5 Reasons Why Everyone Needs an IBD Nurse.

As you may know- Crohn’s and Colitis UK are in the middle of a campaign to increase the amount of IBD Nurses available to patients. I am so incredibly lucky to have a fantastic team of IBD nurses and I wasn’t aware that 1 in 3 patients currently don’t have access to this service at all. This definitely needs to change. Here’s five reasons why I think every IBD patient needs an IBD nurse.

1.They are extremely knowledgeable about the disease. Every IBD nurse I’ve spoken to completely knows their stuff, because they’ve chosen to specialise in this disease and they’re dealing with IBD patients day in day out. Meaning they’re able to give you quick and accurate advice.

2.  They eliminate the nervous wait to speak to a consultant or getting a GPs appointment. My main  worry, when I moved back to England from China was having to deal with waiting weeks (or even months) to get peace of minds about my symptoms or blood results. My IBD nurse calls me back within 24 hours at the most; meaning my mind is quickly put at rest. As I mentioned in my blog on crohn’s and anxiety, worry is such a big part of IBD and this service is invaluable. Patients without this may have to wait to get a GPs appointment or even longer to see a consultant.

3. They bridge the gap between your GP and A&E. Don’t get me wrong- IBD Nurses are not an emergency helpline but the main think I see IBD comment that they’re symptoms aren’t severe enough for A&E but they need advice quicker than they can get into their GPs surgery. That’s where IBD nurse come in: they can offer advice on the best course of action and if you do need to go to A&E they can often refer you to them- saving time when you arrive.

4. They can make in clinic appointments. Many IBD nurses can access quicker appointments in specialist IBD clinics. In my case, making the average wait time to see a specialist go from months to within a week.

5. They are empathetic. Although I have had a great experience with the NHS since being diagnosed, the IBD nurses have been outstanding. They completely understand the disease and no questions are too much trouble.

It’s clear that IBD is a complex condition, needing guidance on everything from medication to symptoms to blood test results. In many ways living with IBD can seem like a full-time job, which is why it is so important every patient has access to such an important service. You can click here to send a very quick email to help CCUK in their campaign for everyone to access an IBD Nurse. After all, why should your postcode determine whether you should be allowed access to this vital service?

Make sure you read the rest of my posts on living with IBD!



  1. Jan Alston
    November 20, 2016 / 7:20 pm

    I have recently been allocated an ibd nurse. She is lovely but to be honest I feel that I know more about crohns than she does. All appointments are now with her and I never see the consultant. I had surgery 18 months ago and they removed 18 inches of bowel. This was supposed to relieve me of taking steroids but it hasn’t! She just told me to wean off the steroids with no suggestion of any alternative even though I told her how many flare ups I’d had recently when reducing the steroids. Bring back the consultants I say!

    • Healthyglobetrotting
      November 20, 2016 / 9:10 pm

      interesting alternative; i guess I’ve been really lucky with my IBD nurses!

  2. Jane
    December 1, 2016 / 12:16 am

    I’ve only just been diagnosed with Crohns and I feel as if I’ve dived off a springboard into an empty swimming pool. My consultant told me that I had Crohns and then told me that I needed to have octreotide for a month and then start azathioprine.I’d no idea about self injecting octreotide twice daily , so I called a help group who gave me the name of an IBD nurse. I saw him – told him all about octreotide as he didn’t know anyone using it and that was it. I called ten days later and spoke to a different nurse to ask for advice and didn’t get a response from her for 9 days!

  3. Stephie
    May 29, 2017 / 12:24 pm

    I never had access to an IBD nurse, I don’t think they were a thing when my disease was active. But in relation to my stoma care nurse they love learning tips and tricks that could potentially help others. I can only assume the same goes with IBD nurses since we are all INDIVIDUALS otherwise we would have found or come close to finding a cure. It’s the same with your GI it can take time for them to get to know you and how the disease affects you! I feel people never look at the wider picture and just the negatives on what could potentially help lots of people even with just someone to talk too.

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