…or so I thought.
I mean, honestly, the idea of attending a “support group” just sounds, well, not fun.
Attending a Crohn’s and ulcerative colitis support group never really crossed my mind as I was growing up, but when I knew that I was going to move forward with the surgery to get an ileostomy, I felt the need to find other people who had been through the same thing. Dealing with health issues can feel very lonely. I lived with everything that comes along with Crohn’s disease for a long time all by myself. I think I sort of got used to the loneliness. But when I knew I was going to have an ostomy, I really felt that loneliness again and wanted to find someone to talk to about it.
So I decided to try out the local ostomy support group. My husband and I went to a group that was meeting just a few days before my surgery. I’m not going to lie, we walked in and saw only people over the age of 65 and we got a little nervous. At first I think we hoped we were in the wrong place, but just stood in the back for a minute contemplating leaving. But then a girl about my age came up to us and introduced herself. She had gotten an ileostomy the year prior, also due to Crohn’s disease. At that point, I felt so much better. Even being in a room where I was one of the few even from my generation, knowing there was someone else there who could understand and was going through some very similar things, made me feel comfortable.
It ended up being a great meeting and since then, I have met some wonderful other people, some my age and some not, who have become good friends from that group. I found that I really enjoyed getting to know to know those a little outside of my age group. They are a fun and interesting group and many of them have had an ostomy for decades and have good advice, or at the least can tell you from experience how far we have come in ostomy care!
Yes, there are times when I feel a little outside of the group and may run out of things that we have in common to talk about, but it’s also great to see these people living good lives after going through their own surgeries. I also think back to that meeting last year and know I probably would have walked out that door if that girl hadn’t come up to speak to us and I would have missed out on a lot and probably would have felt alone for a much longer time. That’s another part of the reason that I kept going back. I hope I can be that person for someone else who is new and scared comes in and feels like an outsider.
I spent 13 years not really talking about the things that I have dealt with. I was never ashamed or tried to hide it, but I didn’t usually bring it up unless someone asked. Since having my surgery, I have attended both this and a Crohn’s and ulcerative colitis group and have reached out to people online and been more open with the people in my life about it and I have found what an amazing difference it has made. Having others out there who you can talk to and know that they understand what you are going through has been a real blessing for me.
If anyone asks me now for advice for someone newly diagnosed, I always say to find some other people who can relate. I feel like a giant weight has been taken off of my shoulder and I feel like I am no longer going through this all alone. I have a great family out there who I know will always support me.