HOW I DID IT is an ongoing series where readers share firsthand experiences living with an ostomy.
Changing my ostomy system made me really anxious right after having ileostomy surgery. I’ve been adamant about doing it myself because I feel it’s an important skill to maintain my independence. I realized that changing the bag on my own served as a way for me to take ownership of my new situation.
I had a total colectomy in September of 2013 and the first month after surgery a home-health nurse came over to my house a few times to assist me. She was mostly there for moral support while I was doing the dirty work. She encouraged and helped me stay calm when things got messy. Over time, I gained confidence in my bag changing ability. I’ve developed a system which works for me; replacing the entire appliance (wafer/pouch) every 5-7 days. As I became more familiar with my ostomy appliance, it became pretty obvious to me when the wafer seal was becoming less secure, which allowed me to estimate the days until my next change.
Figuring out a relatively consistent timeframe that my appliance stays securely on my body has taken away some of the stress and anxiety from changing it. I can now plan ahead that I’ll change it on day 5, especially if I have a busy schedule on days 6 or 7. I also know that I can probably push it to day 6 if needed. After hearing a lot of people’s stories about having to change more frequently than I do, whether due to leaks or just a shorter wear-time, I’m incredibly grateful to have a good relationship with my ostomy — and I work diligently to maintain it!
With a change routine in place and some confidence built up, I was ready to go on vacation. In 2014, I traveled to three different states and changed my ostomy bag in at least seven different locations. To start with, I went to places I had visited before, where I was comfortable and surrounded myself with people who knew I had an ostomy. While most of the time I kept my bag changing days to myself, the comfort of being able to tell people I needed some one-on-one time with Coltrane (my stoma) made me feel a lot more relaxed about the situation.
Another time, I took a vacation with some people who didn’t know about my ostomy. It was getting close to change day and I got that gut feeling that I really shouldn’t push it until the next day. My friends had scheduled a pretty packed day, including an afternoon event at a winery. I expressed concern to my boyfriend, knowing that I’d be uneasy the rest of the day if I didn’t change before the drinking wine. He was on board with helping me find a window of time to get back to the hotel, but on the way home from the morning activity our friends suggested an impromptu stop. Oh no! I got really anxious thinking I was going to miss my window. I tried to hide my discomfort and my boyfriend and I kept the extra stop brief. We got back to the hotel with an hour to spare before the wine event, and Coltrane was obedient during the change. Whew!
While it worked out on that vacation, it made me extra aware of the balance of caring for your ostomy when surrounded by people who don’t know about it. I’m planning future vacations further away from home, and this time I’ll be scheduling time to change my appliance. I feel that will be key to feeling confident away from the hotel.