1 May 2016

#GetYourBellyOut's Second Charity Evening

Whilst my blog may have been a little quiet of late, I'd say that as a whole my voice has definitely been louder than ever before in my attempts to raise awareness of IBD. Where have I been and what have I been up to you may be wondering. Well...

As it turns out I've been keeping myself extremely busy over with the #GetYourBellyOut team. We've spent the last few months planning a bit of a party to celebrate the campaigns second birthday. Wait, where did the time go?! It seems surreal that the awareness campaign is not only still up and running but stronger than ever before. We have soooo many plans that I know for certain I won't be having much of a break anytime soon. It's a good job then that I love what I do! 

A party, for hundreds of guests with absolutely no money in the budget; how hard could it be right? Nothing; we started with zero, so it's a very good job that we have some amazing friends and have built up some wonderful friendships with various organisations which all have the same aim as our own; to make life better for those tackling challenging times with chronic illness. 

Last years party received some really lovely feedback of which we were keen to build upon. We're very fortunate to have such wonderful campaign supporters who go above and beyond for us all throughout the year so our campaign birthday we feel is the perfect opportunity to give a little back and to say thank you in the best way that we know how; by spending a whole weekend handing out hugs of course!

Many of our guests traveled down the night prior to the party as this gave everyone extra time to settle in and adjust from the lengthy journeys. Twice now we've selected a city in the centre of the U.K in order to give everyone equal opportunity to attend. Having IBD ourselves we understand the struggles which come with traveling such long distances but that doesn't deter those travelling from Ireland, the Isle of White and from as far away as America to join us for such a special weekend! 

The team spent all day and night working on the party preparations and sent out countless emails to drum up support for the event. Not only is it a marvellous opportunity for the IBD community to come together but it too is the perfect weekend to rebuild everyone's confidence in reminding them all that despite the enormous challenges ahead, we're all united in the fight against Crohn's Disease & Ulcerative Colitis.

For the past two years I've spent many hours a day talking with and providing support for many of these individuals whilst encouraging them to join in a vast array of fundraising activities but this year was my first real opportunity to meet such a large volume of our campaign supporters at once. Support of which we were able to continue providing thanks to the vast array of organisations which helped out with our informational goodie bags! 
If you're following my blog you'll know that I've struggled with crippling anxiety which meant that I missed out on so much of life. Of late I've made huge strides in tackling this fight so much so that I felt up to the long journey to attend this years event. A journey of which I could never have imagined undertaking during the time that my anxiety was rife. This gives me hope that others who find themselves in the position that I was in can hopefully take comfort in knowing that things can and do improve. Where two years ago I was feeling very isolated, now I feel a tremendous sense of belonging and I was keen to ensure that I could say thank you in person to those who have changed the journey that I'm on.

Walking into the hotel the night before our big party was a bizarre experience, recognising so many faces but having them stood next to me instead of them being on other side of the screen was a lovely feeling. This too was the first time that I had met my campaign co-founders since #GetYourBellyOut began two years ago! I was greeted with such a warm welcome, so much so that I didn't feel as if I was in the company of absolute strangers; everyone felt like old friends.

I'm glad that I traveled up the night before the party as this gave me a wonderful opportunity to meet, hug and chat with a large number of our campaign supporters. Looking back over the party weekend I'm thankful for having made a head start in greeting many of our party guests on the Friday night as during Saturday's party I hardly got a chance to sit in my chair with having so many inspirational guests that I wanted to meet and spend time with! 

Saturday afternoon it was all hands on deck to decorate the venue in anticipation of our guests. I like to run a tight ship and our team was wonderfully accommodating to my instructions and demands. We (the founders) honestly couldn't achieve the work that we do without all of the extra hands on board which support us and aid us every step of the way, therefore from myself it's a huge THANK YOU for all that you do and have done for us. 
This year the campaign received soooo much amazing support and generosity that I'm still three weeks later trying to pass on my thanks to all that were involved in making our night so magical. We truly appreciate how lucky we are.

After a mad dash back to the hotel for a cheeky nap and to throw my party frock on I was off once again to the venue... Only this time we would be welcoming our guests. I'm not well known for my emasculate time keeping and this weekend I did absolutely nothing to dispel this myth, I ended up getting into the lift with some of our super eager party guests! Great first impressions eh. 

