I could ever accept it, live with it, or be comfortable with it. At the age of 24, I went into my second ostomy surgery with a completely different mentality. I knew this was it. I knew I had absolutely no other options. I fought for three years as a teenager to get rid of the bag, and I fought for the following five or six to keep the kock pouch (continent ileostomy) so that the way I went to the bathroom would only be visible to me.

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At the very end of July 2011, I was ready to give in to having a permanent ileostomy. I was ready to accept it, stop fighting it, and just do whatever I had to do to live my life as an ostomate. I already had to sacrifice so much in terms of eating, activity and just life in general but if it meant staying away from the hospital and especially the operating room, it was a price I was willing to pay.

In November of 2011, I was diagnosed with pyoderma gangrenosum which changed everything for me. It caused the bag to leak literally nonstop – to the point where I was going through 5-6 appliances a day. Just as a reference, usually a person will change their appliance anywhere from 3-7 times a week depending on the patient and situation. This new auto immune disease caused a great deal of pain. After my doctor told me I had PG, and that the medications necessary to deal with it would be cyclosplorine, prednisone, humira, and remicade, I actually thought I was dreaming and started cracking up. For the first time ever I knew what my mom meant when she would quote the line from the Joni Mitchell song “laughing and crying is the same release.”

Twelve years, fourteen major operations, a Jpouch, two ostomies, five kock pouches, a trillion harsh medications, more tests and procedures than I even remember and here I was, right back at the beginning… with an ostomy, facing another unpredictable auto-immune disease that is treated with the same medications as ulcerative colitis and Crohns disease.

Needless to say, I was a wreck.

Fast forward a little bit and after months and months of steroid injections, the PG went away and although it is chronic, it has been under control (knock on wood.)

If I was just dealing with my ostomy, I would happily stand up and tell the world that it saved my life. I would be excited in a way for World Ostomy Day, look forward to ostomy conventions, and talk more about life as an ostomate. I would love more than anything to be the poster child for those with ulcerative colitis and share all about how if you remove your colon and have a bag, you are getting rid of your diseased organ and you can go on to live a wonderfully happy life.

After all, a patient with ulcerative colitis who no longer has their large intestine is “cured” – right?

Wrong.

I am scared. I am scared every single day that the pyoderma gangrenosum will return and cause the bag to not be able to stay on my skin. When this happened, I was stuck in my house for MONTHS! Luckily, I was still in the recovery mode so I wasn’t missing out on things. Or, I should say, I didn’t have to stop something that I already began.

But, now… I am engrossed in things that I love and am passionate about. I am going out a lot more and hopefully will start working soon. I want to have a life that I am confident won’t be interrupted by illness. I want to trust my body. I want to trust that I can put this bag on and it will stay for X number of days.

I have no control over the PG. There is nothing I can do or not do that will make sure it stays in remission. It is completely unpredictable, much like ulcerative colitis and Crohns disease.

So while I would love more than anything to talk tomorrow about how much healthier and better my life is now that I have an ileostomy, I am afraid to come out and say that. There are other things to my life that won’t allow me to. I don’t think people realize what so many of us deal with on a day to day basis. I don’t believe the people who claim ulcerative colitis patients can be cured by simply removing your large intestine have any fricken clue what they are talking about.

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When I wrote my “About Me,” on another site… someone asked me how I could still be an IBD patient since I had my entire large intestine removed. It was a fair question. But it was a question that truly and utterly pissed me off beyond belief. Inflammatory Bowel Disease is not just about going to the bathroom. It is not just about being on medications so if you aren’t currently on any of them, you are “fine.”

Crohns disease AND ulcerative colitis are auto immune diseases that affect your entire body; not to mention your mind. Undergoing ostomy surgery two years ago has helped me to achieve health I never would have been able to attain otherwise. There is no doubt about that. But, an IBD patient always will be an IBD patient. We all deal with so much behind the scenes.

Maybe next year, I will feel like standing up and saying how my ostomy saved my life. But today, I think it is misleading on a lot of levels.

  • http://@LesterIBD Lester

    Amazing Blog. You have been through a lot.
    You are right, people don’t understand that after surgery, you still have got to deal with IBD everyday. I have Crohns which effects me small intestine (what is still left in there).After they removed two metres of it, everyone though I would be sorted for years. I never did fully recover and eighteen months.on, it’s back and all the nightmares begin again. First problem, getting referred, then tests, procedures and drugs. Not any drugs, drugs that you have to spend a day in hospital to receive, that make you ill and can cause a multitude of other problems. Then it’s only a matter of time before they finally will say that you need more surgery.
    WHERE DOES IT END?

  • Sherri

    You continue to amaze me…the way you are now and all that you have been through…I have supressed things as you know…so when I read about the past my awe of you and your strength..no words. I love you so much my GF…one day at a time….and as Dad would say….may it never be worse than today…<3

  • http://stolencolon.com Stephanie Hughes

    Wonderfully written, Marissa! This is so honest about how having an ostomy affects you mentally and not only physically. I’m glad that you’ve started writing more about it because I think you have such a powerful voice on this subject. Much love!

  • Jodi

    Honesty. you have been blatantly honest about what you have gone through. your honesty and strength are amazing. you have been through so much and continue to amaze. Stay strong brave girl.

  • Matthew Dobos

    I didn’t realize we had so much in common Marissa! Hopefully you can have a long period of good health as well. Keep up the great work!

  • http://ibdandbeyond.wordpress.com lucychapmanprints

    Having also had my colon ‘simply’ removed, I would agree completely that this isn’t a cure – it’s the start of a whole new story, one that continues to affect and shape your life – perhaps even more than colitis did for me. Things aren’t as simple as people like to believe. Love Lx

  • Pingback: Happy World Ostomy Day! | Keeping Things Inside is Bad for My Health()

  • http://janders21.wordpress.com janders21

    Very insightful entry. I very recently (8 days ago) had surgery to get my colon removed due to UC, and I do not miss the pain UC caused me for 10 months. But you’ve been through so much more. I’ve come to realize that UC has made me a much stronger person and has made me appreciate life so much more. It’s made me want to experience so many new things in life. It seems to have had that same effect on you, even though it may have taken a while. Good for you!

    I love the end of your blog regarding the “always an IBD patient” bit. You are spot on about everything we deal with behind the scenes. Even though I am “cured” for the time being (crossing my fingers), I will still look to offer support to others to have IBD and to the CCFA as much as possible. It can be a debilitating disease to live with, something I wouldn’t wish upon anyone, but we can still help people realize how much positive there still is in their world.

    Hope all is well. Keep writing.

    Jason