There is definitely power in numbers when you have IBD. I started thinking about this after learning about the Crohns Colitis Foundation of America’s “Power of Two” program where they pair a newly diagnosed patient with someone who has had either crohns disease or ulcerative colitis for a while. I honestly don’t know much about it having never participated in it but it got me thinking about way back when I first started looking on the internet for support.
When I first got sick, I had very little interest in connecting with other people and I really didn’t until after I had my first or second surgery (can’t even remember). My mom was given the name of a great site called www.jpouch.org which allows you to create a user name and profile in order to communicate with other members of the community. There are chat rooms, forums, and a lot of available resources. You can communicate with other members privately if you wish and they always have live chats.
Nowadays there are a lot of support groups, pages and sites but many of them aren’t anonymous. Sure you can join a closed group on facebook but people can still figure out who you are. This site was absolutely life saving for me at a very tumultuous time. It allowed me to talk to other people and learn a little bit about what my body was going through without the pressure of anyone knowing who I was. It was the only way my parents could really get me to open up a little bit. And through this site and these amazing people, I actually attended a group get together when I was about 16 in Massachusettes. I met one of the founders of the site who had a kock pouch and even though I was the youngest person there by about 20 years, it was still an incredible experience.
It was also through www.jpouch.org that I met my first two IBD friends. As with anything, you shouldn’t expect to join and then make lasting friends the first time you log in. It took me a while to find a few people who I really connected with and who I felt understood me and what I was going through. I used to spend hours and hours every day talking to my friend Kate. We literally talked about anything and everything. It was as if everything she said could have come directly out of my mouth. We were like kindred spirits. It made me feel so much better knowing that I wasn’t alone. Then life happened and we drifted but Kate was the one I emailed last June when I needed help making a decision about whether or not to give up my kock pouch fight. She put my mind at ease about living with an ileostomy. I am forever grateful to have met her.
Mal is the other amazing friend I met from the Jpouch site about 10 years ago. We have talked on and off over the years and I even went to visit her in the hospital after her first surgery. Coincidentally, a number of months ago this lovely lady resurfaced in my life and we are now very close. I love all of my friends but there is seriously something to be said for someone who has known you for such a long time. It took a brief catch up conversation and then it was just like old times.
I highly recommend this site for anyone who is newly diagnosed or just for anyone who has ulcerative colitis or crohns disease and isn’t ready to really reach out yet. It is a wonderful support system. You can just browse, see you are not alone, come and talk to someone from another country if you wish. It doesn’t matter. Sometimes just seeing that there are others out there who can relate makes a world of difference. Despite the name, it is definitely NOT just about Jpouches at all.
www.jpouch.org trust me ; )