I spent most of high school in pretty darned bad condition, and sometimes my illness wasn't too visible, but most of the time it was. I had skin problems, and my hair fell out, my gums and eyes were inflamed, and I was wasted and thin to the point where I looked years younger than I really was. On top of that, I missed 3 to 4 days of class per week when I wasn't just flat out gone during hospital stays. My classmates were actually really great in that they almost never let on that they noticed anything, and only occasionally did somebody make a tentative inquiry as to whether I was "doing okay." I always assured them that I was and made up excuses to explain, for example, my bright red skin: "Oh, I had a weird reaction to this soap. It'll go away." I lost track of what lies I told to whom, and looking back, that was NOT the best way to handle things. I just didn't feel like everybody knowing I had a serious long-term illness, even though they could pretty much figure that out for themselves. Only my close friends knew what was really going on, and even they didn't really ask for details.
I know there were other kids at my school with health problems that they mostly concealed, but then I sat next to this one girl in a jewelry class who wasted no time in informing EVERYBODY that she had Crohn's disease and a colostomy. It was pretty much the first thing you learned after her name. She actually talked about it quite a lot, in an almost jokey tone most of the time. In spite of this, she kept it fully covered by her clothing. I didn't say a word to her about my own Crohn's because I am not a talky person when you put me in a group of people. At that time, I didn't have an ostomy and wasn't too interested in hers. If I had been though, she would have had plenty to say. She gave a presentation about it to her speech class. She made a keychain in the shape of a colon. When that semester of jewelry class was over, I never saw her again, but I thought about her from time to time because she approached her illness in a way that was so different from my own methods.
After a little consideration, I understood why she chose to be so unusually forthcoming about her ostomy. Obviously, many of us have some anxiety over how to tell people or whether they might find out. From day one, this girl did not have to worry about that with anyone. They couldn't find out what they already knew. People she had gotten close to couldn't suddenly treat her differently because they'd befriended her with a full understanding of the circumstances of her condition. She might have seemed a bit odd with her eagerness to bring the ostomy up out of nowhere, but her carefree attitude reassured everybody that they didn't need to worry about it at all. All our classmates seemed to react well to this strategy, making friends with this girl in a normal and anxiety-free manner. So that's cool. When I told this story to my ostomy nurse though, thinking it was a bit of a funny one what with the keychain and all, she reacted rather badly, telling me it seemed like the girl was "fixated" on her ostomy and that I shouldn't let mine be such a big part of my life. Huh? It's a HUGE part of my life. I don't choose to view it as limiting me, but it has to be taken into consideration. There's a lot of responsibility involved in caring for it, for one thing, and I'm getting off my original topic. Anyway...
I wish now I had actually talked to the girl from my jewelry class, whose name I don't even remember, and maybe kept in touch with her. I pretty much act like an observer in most situations, but lately I've been feeling the need to be more proactive in my own life. Certainly being a bit more assertive paid off when I was in the hospital and medical professionals who ought to know better kept forgetting to give me my medications at the scheduled times. There are actually a surprising number of people on the internet who are willing to share just anything and make a video of it to boot, so before I even had my surgery, I had seen YouTube videos of people caring for their ostomies, dressing and exercising with their ostomies, and just plain talking about their ostomies and/or IBD in amazingly personal detail. The majority of them are female for some reason. Strange. This openness on their part made things so much easier for me because before I saw what they had to say, all I knew about an ostomy was that I didn't want one. Silly me, thinking that was a choice. What's great was the fact that my first real exposure to ostomies was through competent, positive, independent (young) adults who obviously had this thing under control and were living full lives. I was hardly even nervous by the time I had my surgery, though still a little bummed out about the whole thing.
Doctors, nurses, and especially ostomy nurses can't seem to stop telling me how impressed they are with how I'm handling this-- apparently it's some big accomplishment to change the bag and wafer on my own from the time I was discharged-- but really, a lot of the credit goes to all the people who offer so much support and advice and basically just remind us all that we are perfectly normal people. My family kept telling me over and over that I could still have a normal life, and I'm like, "I got that, thanks."
So, this post got away from me. I've got quite a stream of consciousness thing going on here, but at least I punctuate it properly. If my blog posts had a cumulative title, it would be "I talk way too much online to make up for the fact that I never open my mouth in real life." So. Bye now.
--Natalie
Why Join MeetAnOstoMate?
First off, this is a pretty cool site with 37,367 members who truly understand you.
It's not all about ostomy. We talk about everything.
Many come here for advice or to give advice, others have found good friends, and some have even found love. Most importantly, people here are honest and genuinely care.
🛑 Privacy is very important - we have many features that are only visible to members.
Create an account and you will be amazed by the warmth of this community.
37,367 members
Advertisement
Hollister
As a student, there are easy ways you can prepare ahead and manage an ostomy while you are at school.
Read answers to frequently asked questions about how to change your pouch and participate in activities.
Read answers to frequently asked questions about how to change your pouch and participate in activities.
Advertisement
Hollister
Urinary tract infections can still occur after urostomy surgery.
Learn about some basic diet and ostomy pouch routines that can help prevent them.
Learn about some basic diet and ostomy pouch routines that can help prevent them.