What the Word Ostomy Means to Me


Posted by Brian Greenberg.

WOD Logo2012

As today is World Ostomy Day I’m reflecting back on not just the almost 3 years that I’ve lived with an ostomy now, but the years leading up to my ostomy as well.  The word “ostomy” is one that many in different chronic illness communities fear.  For some people and I was one of them, people tend to purposefully stay ignorant to what an ostomy is and everything about it because they don’t want to come to the realization that it might have to become a reality.

First I have to go into a little bit of my history leading up to my ostomy.  But if I had to pick one word to describe what my ostomy means to me, it would be FREEDOM.  Freedom from the need to be near a bathroom all the time, freedom to do what I would like to again with my friends and freedom to live life again to the fullest without letting Crohn’s disease take over my life.

The Years Leading Up To My Ostomy

The years leading up to my ostomy surgery in November 2010 were hard and that is probably an understatement.  For more than two full years I was terribly sick.  Everyday was a battle with an enormous amount of pain, nausea and as many as 30 trips to the bathroom.  I was a 26-year-old that had accidents many times a week and I mean MANY!  It wasn’t a good way to live, my Crohn’s was taking over my life and it is easy to say that I had no quality of life.  Still I stayed  ignorant on purpose to what an ostomy was and what life would be like with one.  All I knew was that it was a “bag” as people say.

Finally in 2009 I decided that something had to be done and I needed to take a chance to make my health better.  So I decided to have my second resection on November 2009.  They were going to take out all of my transverse colon and a small amount of my descending colon (I already had my ascending colon removed 5 years prior).  My doctors told me that my quality of life would likely improve and that I would still have enough colon to live a normal life, probably just going to the bathroom 4-5 times a day.

This ended up not being the case, since following this surgery my body quickly attacked the remaining colon I had.  I was going to the bathroom constantly still.  Life became looking for a bathroom constantly as I knew I would have to go every hour pretty much.  Add on to this that I already had rectal disease and I had very little control of when a bowel movement would happen.  I remember having to load up on Imodium just to leave the house for a few hours and that still didn’t work all the time.  Just to go out on a date, I would not eat anything all day, take 6 Imodium before I went out and then just hoped that nothing would happen.  It was time for a change, I had to look into an ostomy more.

After doing research I have to be honest in saying that I was scared.  Not only was I not sure how it would affect my life, but I wasn’t sure how my friends would look at me now.  Still it was something that I knew had to be done, so I couldn’t stay ignorant to an ostomy any more.  IT HAD TO HAPPEN since this was no way to live.

The Years Since My Ostomy Surgery

Only one year after my second resection, I decided to have the rest of my colon removed and to get an ostomy.  In November 2010 I would change my life forever.  It was terrifying and I wasn’t exactly sure what was ahead.  Now I can easily say THE OSTOMY HAS CHANGED MY LIFE AND ONLY FOR THE BETTER!  Like many ostomates I wish I had chosen to do the surgery earlier and not waited so long.

The first few weeks were tough.  Learning how to change it properly, learning how to empty it, figuring out how to sleep with it and just adjusting to life with an ostomy.  It wasn’t nearly as hard as I thought it was going to be, but it did take some time, mentally more than physically.

Brian CampingOnly a few months after getting my ostomy I was active again.  Doing things like snowshoeing, climbing, hiking and more.  The ostomy didn’t just allow me to feel better, it allowed me to live again.  Waking up each day didn’t mean a constant battle was ahead.  The fear of leaving the house was gone.  Needing to be near a bathroom all day was no longer needed.

Slowly the mental battle became less and less.  I realized that my friends didn’t care about my ostomy one bit.  After that, I learned that it wouldn’t affect my dating life also.  Everyday it became easier and easier to live with the ostomy.

So What Does The Word Ostomy Mean To Me

It means getting ones life back.  The word ostomy doesn’t need to be feared.  People don’t need to be scared of the thought of living with a bag.  I don’t want to say that life is perfect with an ostomy.  It takes time to adjust to and become comfortable with.  BUT it is so much better than living life with the constant fear of having an accident, living with constant pain, constant nausea and countless other IBD symptoms.

When people mention an ostomy, it shouldn’t be something that anyone judges.  It’s just a different way to go to the bathroom.  We all go, those with an ostomy just go into a bag on their stomach.  It doesn’t mean we are any different.  We are still the same people we were before, just healthier and capable of leaving the house to live life again.  I remember when a girl I was dating and I were talking about my ostomy.  I asked her if it bothered her at times that I had one, her response “Of course not, it allows you to be healthier and more importantly be here with me.”.

So what does the word ostomy mean to me, like I said before FREEDOM!

Never Stay Quiet!

To help others with Crohn’s disease, ulcerative colitis and ostomies, please click the link below and make a contribution to the Intense Intestines Foundation which will allow us to continue our mission.

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