Ostomy surgery is something every IBD patient hopes to avoid. It’s normally one of the last options doctors will suggest and one of the last a patient wants to accept.
Yes, there is a stigma that surrounds a patient with an ostomy. Yes, it’s not a perfect system. But I will say that for many ostomy patients that I know, it’s drastically changed their life and allowed them to get back to activities, friends, and more that they love.
Since there are so many mental and physical obstacles when deciding to get an ostomy, many patients put it off as long as possible. They let their health decline, push through incredibly hard times, and the prospect can weigh on them and on their loving support network, as well. I know how hard it is to make a decision, so I wanted to share my story on how I waited so long to get an ostomy, and how I now regret waiting as long as I did.
To this day I can still remember the first time an ostomy was mentioned to me. I drove down from the University of Rhode Island during the first semester of my sophomore year to have yet another rectal surgery for my growing fistula system and infection. This was a constant occurrence for me and one that was quickly getting old when I was supposed to be enjoying college.
My doctor came over to me while I was waiting to be brought into the OR and shared his thoughts on the upcoming surgery. He mentioned an ostomy as a potential decision down the road and, sadly, my father immediately said no. At the time we were all ignorant about what an ostomy was or what life would be like with one. What we did “know” (and what we knew was wrong) was that an ostomy is for older and sick patients, not something for a 19 year old.
I battled the option, because it was something I was told that I shouldn’t want. Eventually I was able to have the proper portion of the colon (large intestine) removed and got back to a somewhat normal life. Things were going well for a while and I was able to put the ostomy discussion off, which made me happy. Then, at 25, my Crohn’s game back with vengeance and went after the rest of my colon and rectal area. It was miserable, I knew what was going to be discussed again as an option in the future.
From ages 25 to 27 I fought to live a normal life, but there is nothing normal about going to the bathroom 20-plus times a day, hardly being able to leave the house, not seeing friends, and not even being able to think about holding a job. This was two years of pain, fatigue, constant diarrhea, and of course accidents all the time.
Is that the way I was supposed to be living in my mid 20s? I don’t think so.
At 27 I decided to have a resection and have another portion of my colon removed. I was told that I’d still have enough to live a normal life, but with about five or more bowel movements a day. My first thought was, five a day? That sounded a lot easier than 20-plus painful bowel movements a day. "Let’s go doc, take it out." So I went in for my third resection and with my fingers crossed that life would get back to a “new normal."
Sadly, this was not the case. After the surgery, I just didn’t have enough healthy colon left. My Crohn’s came back and immediately attacked what I had left. We tried all the medications that were available, even Eastern medicine, everything. Nothing helped. I was back to going to the bathroom constantly, except this time it was closer to 30 times a day and I was having regular accidents — as a grown man.
This is when I had to face the decision. It wasn’t an easy one. I was a 28-year-old single man, and I was going to be living with a “bag”? How am I going to live? How will I do my activities like skiing or climbing? What will my friends think? Will I be able to meet a girl? Tons of questions went through my head, and now they had to be answered.
As I mentioned earlier, the ostomy system is not perfect and living with an ostomy isn’t always the easiest thing in the world. What I will say is that it’s a lot better than going to the bathroom dozens of times of day, living in constant pain, fear, and more. My ostomy, which I put off for such a long time, when my Crohn’s was at its most severe, is not something I love about my life. But life has only improved since I got it.
I now complete triathlons, have an amazing partner in life, climb and ski when I want to, see my friends on my schedule and not my disease’s schedule, and I am able to live the life I wanted. I don’t have many regrets. Putting off my ostomy for so long, and now seeing that living with an ostomy is so much better? I wish that I got my ostomy sooner. And since I became an IBD and ostomy advocate, I can’t count how many ostomy patients I've met who will tell you the exact same thing.