What people with IBD should know

I am often asked, “What would you tell someone recently diagnosed with 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 mean some lifestyle changes and som

Celebrating my achievements since stoma surgery!

I missed my stomaversary last month. For those not of the ostomy world, that basically means the anniversary of my stoma surgery. I have always been rubbish at remembering dates, so I only realised in the evening on October 17th because Facebook reminded me. I never celebrated a stomaversary with my last 2 either, so why change the habit of a lifetime?!

I’ve been busy with work and life, which in itself is a major improvement because 13 months ago I was just working and sleeping. Cooking had ceased, and I only showered when it was strictly necessary. I was flaring and exhausted, and I had lost my will to fight after many years of constant poor health.

This is the reason I thought it was worth writing a little celebratory post. I have had a great year, and it passed so quickly! To put this into perspective, I took a picture of my fridge magnet collection, from 2013 – 2019. I separated this last year to give a visual representation.

I often said it felt like someone had pressed pause on my life, and I can wholeheartedly say that I feel like it was un-paused a couple of months after surgery. I have done things in the last ten months that I haven’t been able to do for years! I have been to a spa, swimming, a theme park, the zoo, and to Extreme Scream (never repeating that). Plus, I climbed 199 steps to Whitby Abbey! 

I also got back to doing what I love; being online and supporting people with IBD and/or a stoma via social media and the #IBDSuperHeroes Facebook group. That led to opportunities I couldn’t even imagine! I was recruited by merakoi as an IBD Patient Expert, which has been super exciting and has meant I have been able to represent the patient voice to Healthcare and Pharmaceutical companies. I also started writing for InflammatoryBowelDisease.net! Plus, I am still enjoying my Trustee role at Cure Crohn’s Colitis, providing digital marketing and comms support.

It’s been a great year, so I am feeling positive about what the future has in store! As for my stoma, I genuinely feel like this “normal” is how it should be. It’s what works for me and it allows me to keep my life UN-paused. Yes, I am still taking medication on a daily basis and dehydration is a constant battle, but when I look at my life before, it’s a small price to pay.

So, happy belated stomaversary to me!