How My Ostomy Changed My Life for the Betterby Brian Greenberg Patient Advocate
Have you ever sat alone in your home and wished that you could once again do the things you once loved to do? For years, that was my life. I wasn’t able to engage in anything that had once made my life so full: the pain was too great, the accidents were too frequent, and Crohn’s disease was in control of my life. Eventually I was put in a position to make a decision on ostomy surgery. And since my quality of life was so low, the decision was basically made for me.
Ostomy. It’s a word that many IBD patients don’t want to hear. I get it. But the reality is that an ostomy is something that many Crohn’s disease and ulcerative colitis patients will have to face at some point. At 28 years old, I had to have ostomy surgery. On a scale of 1-10, I would say my quality of life was a zero — going to to the bathroom 30-plus times a day, having accidents on a regular basis, hardly ever leaving the house.
Still, the decision wasn’t easy. I put it off for a long time, exhausting all of the other options that were open to me. I had surgeries to fill in the fistulas in my rectal area, to have infections drained, to remove yet another large portion of my colon. I tried Eastern and Western medicine. I tried different diets. I tried pretty much everything. Nothing made my life better.
Once all of my options were exhausted, my decision was made for me. There wasn’t another choice. It was time to have ostomy surgery and do what I could to move on with my life; to grab control back from Crohn’s disease and leave the house without fear.
I understand why so many patients fear an ostomy. It’s a complete lifestyle change and there's a stigma that can go along with it. But I’m here to let you know that an ostomy isn’t a bad thing. It isn’t a tragedy. My ostomy gave me my life back.
My life has taken a 1800-degree turn for the better. The ostomy has allowed me to do so much that used to seem impossible.
Here is a short list of fears which I’ve found to be unfounded, and things that I thought I couldn’t do with an ostomy but actually can:
An ostomy will smell. This is far from the truth. An ostomy does not smell. Will an ostomy smell if you have a very bad leak? Yes. But for me and many patients, leaks are not something that you deal with on a regular basis. I can probably count on the fingers of one hand the number of leaks I have each year. And with proper ostomy maintenance, you won’t have to worry about big leaks often at all. So the smell fear? Busted.
People will be able to tell I have an ostomy. Very far from the truth. People don’t know I have an ostomy unless I tell them. I’m able to wear normal clothes and even tight-fitting clothes when needed. Can you tell I have an ostomy when I am wearing my skintight triathlon suit? Nope. Another fear, busted.
I won’t be able to move around well or do sports. This is something that is different for every patient, but if you want to live an active life with an ostomy, you can. Personally I do a lot. I ski, climb, camp, swim, bike, run, golf, and more. I twist and turn my body in all kinds of weird ways and I don’t have a problem with an ostomy. Fear busted.
I won’t be able to take part in water sports. While you have to be aware of the strength of your ostomy and the last time you changed it, water sports shouldn’t be a problem. It will be natural to have some anxiety, but I’ve done many triathlons with my ostomy, swim 2-3 days a week, have gone tubing, cliff jumping, and more. Now, do I like to change my ostomy after a long triathlon? Yes. But do I need to all the time? No. If an ostomy can hold up to that level of swimming, followed by biking, and running, it should be fine a large majority of the time. Another fear, busted.
My friends will judge me or not want me around with an ostomy. There can be a stigma that follows those of us with ostomies, but personally I have never found this to be the case. The people around you will usually handle your ostomy the way you handle it. If you are scared, nervous, or filled with anxiety because of your ostomy, they will be too. They will feel all of those emotions with you. But if you are confident, show them that it’s not a big deal, and that you can do many of the activities you want to with them, they won’t care. Your friends will just be happy to have their friend back.
I won’t be able to find a partner. This was a big reason why I battled for two years and had zero quality of life. I was a single guy in my mid-20s, and I thought no girl my age would ever want to deal with an ostomy. I was afraid that I would never find “the one." That wasn’t the case. Since I got my ostomy, I have had no problem dating, I have had no problem with intimacy, and I am now engaged to be married to the most amazing and supportive fiancée. If you handle your ostomy in a positive way, you won’t have a problem finding a partner who can deal with it in a positive way, too.
After my ostomy, I went from hardly being able to leave the house, to completing multiple short distance triathlons, two Half Ironman races (with a third on the way), and the New York City Marathon. I hang out out with my friends. I met the partner of my dreams.
If you’re putting off the decision to have an ostomy because you're scared, I can tell you from experience that an ostomy is not necessarily a bad thing. Is it a perfect system? No, it’s not. There are times when things will be a little difficult. But it also has the potential to give you your life back; to allow you to do the things you love without fear; to live! And isn’t that what we all want?