How online support groups can help during an IBD flare-up
There’s nowhere else you can write about being stuck on the toilet in a flare and have someone reply: “Me too. We’ve got this!”
Not only did I get support for living with IBD, but I met two of my best friends through online support groups.
I’d spotted my now best friend, Danielle, posting frequently on the group for under 30s. She was just a year older than me and seemed very similar to me in many ways: creative, makeup obsessed, and very active on social media. She also had a stoma bag.
She was the first woman I could relate to not just on an illness basis.
What started with chats about our conditions quickly turned into more common conversations, sending memes and simply talking about our day and our problems.
Five years after joining the group, we’re still best friends. We talk constantly, every day. She lives a few hours away from me, but we meet up at least once a year, and she’ll stay with me for around a week.
Despite her living so far away, it’s the best and most pure friendship I have — and one I know will never fade.
It’s mind-boggling to think that I’ve gone from not knowing IBD even existed to having friends who completely understand what I’ve been through because they’ve been through it themselves.
Not only are online support groups beneficial for meeting others you can relate to, but they’re a great resource for information.
I learned so many tricks to making life easier with a stoma bag, such as which sprays stopped any odor, which medications were best for slowing down bowel movements, and how to make natural hydration drinks without spending loads of money.
It was also great to see other fashion-minded women offer tips on which shape wear is best and where to find lingerie you feel comfortable in.
Ten months after my stoma bag operation, I decided to have a reversal (the medical term for it is ileorectal anastomosis). It means my small intestine has been attached to my rectum to allow me to go to the bathroom “normally” again.
It was a hard decision to make, because the stoma bag had saved my life, and the idea of undergoing more surgery was daunting. Looking online for experiences of reversals wasn’t helpful because most were negative.
What I realized is that this is because the people who had positive experiences aren’t generally online talking about them — they’re out living their best lives.
I think had I not been a member of online support groups, I may not have had the surgery.
Being able to reach out to thousands of people on a private platform meant I could get honest experiences, both good and bad. It meant I could also ask follow-up questions and query things I was most concerned about.
Ultimately, it led to me deciding to go through with the surgery, knowing I had people to come back to afterwards for further support, information, and advice.
When you live with IBD, you rely on the medical advice of doctors and specialists, which of course, is absolutely right.
But it can be hard to actually get that advice due to limited appointments and access to these professionals.
Online communities aren’t the place to receive professional medical advice, but you can receive personal advice from people who get it. It’s somewhere you can ask questions that don’t necessarily warrant professional advice, but the advice of someone who has walked in your shoes.
Ultimately, it’s up to you to decide whether to seek professional advice, but knowing support groups are there means you’re never alone with your problem.
My favorite thing about online support groups is knowing that I’m never alone, because the community never sleeps. Not all at once, anyway.
There’s nowhere else you can write about being stuck on the toilet in a flare at 2 a.m. and have someone reply: “Me too. We’ve got this!”
For that, I will be forever grateful that online support groups exist.
Read full How Online Support Groups Can Help During an IBD Flare-Up by Hattie Gladwell.