We knew that this year we were aiming to squish as much entertainment into the 7 hour party as possible and crikey did we fill the evening. It was lovely to see such a great turnout and everyone looked fantastic. 
It's overwhelming to be in a room filled with over 200 inspirational bellies, even more so having guests thank us for all that we do alongside sharing stories with us of how the campaign has changed or saved their lives. Many had made a real effort to dress up despite not feeling very well which takes some inner strength which we admire these bellies for. As I wasn't able to attend last years GetYourBellyOut charity evening I let my co-founders take the lead with the speeches and running order of the night knowing full well that I was in good hands; they did a marvelous job! 

The 7 hours passed in the blink of an eye. It was challenging to ensure that everything went to plan (even the surprise proposal went without a hitch whoop!) whilst trying in vain to relax and enjoy the whole evening. As I mentioned earlier, I hardly got a chance to sit in my chair before I was up on my feet once more dancing, circulating, selfie taking and hugging as many bellies as possible...same again next year maybe??

*With special thanks to Clinimed and Securicare, Vanilla Blush, Clothes2Order & Salts Medilink for their continued support Xx

7 December 2015


It was asked of me by the wonderful charity Crohn's and Colitis UK to keep a diary during the next seven days to document what it's like to live with/alongside Inflammatory Bowel Disease (IBD). If you've not already done so then be sure to join in with their latest awareness campaign which is taking place between 1st-7th December by sharing your photos and own experiences across social media using the following #7DaysOfIBD hashtag as well as keeping your eyes fixated on the #GetYourBellyOut campaign's Facebook page for a little fun activity.

Why is it important to share ones experiences you may ask? Everyone's journey of tackling IBD will be extremely varied and each will have a different story to tell.  By sharing your stories and tales of hope you instill strength, courage and inspire others who may be tackling similar experiences; this can be extremely comforting for a patient who may feel a little lost and like no one truly understands. 

It's been said that we face many difference stages when attempting to accept, process and deal with a chronic illness such as Crohn's Disease, Microscopic Colitis or Ulcerative Colitis many of which I have documented in my own blog. From the anger, frustration and sadness to the hope, fundraising activities and awareness campaigns that keep us all going. So over the next few days I shall do my best to share my honest thoughts with you all and document my activities whether they be eventful or not! 

Day one of this rather bizarre experiment as although I write the occasional blog post I don't keep a diary so I'm rather curious as to why I've agreed to let you all in on my boring week ahead but we shall give it a go...
Unusually for me I am taking you all shopping with me; okay so it may only be in the virtual sense but still I'd like to welcome you all along for the ride. I'm heading to the shops to find a new frock for an up and coming event hosted by none other than Crohn's and Colitis UK. If you follow my blog you would know by now that I've had a pretty tough time of late tackling my plight with anxiety which has kept me locked away at home for the last two years as I lost all of my confidence with having Ulcerative Colitis and trying to maintain a hectic social/work life. It could be said that I took myself out of the rat race for a while to focus on ME... which is sort of what we are up to today. After having spent so long cooped up indoors it transpires that I own no appropriate adult clothing; jeans and a
 comfy jumper simply won't cut it at this volunteers event that I've crazily signed myself up for. I'd like to set somewhat of a good example and not rock up having the whole room wonder how such a quiet lass has somehow co-founded the most successful global IBD awareness campaign to date! Have I mention that yet?
At present I somewhat struggle with being outside mixing with the public but I'm far too frustrated with missing out on so much of life to be left at home any longer so it's time to put my game face on and head out into the world! 
Two hours in and I've bagged myself what I feel is a cute frock and a petite jacket to keep warm in this wild British weather. I stopped off for pizza but couldn't enjoy my meal for the anxiety was running away with me. I worry about bumping into friends or people that I know for I'd like to avoid disgruntled conversations with those of whom are starting to forget what I look like as it's been so long since they saw me last. How is it I'm well enough to venture out when I've not made time to catch up with those I hold dear to me? Truth be told I simply want to focus on myself, as selfish as that may sound I'm working hard on my own recovery by popping out for a short while without wanting to explain why I'm not yet up to the task of rekindling friendships that have become strained during the last few years. Home time can't come quick enough! Get me out of here. 

