Lori’s Story

Today’s post is actually The Stolen Colon’s very first guest post. This post is written by my good friend Lori. She and I first connected about a year ago online, realizing that we have shared many of the same battles throughout our lives, and soon figured out that we live just a few hours away from each other. We have kept in touch ever since and I had the amazing privilege of finally getting to meet her in person just a few months ago. And I have found that she’s even more amazing that I originally thought. I hope you enjoy getting to meet her, as well. I’ll let her take it from here.
In 2002 at the age of 24, and 9 months after getting married, I was diagnosed with Crohn’s disease.  Like most people, I had no clue what this disease could do or what it meant. After 5 years of living with Crohn’s – I knew I was ready to be a mother!  At the time, I was taking Remicade and Imuran.  Stopping the medication during my pregnancy was not an option. The disease was too severe.  In spite of this, I was able to give birth to a very healthy 9-lb baby boy.
Years on steroids and being on several medications had their side effects.  I was in constant pain and swelling, and I was losing my hair.  I had become very frail.  I sustained a couple of painful injuries, including the time when I fell and broke both of my elbows.  The continuing complications and the added stress to my quality of life, on top of still experiencing very active Crohn’s, helped me to decide that it was time for a change.
In 2012, I underwent a total proctocolectomy.  A week prior to my surgery, I shared the news of my scheduled surgery with my five-year old son.  I explained that I would be in the hospital for about a week.  He came over to me and reassuringly placed his hands on my very swollen cheeks (from all the Prednisone) and said, “Mommy, the important thing is that you feel better!”
After a 9–hour surgery, and a permanent ileostomy, I was finally able to gain control back in my life.   My hair grew back, the swelling from all the steroids subsided, and almost immediately I could tell a huge difference in my pain level.   I had hidden my illness for so long, that I forgot what it was like not to make twenty trips to the bathroom in a day or be in so much pain that my husband would have to pick me up off the floor.
My son, who is now six, calls my ostomy bag “my patch” (yes, he might be a little obsessed with pirates!),and loves that we can once again do all the things we love as a family without me being too sick.  I was so worried that having an ostomy would negatively impact my life, that I wouldn’t be able to cope with the stigma around it, and that I would never be able to resume all the activities that I loved and missed so much.  Little did I know, I wouldn’t have to give up anything.  It restored the once lost “quality of life” to me.  We can swim, spend hours on the beach, and I never have to worry about my bag or being close to the bathroom.  I haven’t even had to change my wardrobe and my bag stays perfectly hidden even under a swimsuit!
One of my greatest fears, losing my colon to this horrible disease and the unknown impacts it would bring to my life, became my reality.  My ostomy has not only changed my life and my health, it’s also brought some amazing people into my life.  I’ve learned how to love and give back in a whole different way.  It’s taught me not to use my disease in a way that hinders my life, but to share it to teach others.  My hope is that this experience teaches my son that being different is OK, and that you can lead a beautiful life regardless of the obstacles.

#OstoMYstory