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

Fighting to be heard in healthcare

I regularly find myself “nagging” at people because they’re suffering, but not contacting their healthcare professionals (HCPs). Often using reasons such as work or other commitments. We often don’t feel like we have time to be sick! So, as long as we can plod on, we do!

Many of us also don’t want to start the back and forth of fighting to be heard. We know that it’s usually not just one appointment and some answers. It’s multiple appointments, often trying to make HCPs believe how unwell we are because our bloods and Calprotectin are “within normal range”. That’s often a learnt expectation based on previous experiences. Even if they immediately say “OK. Let’s check where we’re at”, that means tests, waiting for the tests, and waiting for results.

In the rest of this blog, I talk about the difficulties we face and why when it comes to contacting our IBD team. I also share some of my experiences, and why it's important we take that first step sooner rather than later.

Check it out