Day two and after yesterdays adventure to the shops today's looking like yet another pyjama day. I'm feeling rather exhausted after my trip out but I'm refusing to return to bed; fatigue you shall not win! I'll be honest in saying that often chronic fatigue is one of the biggest hurdles to tackle. I've previously written posts on the topic and about how my 'pyjama day turned into pyjama week' as an insight for those attempting to understand the true battle with this pesky symptom. So instead of a jam packed day its a few hours shlumped infront of the tv with a cuppa to keep me warm. A day filled with social media scouring it is; what's the latest in research, who's inspiring story is going viral today, can I help to reassure anyone within the IBD community so on and so forth. As much as I enjoy my role as an IBD advocate it too is tiring, I'm only too aware that I've not written any blog content for well over a month as I can never find the time or energy to compose a coherent blog post. I don't want to throw just any woffle together I want my content to resonate with people...so as a result it tends to get put off. I shall aim to finish my well overdue blog post hopefully by the end of the day (am I being a little too optimistic?) followed by popping a card in the post to wish a delightful #GetYourBellyOut campaign supporter well as she recovers in hospital after her latest surgery. Ideally I would like to have access to enough means to be able to sponsor each of the wonderful fundraisers who are stepping out of their comfort zones to raise both funds and awareness for IBD as well as have enough energy to write to and support many of our campaign supporters but truth be told many days I simply don't have enough time for ME let alone anything else. I find my day taken up with working on designs for the campaign which is constantly evolving; sorry blog post you shall simply have to wait. With being so busy it's late evening by the time I realize that I've completely forgotten to take my daily morning medication, here's hoping that my health won't suffer as a consequence of my forgetfulness doh. Is it sleep time yet? 

Day three shall mostly be taken up with packing for my trip away. Attending this volunteers event by Crohn's and Colitis UK will comprise of travelling the furthest distance since my troubles with anxiety began. It goes without saying that the nerves about travelling over an hour and a half with having Ulcerative Colitis is rather daunting but I'm determined not to miss out. Whether it takes me two or three hours with all of the service station stops along the way I WILL get there!! I'm only too aware that my enthusiasm may wane the closer I get to setting off but for now I'm enjoying having something to look forward to. I'm keen to meet fellow volunteers who are the heart and soul of the charity, I too am keen to hear everyone's ideas on how we can continue pushing the awareness of Inflammatory Bowel Disease into the public domain. There are many reasons why I campaign so tirelessly for awareness and one of these is to encourage fundraising because lets face it... the sooner that we raise a heap of money and attract some of the greatest minds into the field of IBD research the sooner we will all be able to have a brighter future. Who doesn't want to work towards such an amazing goal right? Two days until take off and I'm feeling pretty okay. 

Four days in and I'm feeling overwhelmed. I do my utmost to support the IBD community but at times it all gets a little too much. Today (as often) I receive messages from those tackling Inflammatory Bowel Disease who tell me that they're struggling. I have absolutely no medical training aside from a one off first aid course over ten years ago but that doesn't count right? I feel helpless and like my support is inadequate for ultimately I am not the correct person to support these individuals with the strains that this cruel destructive illness places upon people. What am I to say to someone who tells me that they're in floods of tears, the support from their care teams is lacking and that they're struggling to cope? The reality is that the correct support systems simply aren't in place for people who are distraught and often in desperate need. Over the last two years since I threw myself into the online world I have dealt with many suicidal patients and had to support many individuals who are a threat to themselves. This leaves me feeling angry; where is the support for these lost souls? Where?! If I wasn't volunteering my spare time to the online IBD community (as thankfully so many others do) who would be there for the countless individuals who rely upon me for support? Something which I don't like to think about but in reality...I too am attempting to deal with and process my own journey with Ulcerative Colitis so I simply can't be there for everyone. I'm now geared up ready to ask for change! Where are the offers of counselling, life coaching or bereavement support teams? Truth be told it simply does not exist. The best we currently have is an information/support phone line run by volunteers at Crohn's and Colitis UK [Click here for more info and contact numbers]

Day five means only one thing; travel day! I'll be honest in saying that I didn't get much sleep last night and today fatigue is kicking my ...! I'm feeling determined not to let it get the better of me but frustrated with how long it takes to resemble something that looks like a 'normal' human being. Why is it that the healthy spend time trying to convince their employers for example that they're sick when those tackling a chronic illness spend so much time and energy trying to 'blend in' by attempting to avoid looking like the sick kid. I find myself checking and rechecking the traffic reports and circling every service station along the route...needless to say the worries of travelling with a dodgy colon (even when in some kind of self diagnosed remission) leaves me running behind schedule. This is good practise for turning up on time tomorrow with a room full of people waiting for me ...and my dodgy colon to pull ourselves together. Here goes nothing! Wish me luck. Yikes!  

