From the start, changing my bag made me really anxious. I’ve been adamant about doing it myself, as I feel that it is an important skill to have to maintain my independence. I realize now that the act of changing my bag on my own served as a way for me to take ownership of my new situation. Though a home-health nurse came over a couple times during my first month after surgery, she was mostly there for moral support while I was doing the “dirty work”. She encouraged me and helped me stay calm when things got a little messy. Over time, I gained confidence in my bag changing ability and have developed a system that works for me.
I typically have to change my bag every 5-7 days. It’s become pretty obvious to me when my seal is starting to become less secure, allowing me to make an educated guess as to how long I can wait before I change it. Knowing that I have a 2-3 day window for bag changing has taken away some of the stress and anxiety I felt, not knowing if I would have time to change it on a specific day. I can plan that I’ll change it on day 5 if I know I have a busy day scheduled for days 6 and 7. I also know that I can probably push it to day 6 if day 5 is completely out of the question.
I still get a little anxious when change day is coming up, mostly when I notice that my ostomy, Coltrane, is being extra quiet and I realize it would be the perfect opportunity. There’s always a pang of worry that when I’m ready to let him breathe he’ll be in the mood to poop. It’s usually less of a problem than I make it out to be in my mind though; so overall my system seems to be working for me. After hearing a lot of people’s stories about having to change more frequently than I do whether it is due to leaks or just a shorter general wear-time, I am incredibly grateful to have a good relationship with my ostomy and work diligently to maintain it.
Since I have a routine and some confidence in my setup, it has become a little easier to mix things up and go on vacation with supplies in tow. After almost a year with an ostomy, I’ve changed my bag in at least 7 different locations and three different states. 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. That way, I felt comfortable disclosing that we shouldn’t make early morning plans on a specific day so that I could change my bag. 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 made me feel a lot more relaxed about it.
Recently, I went on vacation with my boyfriend and we spent a lot of time with some people who I hadn’t told 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. Unfortunately, our friends had scheduled a pretty packed day, including an event at a winery where I knew I would likely have something to drink. I had expressed concern to my boyfriend, knowing that I would be uneasy the rest of the day if I didn’t change before the wine drinking event so he was on board with helping me find a window. 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 tried to keep the extra stop short. In the end, we got home with an hour to spare and Coltrane was quite obedient during the change so it worked out. I was so thankful that my window of opportunity was perfect and my bag change happened in record time.
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. Most of the people I spend my time around know I have an ostomy, so even if I’m not pulling it out in front of them, I feel comfortable knowing that I could if I needed to. I am planning future vacations further away from home and will be making extra sure to leave time to change my bag, as I feel that will be key to feeling confident away from the hotel.
Do you schedule your change-day mornings differently than other mornings? How do you decide what day you’re going to change your bag?