Support to manage IBD?
What kind of support do you have or wish you had to help manage IBD? Where do you find the most support?
I’ve locally found some support groups that meet up thru the Crohns & Colitis Foundation.
However, I always feel like I get more out of online since I can’t really ignore or cancel. I’ve had more than half my life & majority of that I’ve felt alone. I tried to even bring people together with “my own” little group but no one really was responsive
I think online support has been incredible. This community at inflammatoryboweldisease.net has enabled me to connect with several other IBD patients, some of whom have similar stories or experiences to myself.
I honestly think it's hard for people in my life to understand life with IBD, but they do always try hard to support me in whatever ways they can. My husband and I started dating more than 4 years ago, and his compassion and patience have ultimately been the best support I've received. I'm so lucky to have him 😀
I think CCFA also has some great resources, and activities like Take Steps or Team Challenge or Spin 4 allow patients to connect in person.
I get most of my support from my boyfriend who has been and angel throughout this difficult road. Also my family, especially my mother is incredibly helpful.
Most recently, I have reached out to the online community and in some ways have found the most solace there. I am a part of support groups on Instagram, I've started my own blog which has allowed me to meet others with IBD on a more intimate level and I am also a part of this community. It's wonderful to connect with others that really "get it," as they are living with the same challenges. You suddenly don't feel so alone.
I have also just reached out to the local chapter of CCFA here in my city and found out they have a support group that meets monthly. I think I may check that out. I encourage others to do the same. Support can be the best medicine.
Always dancing,
Elizabeth (team member)
For me, when I was diagnosed 14 years ago, there were no great resources. Google wasn't a great resource at that point and there were not many opportunities to meet others in your area that struggled with IBD.
I'm so glad how far accurate, fair research resources are available to anyone who has internet access. We've come so far as a community!
Kelly
