August 27, 2015

Falling Into Place – Restarting My Life with an Ostomy

It was an exciting day as I stepped out of my car door, onto a new college campus.  It was an environment filled with more new people than I could count, and of course a jumble of emotions one cannot control.   Oh yeah, and not to mention the ostomy I was sporting along with a suitcase full of supplies and all the medications I would need for the semester.  Entering college was hard, and with a chronic illness I expected it to prove even more challenging.  Surprisingly, I was wrong.

You may be asking, “what is an ostomy?” An ostomy is an artificial opening on the stomach, created during an operation such as a colostomy or ileostomy.  It is a “new” channel for waste to exit the body during the digestive process.  It can be temporary or permanent.

My Story

I thought life could not throw me any more surprises after nearly ten years of being diagnosed with Inflammatory Bowel Disease (IBD), and of course I was wrong!  I “restarted” my life two years ago when I came out of surgery with my ostomy.  Although it has been the hardest battle, I feel I have truly won.  I have my life back, and there is nothing more that I could ask for.  I have learned that every day is a new day and what you make of it is up to you.

Attending college and moving away from home was one of the accomplishments I was able to achieve with starting this “new life.”  It was the best feeling until I got there and thought “what are people going to think of me? How do I explain my disease or do I even have to? Do people even know what an ostomy is? What if….?” The list goes on and on, and although I tried to tell myself to move forward confidently, it was only human to have these questions.

The only way I found answers was through my experiences.  I found that people are going to think of you the way you think of yourself, so be confident and kind.  Explaining my Crohn’s went one of three ways; either people were really interested and asked questions, some already knew what it was, and others were extremely confused and just said “oh okay, well feel better.” Explaining Crohn’s was easy to me.  On the other hand, I was very nervous about explaining my ostomy. To me the circumstances of explaining my ostomy were much harder for a number of reasons.  Chronic diseases can also be known as invisible illnesses, and up until I had an ostomy everything about my illness was just that, invisible.  Although it was and is extremely frustrating to explain how sick you are when you “look fine,” it is also sometimes easier to not explain at all. I was always secretly happy that no one could “see” my disease.

My new ostomy took away that invisible feeling. The clothing I wear is just like everyone else, and more times than not, if not at all, no one can tell I have an ostomy.  The toughest situations I have had were going to the beach and going out on dates. I was so worried about what I would wear, especially when it was time to hit the beach.  It took a while but I found my niche, and that would be anything high-waisted!  These clothes allow me to be comfortable and cute at the same time.  Everyone is different, I know people who go to the beach and do not cover up their ostomy, which takes a lot of guts. No pun intended.

Dates can also be hard because sometimes your date may want to cuddle up with you and watch a movie, or something like that. It is hard for individuals with an ostomy as it can take a while to open up and share your life about living with an ostomy.


Life Moving Forward

I am in the process of finally learning how to let go and live my life.  I have learned you do need to tell anyone about your ostomy or your scars until you are ready.  If they cannot accept you, they are not worth another second of your time.  Either people are supportive but know that your ostomy does not define you, or they are too caught up in their own lives and do not even know you have one!  Most people do not care.  What a relief!

Although many others do not mind, it does not make it easier to live life with an ostomy.  Personally here are a few tips I find to be helpful while living with an ostomy:

  • Do not label yourself as someone who has an ostomy. You are still the person you are, and the person you want to become.  Just like before, you can accomplish anything.
  • An ostomy does not limit you by any means. I have been hiking, tubing, and spent all winter snowboarding down some of the biggest mountains in New England. Guess what, during these trips I did not have to worry about the bathroom as much so I had more fun!
  • Your self esteem will change because your life is changing, but you have to get back out there because once you do you will never turn back.
  • Although at times it may seem like everything is crashing down, tomorrow will be better.  Life does get better.

Living with a chronic illness day to day is not easy, but living through experiences over time can help.  Free yourself of all the things you think you are “supposed” to be.  All that matters is that you are happy, and if you are, then you are doing something right.  College and my experiences has taught me to feel comfortable in my own skin.  Once you are, everything else will fall into place.