By Natalie Ornstein
For many people living with Crohn’s disease, life can involve urgent trips to the bathroom as well as pain. For some, Crohn’s can even be deadly. Living with a chronic disease like this can be difficult, isolating and in severe cases, the disease can lead to bowel obstruction, fistulas and ulcers. I’ve unfortunately experienced all three.
I’ve had three surgeries and a temporary ostomy… all within in the last 15 months! I kept telling myself I was the lucky one. I was actually okay living the way I was, despite being in pain most of the time. However, I never knew what was going to happen next.
In April of this year I made my husband drive me to the ER. The pain I was experiencing was like nothing I’d ever felt before. Within 30 minutes, I was rushed in for a CT scan with suspicion of a blockage. Sure enough, I had a massive intestinal blockage which was caused by scar tissue (from years of having this terrible disease). After spending the weekend at the hospital, I set up an appointment with my gastroenterologist ASAP. We decided together that ostomy surgery was probably the quickest way for me to get my life back together, but I didn’t know really what was in store for me.
The day I met with the surgeon was probably the worst day of my life.
You would have thought she told me I was dying, but all she told me was that I would need to have a stoma. For anyone who doesn’t know what that is, well it means an artificial opening made on the surface of the body, which in my case would be my belly… and the "bag." It’s the three-letter word that nobody really wants to hear. She would need to remove about 30 cm of my small intestines, and would not be able to reconnect the remaining colon right away. Wearing an ostomy bag was going to be my new way of going to the bathroom for the next several months. I thought my life was over.
She told me there was a 5% chance I wouldn’t end up with a stoma. Even though she told me not to hold on to that 5%, I couldn’t help it. I kept telling myself it wasn’t going to happen to me. Things like this don’t happen to people like me. She told me that the reason that I would need a bag was because of all the steroids I had to take for the blockage. Steroids have some nasty side effects. In my case they made me blow up. My face was swollen, which is medically referred to as a moon face, so she was concerned that my intestines would also be swollen and she wouldn’t be able to connect – because when the swelling went down I would be a major risks for leaks which could be fatal.
In fact, the reason I ended up with the bag was because my sigmoid colon was on the verge of exploding – almost as if there was a string tied around one end and the other was ballooning… YIKES! How could this all be happening while I was going about living my life as if everything was normal and fine.
How was I, a 36-year-old mom of three young kids with a healthy relationship and a career supposed to live with an ostomy?
I spent the whole weekend crying in bed. My husband however, spent the whole weekend researching. He has always been very understanding and supportive when it came to dealing with the disease and he suggested I go to therapy - so I went to talk to a therapist. She was really able to put a positive spin on the situation. She told me everybody goes to the bathroom. What’s the difference if you go in the toilet or in a bag? She got a smile out of me because I realized how much cleaner it would be to go in a bag versus a dirty public restroom.
Once I came out of my pity party I decided to do some research of my own. I looked up pictures, success stories, blogs, joined support groups, watched YouTube videos, Googled possible complications, and much more.
The morning of the surgery I cried all the way into the OR. Before they put me to sleep I begged the surgical team not to kill me; to get me back to my family where I belong. Waking up in recovery was scary because all I felt was pain. I had no idea what had happened, but I was so happy to be alive that nothing else mattered. It wasn’t until the following morning that I asked my husband to come over and look at my belly with me. Luckily for me, the surgeon was able to perform the entire surgery laparoscopically, which meant very small incisions rather than my whole abdomen sliced over from chest bone to groin.
Living with an ostomy definitely has its ups and downs.
After 16 years with Crohn’s, I had the best 3 months of my life with the ostomy; no pain, no running to bathroom, no worrying that I wouldn’t make it to the bathroom, eating whatever I wanted (with some limitations) and learning what it was like to live without pain.
The morning of my ileostomy take-down (the reversal surgery), I took a black thick sharpie and wrote a goodbye message to my stoma - SMELL YA LATER!!! The surgeon later told me how everyone in the OR high fived because the take-down went perfectly and the entire medical team was so happy for me.
Today, I am healthy and Crohn’s-free. I don’t know what tomorrow will bring because living with an autoimmune disease, you never know if it will come back. But today I start my life. I’ve earned the chance to enjoy every minute and live pain free.
For everyone or anyone living with a chronic illness, you are not alone. Support groups are incredibly helpful – both in being able to share your story and hear about others who are in similar situations. I have a large support team, and more than half of them I’ve never met in person, they’re online. It’s because of all of them that I survived, and why I got up every day and continued to fight the battle.
Natalie had a temporary ileostomy in June, 2016 and reversal surgery in September, 2016 due to Crohn’s disease. She is a busy mom of 3, married to her best friend and works part-time as a dental hygienist in Montreal, Quebec.
A version of this post originally appeared October 26, 2016 on Wise Women Canada.