Saturday marks the sixth day of my diary shenanigans and I'm sure you'll take great pleasure in knowing that although I survived yesterday's journey I did manage to make a bumbling fool of myself at the hotel check in by being so fatigued and caught off guard that I failed to fully recognize Dan Mclean director of marketing, communications and membership at Crohn's and Colitis UK; great start hey!
Here's hoping that today turns out better however I'm not setting out on a positive note as sods law would have it my Ulcerative Colitis has decided to play up right when I'd like it to make itself scarce. Having IBD is totally a viable excuse as to being late right? 
Aside from the dodgy painful colon trying to slowly kill me off I would say the days been a great success. As always it's a joy and a pleasure to get an insight into the busy behind the scenes world of Crohn's and Colitis UK. It's been interesting hearing about all of the up and coming plans that they're hoping to implement over the next few months as well as meeting many of the wonderful volunteers. Although I'm totally worn out after today's brainstorming session I still manage to find the time to squish in a beverage with a good friend whilst I'm visiting their city before clambering into my bed for the night. 

Day seven and I've woken up feeling like I've been hit by a truck in the middle of the night, my whole body is struggling today so much so I'm even failing to 'do human'. The exhaustion is ridiculous as I'm finding even the basic task which consists of standing up a struggle so today's motto shall be to keep putting one foot in front of the other. It's your final day with me so let's make it a good one, today I plan on visiting the zoo before heading home. I can't say that I'm looking forward to the return journey so for now I'm going to enjoy my time scouting out what wildlife this city has to offer and no I'm not referring to the locals ha!  After a long journey with many service station stops and plenty of cups of tea along the way I manage to make it home. Almost flattened by the cat as I open the door she's now sat firmly on top of my suitcase; I think it's safe to say that neither of us have any intentions of moving any time soon! 

29 September 2015

I have a disability; there, I said it!

I think it's fair to say that people with invisible illnesses spend a great deal of time trying to convince the medical professions that they are genuinely sick and are in desperate need of the extra support that we find ourselves asking for; after all we know our bodies the best so know when something isn't right. Believe me when I say that individuals with chronic illness will only ask for extra help and support when we genuinely need it. Think about it....if you spent so much of your existence in the hospital/ attending appointments, would you then go and spend even more time in the waiting rooms? I think not; so why do we struggle to get people to believe us when we are genuinely sick. "You don't look sick to me" jeez thanks a bunch, in which case just discredit my burning internal pain seen as I've gone out of my way to brush my hair so that I do not offend anyone as I stroll on by. Maybe the lack of compassion from the medical profession is down to being rushed off their feet or having encountered troublemakers in the past and therefore are cautious about making the same mistake twice.
Why do we even need to convince people in the first place you may be asking. Believe it or not... try as we might, we're not indestructible. For the most part individuals with chronic illness simply plough on through life making the most of things. So when someone is reaching out asking for extra help the least you could do is be a little supportive. It seems so silly that we have to make it so glaringly obvious that from time to time we/ I will need extra support, whether that be emotionally, mentally or physically. There will be times when I turn to friends or family for extra comfort, these are the times that I am struggling the most so please don't make me feel even worse by having to explain in great detail why I need your support. 

I have attempted many times to open up to close friends about my illness and at times I thought that we were making great progress. I understand that there is no manual for being friends with someone who has a chronic illness and I understand that at times it must be tough but just when I feel like we are on solid ground silly remarks pull the rug from under my feet and it feels like we are straight back to the start. 

'My journey is not the same as their journey' I find myself explaining one evening. I can't express how frustrating it is when people compare individuals with chronic illness or how judgemental people can be to those with invisible illnesses. "My friends cousin has that illness and he gets on with things just fine" "Someone at work has the same illness and they work full time" okay great, point duly noted.... what about "My friend has that and is in the hospital fighting for their life". Yes exactly.... comparing chronic illness is a silly thing to do; it benefits no one. I believe that these things aren't said out of malice and friends/family feel like they're trying to encourage us, when in reality they're just making me feel worthless. Don't you think that I am doing the utmost to tackle my own journey with an invisible illness? Do you feel that I'm simply not trying hard enough? 

