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

Self-care series | Communicating with your healthcare team

For your healthcare team to do their job properly, they will need your input. You need to take responsibility for your health and do what you can to enable your team to work WITH you. It's important to you both, it's their job and it's your quality of life and body, so establishing effective communication is key.
Buying a notebook that you can designate your "IBD notebook" is worth doing. Jot down any questions that you have between appointments so that you don't forget to ask them. You should always take this notebook with you, even when you don't have any questions. Reviewing the symptoms you've been tracking and making some bullet points could prove useful, and will save you trying to make sense of a lot of months worth of data on the spot, during your appointment. There is nothing worse than leaving an appointment and feeling overwhelmed by the amount of information you have just have received, and feeling like it's all just seeping out of your head. Note down anything important during such as follow up appointments, test outcomes and plans/medications going forward.

When you're flaring, create a plan with your IBD team. Don’t forget that you need to be happy with this plan, and if you are not, you have the right to say that, and to make changes. This will function as your guide and should set out what happens in the next 6 months. For example, if the first medication you're taking is for 8 weeks, what happens if these are not effective? This plan is then in place to put your mind at ease and for the specialists to follow, meaning less time between medications should they not be working for you.

When you're not flaring create a plan for when you are. Most hospitals are happy for you to take home blood forms and sample pots to use as and when you need to, saving the initial wait for an appointment, just to do the generic tests when you feel like a flare may be on its way.

Those that have access to an IBD nurse should use them to report new symptoms, or simply to ask any questions you may have related to IBD. Not everyone has an IBD nurse, so the wait between appointments can seem long. Make sure you note down any questions you may have!