Confessions of an IBD nurse

Now I'm hoping that the first question that you're going to have for me is going to be along the lines of 'what is an IBD nurse?' For the benefit of my blog readers from outside of the UK an IBD nurse is often the lynch pin between all of your IBD medical team, they co-ordinate between the local doctors and your gastroenterologist for example.
I myself have not yet been fortunate enough to have glimpsed one of these elusive creatures of beauty nor have I stumbled upon one since receiving my diagnosis of Inflammatory Bowel Disease; so for many they remain no more than the stuff of legends! Lucky for me then that I should be so fortunate as to have used my whitt, charms and okay bartering skills to have wangled myself a quick interview via email with a delightful IBD nurse who goes by the name of Helen Ludlow. Based at the University Hospital Llandough, Cardiff & Vale University Health Board with 25 years of experience as a registered nurse with a background in A&E and acute admissions and 9 of those years as an IBD nurse under her belt she was more than ready to tackle the questions I had to put to her...

I began with the question we are all asking ourselves; what is an IBD nurse? What is your role in the care of a patient with Inflammatory Bowel Disease?
An IBD Nurse is a Clinical Nurse with specialist knowledge in Inflammatory Bowel Disease gained after extensive nursing practice and additional IBD Training. IBD Nurse roles are slightly different across the UK but generally we all see patients in Out-Patient Clinics (this can vary between fully managing the patients condition and treatment to providing a more supportive role once the patient has been seen by a doctor), when patients are admitted to the wards, running a Helpline/Advice service and monitoring the effects of immune system altering drug therapy.

How do you gain the aid of an IBD nurse? Who decides which patients get access to such a vital support system?
It all depends on which hospital you get referred to. The most recent National IBD Audit has shown that Gastroenterology departments with an IBD Nurse has risen from 56% in 2006 to 86% in 2014, however 37% of sites do not meet the required (by the IBD Standards) number of 1.5 whole-time-equivalent IBD Nurse per 250,000 population.

Are you on call 24/7? When's the best time to ring?
As most IBD Nurses have lots of other clinical commitments (in and out- patient work, endoscopy etc) most sites use an answering machine. The IBD Nurses only provide clinical advice and so queries about clinic appointments etc are best dealt with by clinic staff or Consultant secretaries.  Don’t forget that GP’s can also assess and provide some treatment, especially if the most recent clinic letter provides information about managing your condition in between hospital appointments.

Which question arises the most often?
The most common question is about diet, which is really difficult as there is very little clinical trial evidence that diet is a factor. The usual advice is to keep a note of what foods upsets you and try avoiding it for a while- you may or may not find it makes any difference though. However certain conditions, particularly Crohn's affecting the small bowel may benefit from some dietary changes and so do ask if you can see a specialist gastroenterology dietitian; although unfortunately not all hospitals have one.

Spill the beans...what are we too shy or too embarrassed to ask about?
People hate talking about their bowels in general! Remember that your team and the IBD Nurses will be used to hearing all sorts of things and nothing can phase them.

Look out blog readers this ones aimed at you, I hope that you're taking note...
What is it that we as patients are not very good at doing? What is your biggest frustration?
Missed clinic appointments are a real bug bear but equally we understand that life gets in the way sometimes. Make a note of your clinic date and let someone know if you cannot make it!

Do you have contact with the patients families in order to receive an overall picture?
We often meet or hear about patients families and any difficult issues as we know that stress and worry can often exacerbate symptoms. That’s the great part of this role; we get to know the patients really well often caring for them for many years, following them though the many ups and down of life.

With the basics out of the way it's time to dish the dirt as we delve a little deeper into the working mind of an IBD nurse, the questions that we are all eager to ask..

Name the best part of your job...
When you help a patient and they comment what a difference it made- that still makes my day!

The hardest aspect of caring for someone with Crohn's Disease or Ulcerative Colitis is...
When despite trying to manage their condition with the most up-to-date treatment plans they are still unwell. Obviously that is extremely hard for the patient and the family, but upsetting for the team looking after them too- we really do care about our patients.

