This question is one that has crossed my path since my first ileostomy surgery which will be ten years ago on January 6th. The answer to this question has honestly really differed depending on what stage of life I was in but in recent months, I found myself thinking about this topic more for a few reasons.
The first being that I feel like I am finally coming to terms with the fact that having an ileostomy is really allowing me to live thus making all of the superficial reasons why I tried so hard to rid myself of the bag seem insignificant. The second is that I am now engrossed in a community of fellow IBDrs and ostomates who all have very different stories but at the end of the day, they all “get it” and the diagnosis or lack of a diagnosis is meaningless. And the third reason is because I have been thinking about attending some support groups but feel very hesitant about doing so.
When I had my first ileostomy from the ages of 16-19 I didn’t attend a single support group. My mom didn’t feel they were right for me and I had no interest in sitting with a group of people who were forty years older than me talking about issues that had nothing to do with me. I also felt like many of the ostomates had a bag as a result of cancer which I knew would just be too painful and unnecessary for me to hear. As a result, with the exception of my good friend Kate who I met through the jpouch.org website, I did my best to stay away from any support groups and never used the word “ostomate” and even cringed when the term “ostomy” was used. I always made (and sometimes still do) my parents use the word bag instead.
On Sunday, I went with two IBDrs (Jeffrey LeVine and Michael Weiss) to visit a 9 year old boy in the hospital who has an ostomy. I believe HIPPA won’t allow me to reveal anything else about this boy’s condition but I can say that when I found out he did not have an ostomy as a result of ulcerative colitis or crohns disease after I committed to going to visit him, I was unnerved to put it mildly. I felt trapped because I knew Michael and Jeffrey would not be able to visit with this young boy and his parents if I was not there (neither of them have an ostomy so they needed someone who had one to justify their visit). Anyway, I did go and couldn’t have been happier afterwards. It ended up being completely irrelevant what his diagnosis was or wasn’t. It just felt so good to feel like I helped a young child and his family a little bit.
When I got home from the hospital visit, I spoke with Ivy, the woman who was sending this young boy covers for his ostomy. She put his story on facebook and twitter and was really the reason why he and his family received such an outpouring of love and support. Ivy has an ileostomy and I am blanking on the reason why but she also does not have one as a result of inflammatory bowel disease. And for some reason, when she told me that it made things a little different in my mind. I had never spoken to her before and honestly never even heard of her so I don’t know why I just assumed she had a bag as a result of either ulcerative colitis or crohns disease but I did.
The older I get, the more people I meet, and the more stories I hear, the more I realize that none of our lives are exactly the same. As I write this I begin to realize why I clung to my friend Kate when I was 16 and 17 and 18 years old. We were very similar and I so desperately needed to feel like I wasn’t alone. I couldn’t bear being stricken with UC and feeling so isolated. I understand why my mom felt that attending ostomy support groups wasn’t the right thing to do and add to that, I wasn’t even ready to acknowledge that I had a bag at that time.
But now, I realize that the way we got here doesn’t matter. It is about all of us coming together as a community to help one another. It is about having people in your life that you click with and who understand you. I have a friend who understands what having an ostomy is like and all of the emotional parts of it better than many people who actually have one. She has even brought up some things that she thought may be difficult for me that I suppressed without even realizing. THAT is how astute this girl and friend is!
So, my point in saying all of this is that when I was younger and had an ileostomy I really did feel the need to be around people who ended up with a bag after fighting a similar battle. But now I realize that as long as you are around people who understand, who you can be yourself around, who you trust, who you feel safe with, who is nonjudgmental… the rest doesn’t really matter so much.