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!”
I was diagnosed with in 2015 when I was 19 years old, after my bowel perforated due it being so severely diseased.
I had been unknowingly living with for years — with symptoms such as chronic constipation no matter how many laxatives I took, rectal bleeding, abdominal pain, and excessive weight loss.
I had seen multiple doctors who each either misdiagnosed me or ignored me, labeling me a hypochondriac. The most common consensus seemed to be that I was just dealing with bad periods.
Clearly, this wasn’t the case.
Due to the perforation of my bowel, I was given a bag. The whole experience was traumatic and confusing for me. I’d never heard of IBD, let alone stoma bags.
After getting over the initial shock and pain from the operation, the first feelings I felt were fear and loneliness. I didn’t know where to turn.
I hadn’t met (at least I assumed I hadn’t met) anyone with IBD or a stoma before. I was able to ask medical professionals questions, but I needed someone who I related to.
I needed the comfort of knowing I wasn’t alone.
Finding the support I craved
Around 4 weeks into my recovery, having left the hospital just a week after the operation, I spent the night on Google looking for online or chat forums I could join.
There didn’t seem to be much support for young people. Everything seemed to be catered to older adults, which is fitting, considering so many associate stoma bags with older people.
I came across a couple of chat forums, but they didn’t feel right for me. It was instant messaging and anonymous, a large group chat with people from all over the world. It didn’t feel personal to me — and I didn’t feel comfortable not knowing who was behind the screen.
It was admittedly very hard to find online support simply through a search engine, so I decided to have a look on Facebook, instead. There were multiple groups to join, catering to people with IBD and people with stomas (and a mixture of both).
I joined three groups and found that each group was helpful for different reasons.
One was an incredibly large group managed under a prominent IBD charity, another hosted events for people with IBD and gave opportunities to meet others in similar situations in real-life, and the last was for people under 30 with IBD.
IBD Facebook groups have been absolutely invaluable to me ever since. I found them comforting from the get-go.
The groups were so active, with new people joining every day and sharing their stories.
There would be threads where people could introduce themselves, and it often just so happened that members were local to each other and would meet up for coffee.
Meeting my best friend
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.
Getting advice from people who have been there
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.
You’re never alone
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.
Hattie Gladwell is a mental health journalist, author, and advocate. She writes about mental illness in hopes of diminishing the stigma and to encourage others to speak out.