Confess a secret usually reserved for the ears of other IBD nurses only...  what I'm trying to find out is whether or not you have a secret biscuit drawer??
I have a mug with the Bristol Stool Chart on it.

You are known as an 'IBD nurse' but what other names do patients refer to you as?
I seem to be known as “The bowel Nurse!” quite a lot.

Some other bits and bobs that I wanted to ask were...
Any advice for those facing a hospital stay? Is there something that we should remember to take with us... apart from the kitchen sink of course?
It is usually a good idea to bring your medication with you, not only so that the team looking after you know exactly what you are taking but you may need to use your own supply, at least for the first few days. Bring plenty to read and although many hospitals now have free Wi-Fi access remember to look after your valuables!

What areas of IBD do patients struggle with/to adapt to the most?
Obviously a major concern of most newly diagnosed patients is if they are going to need surgery and be left with a stoma bag. This is an understandable concern but generally avoided by surgical teams unless absolutely necessary. If it looks like this could be a possibility you will be provided with a lot of support and information beforehand by other specialist nurses.

In your opinion which area of IBD care is most overlooked?
Psychological support without a doubt also maybe sexual concerns.

Any advice on tackling that pesky chronic fatigue? Zzzz
Gosh, another difficult one. It is well known that most chronic diseases often result in chronic fatigue but we still don’t know the exact reason why, hence it is difficult to advise on. The main thing is to ensure that there are no medical reasons (like anaemia, thyroid problems, diabetes or depression etc) and that the drugs themselves are not contributing towards it. Interestingly, there is increasing evidence to show that exercise can help (even a moderate walk will help, you don’t have to take up a marathon!)

Any top tips when it comes to the dastardly colonoscopy/sigmoidoscopy prep? Urgh!
Most people will agree that the oral bowel prep is usually the worst part of the whole procedure. Unfortunately it is very important though. The high-tech endoscopy equipment these days are looking for minor changes that cannot always be seen by the eye- they use high power magnification and dye-spray techniques. Therefore it is essential that the bowel is as clean as possible or problems can be missed. My advice is read the instruction fully, even if you have had it before- information can and does change. Drink plenty of fluid and consider flavouring the prep with a non-blackcurrant flavoured squash (to avoid staining of the bowel) if necessary.

How do patients go about asking for an IBD superhero? Err I mean nurse ;)

You can ask your GP to refer you to a gastroenterology service that does have an IBD Nurse, although this may not always be possible. If you discover that your hospital does not have an IBD Nurse it is worthwhile writing to your Health Board to ask why there isn’t one and reminding them of the IBD Standards! > IBD standards *click here*

Any advice to those who aren't lucky enough to have an IBD nurse?

As mentioned write to your local Health Board/Chief Exec and ask why there isn’t one- because there should be! Any support that patients can give to helping the service development is gratefully received. See if your hospital has a patient panel; ours has! You can find out the name of your hospital’s Chief Executive by searching for your hospital online- they usually have full contact details on their website.

Are there any additional help or resources that you think IBD'ers could benefit from?
Make sure that the information/advice you read is from a trustworthy source [amen to that!] Over the years I have read advice that has been potentially dangerous and certainly misleading. If in doubt stick to the CCUK and the NHS Websites- their information is evidence based and supporting by IBD Specialist throughout the UK.

Any advice for new/other IBD nurses?

All of the UK IBD Nurses have a very close net-working group so make sure they are linked up with that.

Lastly but most importantly how can patients best say thank you for their care?
Just someone saying thank you is enough, but if they really want to help…. A letter to the Chief Exec/Chief Nurse always goes down well.

So there you have it folks! Be sure to always say a little thank you, learn as much as you can about your illness/ the medication that you're on and be sure to send a letter to the chief executive or chief nurse telling them how wonderful your IBD nurse has been!

With enormous thanks to Helen Ludlow for taking the time to speak with me in order to give us all a better insight into the mysterious world of the IBD nurse.