What people with IBD should know

I'm often asked, “What would you tell someone recently diagnosed with Inflammatory Bowel Disease (IBD)?” So, this is what I think you should know! Look out for clickable links in this blog, leading to more detailed information! For many, a definitive diagnosis is a massive relief after a long period of being unwell. This does not mean that acceptance is easy, after all, you have just been diagnosed with a chronic disease which has no cure. Do NOT panic, we’ve got this, life is not over! It is worth pointing out that no two IBD patients’ lives are the same. The disease does not always manifest in the same way, and the fact that a treatment works for one person does not mean it will work for another. This makes IBD notoriously difficult to treat. That said, some IBD patients may have one flare, find the right medication straight away and never have another, and that is fantastic! For the rest of us, being diagnosed with Crohn’s Disease or Ulcerative Colitis may mea

An open letter to Matthew Perry regarding his stoma experience

Dear Matthew,

First, let me briefly introduce myself. I am an inflammatory bowel disease (IBD) and ostomy advocate, and I've been active in these online communities since 2014. I've spent the last eight years trying to make a difference. Put a little good out into the world. Give people with IBD and stomas support, information, and understanding. And most importantly of all, hope. I run #IBDSuperHeroes, a support, awareness, and fundraising project.

I've seen a lot of anger directed towards you in my community during the last week. I should make it clear that I haven't hunted for every article, nor have I purchased your book. I thought for a while about whether to even bother adding my own post to the countless thoughts and opinions already being shared in the community. I concluded that everyone is entitled to an opinion, including me, but most of all, including you.

I know how the media works. I understand that most journalists already have their angle before they start writing and that facts are rarely a priority. I don't know what words you've truly said and written about your experience with a colostomy. What I do know is that you have a right to tell your story. Your truth. I also realise that you had your own angle, and a particular audience in mind when writing it. Telling a community of addicts: "Don't worry if your colon bursts; stoma surgery and life with it are a breeze", wouldn't have the impact you probably thought was necessary to dissuade.

My truth is that my first ileostomy, in 2007, was an emergency, and I hated it. I was diagnosed with ulcerative colitis just 6 days before, at 19 years old. I didn't know what an ileostomy or a colostomy was. I knew I HAD to be grateful for the fact that it saved my life, but I didn't want it for a second longer than needed. I saw a quote in a Yahoo article that said you were grateful "because it helped me stay alive", so I think you understand what I mean.

For me, a reversal wasn't simple. I had to have a replacement rectum built from my small intestine, which needed time to heal. Being so unwell prior to the emergency ileostomy meant that I was "stuck" with that stoma for two years. I constantly experienced leaks and burnt skin. I didn't know how to cover it up, so I wore baggy boy's clothes and stopped wanting to leave the house. I hated my life with it. I hated the version of myself I was with it. When it had gone, I knew I wasn't willing to go through that experience again. I'd genuinely rather die.

Fast-forward to 2014, and I was told that yet again, I was going to need an ileostomy. I fought it. I demanded a second opinion. I was absolutely terrified because I felt like I was going to be left with no other option than to take my own life. It's worth pointing out that I was on a hefty dose of steroids and they may have been a factor in my mental health's downward spiral.

I am lucky because I was already involved in the online IBD and ostomy community at this point. Had I not been, I don't think I would be here today. I got the support I needed to make it through the surgery I ended up having as yet another emergency. The community shared its strength with me, and allowed me to heal, physically and mentally within its embrace.

I've seen people saying that you're a liar, or questioning things you've said about being covered in shit 50-60 times, it being on your face, and stating there's a lot of suicide in people with an ileostomy.

I can't pretend I remotely understand what it's like for a recovering addict to be faced with an emergency stoma. I know I've been covered in shit A LOT in the hospital. The initial erratic output, ill-fitting bags, and changes to my weight after surgery have meant that being covered in shit in the hospital was a pretty regular occurrence, whilst it never actually happens to me at home! I've experienced hallucinations, sleepwalking, sleeptalking etc so I certainly won't call you a liar if you say shit ended up on your face!

As for the suicide, I honestly don't know the stats. I've read media articles in the last few years about people not wanting to live with a stoma. Seven, a 10-year-old boy, was bullied about having a colostomy bag and hung himself in 2019. In 2020, a judge ruled a man in his 30s should be allowed to die because he did not want to live with a stoma. A 2020 study looked at hopelessness and suicide ideation in ostomy patients and reported suicidal ideation to be high in the first six months post-surgery.

We live in a different world now compared to when I had my first stoma. There are so many people raising awareness and sharing their journey with their stoma online. Personally, I do think that some people only appear to be sharing the good. I understand that they're aiming to show people that life can still be great with a stoma, and I agree, it can. For all I know, maybe all they experience IS good... But I think it can be harmful to those needing a stoma to only see the positives. It rarely starts out great, and those struggling end up feeling like they're somehow doing it wrong. I try to share a balanced view. I think it's important for people to know that not everyone living with a stoma is always doing great. There are down days. There are bag malfunctions. With the right products and support, these can be minimal, and THAT is what I focus on letting people know.

It's difficult, as an advocate, to see such horrifying things written, knowing that these words will be seen by so many. It can feel like an uphill battle, trying to get the general public to see stomas as less disgusting. It's hard to think about these words being seen by people waiting for stoma surgery. Many who read it will face a stoma in the future but have no idea yet. If the only thing they've ever seen about stomas is the current articles circulating about your experience, of course, they will be petrified. This makes me sad.

However, I don't think anyone has the right to dismiss or minimise your traumatic experiences or be angry at you for sharing something so raw for you. My heart goes out to you, and I truly respect what you're trying to do in helping other addicts.

Thank you for sharing your journey. I promise, it matters.

Sincerely,

Sahara Fleetwood-Beresford


P.S. I still love f.r.i.e.n.d.s