Inviting your friends to be a part of your life living with an ostomy can be an interesting new experience. Should you tell them? Should you not? How much do you tell? How do you deal with any issues that may come up with your friends? There are a lot of questions that come up that don’t have easy answers.
My friends have always known I had Crohn’s disease. This was true because, first of all, I have always been fairly open about it, and secondly, there wasn’t an easy way for me to hide it. It was easier to let them know, rather than having them wonder why I was constantly running to the bathroom or why I always seemed to not be feeling well. Plus, once you start having continual hospital stays, they are going to find out.
And when I decided to go through with my ostomy surgery, that’s when I decided to start The Stolen Colon and my life has been an open book since then. That still doesn’t mean that it’s always easy to talk to people about it face-to-face. But unless you go to great lengths to not let others know about your surgery, your closest friends will know what is going on. Even then, if you don’t feel comfortable letting the know that you will have an ostomy, simply saying that you are going to have stomach surgery usually seems to suffice.
In my experience, I have found it very beneficial to talk to my non-IBD friends about it. For one, if I was hiding it, I think I would constantly be worried that they would catch a glimpse of my bag or that my stoma would make a funny noise. Now if it does, it’s not a big deal. And secondly, I have found them all to be very supportive and I think of it as an opportunity to educate others and spread awareness.
I try to explain it in as simple of terms as possible. I’ll explain Crohn’s disease and the surgery and what that means for my life now. I also let them know how much it has changed my life for the better. I’ll even show them the bag sometimes, if they are interested and if I feel comfortable doing that.
Still, only you can know how much information you want to share with others. I don’t think there’s anything wrong with sharing as much or as little as you like, depending on the relationship. Don’t feel pressured into doing either one.
I think the trickier part is simply dealing with your ostomy around your friends. My very first leak actually came when I was at church with a friend of mine. I could just smell a little something, so I ran to the bathroom and realized what was going on. (Thankfully, it wasn’t a bad leak and I was close to home.) But I had to go back to my friend and tell her, in the middle of the service, that I had a leak and needed to go home, since she had driven me there. She was great. She took me right home and made sure that I was OK.
Another difficult scenario for me, is being at a friend’s home when my bag needs to be emptied. Honestly, I often find myself leaving someone’s house once it comes time to empty my bag, since I don’t want to have to do it at their house. It usually depends on whether or not we’re close to the time where I would have considered leaving anyways.
If the person’s house has an upstairs bathroom, or one that’s further away from where people are, I try to use that one, if the friend doesn’t mind. But of course, there always comes a time where you’re just going to have to do it. I try to always use drops in the bag that help with odor any time that I won’t be home for a while. The best option I have found for actually emptying it is to lay some toilet paper down at the front of the bowl that will catch most everything. That makes it so it will flush much easier and won’t leave any marks on the toilet bowl.
The worst feeling in the world is when you’ve just emptied your bag and the toilet won’t flush it down!! Thankfully, that has never happened to be at a friend’s house, but it has happened when I’ve been out somewhere else and it’s still an awful feeling (and a very quick run out of the bathroom!)
I know it can be difficult to speak to your friends about everything that you are going through, but I have come to find that they can understand a lot more than I think they will sometimes. I feel very blessed to have friends who have always stood by me, no matter what. They have definitely made this transition so much easier and I realize all that I would have missed if I hadn’t been willing to talk about it. Plus, my stoma making funny noises is always good for a laugh!
What has your experience been in telling your friends about your ostomy? Have you had any other types of situations you’ve had to learn how to handle with your friends around?