Living with Crohn’s disease or ulcerative colitis can be extremely difficult at times. The list of symptoms that an IBD patient might experience on a day-to-day basis is long. Many of the challenges are physical, but others are mental as well. One of the toughest for many people is the prospect of an ostomy. So many thoughts can spiral out of control when a patient hears “ostomy” for the first time. But is an ostomy a bad thing? The answer for many patients is NO.
But having an ostomy isn’t easy, and I will be the first to say it’s not a perfect system. However, there are countless IBD patients who do decide to have ostomy surgery, and their lives improve in many ways.
So what are some of the pros and cons of living with an ostomy? Here we go.
Pro: Urgency is reduced. While you’ll experience a sense of urgency if you allow your bag to fill too much, a very large percentage of your life will feel less fraught—no more running to the bathroom. Once you get used to how your new ostomy works, you’ll feel a new calmness when you think about bathroom issues.
Con: You lose the ability to control when you go. It happens on road trips, during movies, at major life events—anytime, really. The bag fills up at its own speed and then you have to live with it.
Pro: No more accidents. As an adult I will admit that when my Crohn’s got bad, I was going to the bathroom upwards of 30 times a day. When you go that much, you are bound to have accidents. At times, a lot of accidents. Having an ostomy eliminates this problem. No longer are you running to the bathroom and losing control.
Con: There will be leaks. While you won’t have full-on accidents anymore, there will be leaks from time to time. For some patients it does take some work to find the right appliance to limit leaks. But as I mentioned earlier, an ostomy is not a perfect system. You have certain movements that might reduce the strength of the ostomy. You might have oily skin, which makes leaks more likely. In time you will find a system that works for you. In the end, I would take a leak over an accident any day.
Pro: Less pain. If your IBD is problematic enough to warrant an ostomy, there is a good chance you’ve been going to the bathroom a lot. This means pain, not only in your stomach but also on your backside. Going over and over again, then wiping over and over again, can really take its toll on your skin. This pain goes away with an ostomy because there is no more wiping.
Con: There is no schedule. In an ideal world an ostomy would last a set amount of time: You’d change it when you want, and go about your day. But no matter what you do, this will not happen. Sometimes an ostomy will last two to three days; other times, five to seven days. You can’t make a definite plan, but you can easily prepare for the unexpected.
Pro: It becomes an easy part of life. It does take time, but eventually you don’t even notice your ostomy’s there. You go to the bathroom, empty the ostomy quickly, and get back to your day. At times I don’t think about my ostomy, even when I go to the bathroom. It’s has just become natural for me, which is the case for many patients.
Con: Traveling is a little more difficult. By little, I do mean little. There aren’t huge changes but a few things that add up. You will have to pack more, including extra clothes (just in case) and all the ostomy supplies. You’ll also have to leave some extra time when you go to the airport. Personally I always like to go to the bathroom before I get into a long security line because I know I will probably be searched by the TSA—the ostomy always shows up during screenings. These aren’t big deals but they take time.
Pro: You’ll be fast. When you’re living with an ostomy, the bathroom becomes super easy and quick to use—indoors and outdoors. We can go anywhere. At times I even bring a small amount of toilet paper with me on the golf course, on a hike, during a run, etc. This way if I need to go, I can, without ever exposing any skin.
Obviously I can go on and on about the pros and cons of living with an ostomy. In the long term, though, many IBD patients are happy with the decision to get an ostomy. The choice isn’t an easy one and I will always suggest that a patient who is hesitant exhaust all options before getting an ostomy. This way they know they tried everything first.
Once they feel confident with their decision and the timing is right, many patients say the same thing: “Why did I wait so long?” An ostomy is a life-changing surgery and one that comes with a period of adjustment. Once that happens, life can not only get back to normal but to a much healthier place.
Brian Greenberg was diagnosed with Crohn’s disease at age 11. His freshman year of college, he began a roller coaster ride of flares, hospitals stays, major surgeries, and more, with brief breaks of good health. After having an ostomy surgery 6 years ago, making it permanent 3 years ago, he is happy with his quality of life and enjoys helping others with their health journeys. When his health cooperates, he enjoys triathlons, hiking, climbing, skiing, and more.