"Yeah but like you don't have a disability do you?"
'You're disabled under the Equality Act 2010 if you have a physical or mental impairment that has a 'substantial' and 'long-term' negative effect on your ability to do normal daily activities'- Extract from https://www.gov.uk/definition-of-disability-under-equality-act-2010
Both Crohn's disease and Ulcerative Colitis do fall into the remits of having a disability. Surprising as it may seem a person can be seen as having a disability despite having all of their working limbs in place and none of their senses missing (common sense is omitted from this example). "I don't want to be seen as having a disability; I don't want to be treated any differently to others". Great news, there are procedures in place which hopefully prevent a person with a chronic illness being treated unfairly or being at a disadvantage to others. Personally I have no issues with declaring myself as having a disability if it means that I am given the same level playing field as others. I am no less able than the next person... providing that provisions are put into place for me. 
Despite my gutsy attitude to tackle whatever comes my way, I too have to be realistic in accepting that there will be days when I simply cannot get out of bed, or days that I will have to give up as I need to spend time in the hospital... on these occasions I am thankful that I can class myself as having a disability for it enables me to extra support when I need it the most. I am not invincible, nor is my chronic illness steering the ship; it is an equal partnership where each party has a mutual respect and understanding for one another. I do not feel the need to run umpteen marathons or tackle the highest mountains to prove my fighting spirit to the world. 'Courage doesn't always roar. Sometimes it's the little voice that whispers... I'll try again tomorrow.'

28 September 2015

Chronic illness stole my identity!

It is well documented throughout my blog that over the last six years of having Inflammatory Bowel Disease (in my case Ulcerative Colitis) that it has taken a huge toll on almost every aspect of my life; of which I'm sure many can relate to. Over the years my behaviours, emotions, life choices, plans and thought patterns have all been impacted by this lifelong chronic illness that I now face. Admittedly last year was the toughest emotionally for me as it would seem the events that have surpassed since my diagnosis all caught up with me and the emotions hit me like a ton of bricks. My chronic illness has affected so much of my life that it's been challenging to process all of the new changes. Friendships have been stripped away, a change of employment is on the horizon, even simple things have been impacted such as debating whether to give up the independence of being able to drive as fatigue has made itself an annoyance in my life. As documented I spent many a week or month in my pajamas as the worry, anxiety and emotional distress took a toll on my body in the physical sense and I found myself struggling with chronic fatigue. Pajama days became the norm as too did the deafening silence of my mobile phone, somewhere along the line I become forgotten/ left behind whilst I attempted to process and 'deal' with all of the new changes that I now face....I too realized that I had lost my identity along the way.

Somewhere along the line I realized that my chronic illness had stolen my identity. I would spend so much time filling in various forms that it often felt like I was swimming in paperwork; I can't say that I've ever filled in such vast amounts of paperwork than I have done since my diagnosis. It's frustrating feeling like the whole world wants a piece of you while all that you strive for is to be locked away and left in peace and quiet to process your own thoughts. However these days I find myself in a better frame of mind with a brighter outlook on life. Prior I found myself avoiding contacting friends as I felt like we had nothing in common; the issues that I felt were most important to me ..they didn't understand the significance of. This is where social media and building a strong support system comes unto its own, being around others who 'get it' and celebrate your small wins can bring a huge amount of comfort at a time in which you feel like the rest of the world doesn't understand.

One aspect that I've seen mentioned more than I would like to see within the IBD community and something that I have experienced myself  is this sense that our chronic illness sends us back to the drawing board. Often the plans that we set out for ourselves change or we find that we have to abandon some ideas all-together ... however the remarkable thing that I've seen many times over is this incredible ability for those with chronic illnesses to adapt and change to whatever comes their way. Disheartening though it may be to have to change so many of the dreams and goals that we set ourselves, we too have this remarkable way of adapting so that our illnesses don't end up victorious; in some cases chronic illness spurs many of us on to achieve greater things than we would have if we hadn't been forced to stop and look at the world from a different viewpoint. I've lost track of the number of times I've had to return to the drawing board since my diagnosis; It is hard and difficult to deal with so many set backs in life and having to start from scratch again. At the time it all seemed a little overwhelming though now I feel like I am in a much better place to tackle what life has in store for me.

I've found my zest for life once more and it's a nice feeling after such a long time of moaping around feeling sorry for myself. Once more I am finding the enjoyment in things which gives me hope that others in my position will do too. If you do have to wallow....just ensure that it doesn't last as long as mine did ;) I'm making great strides on the journey I'm currently tackling with anxiety which in turn feels like a weight has been lifted. I am no longer feeling like the world is against me, instead I am curious to see what it has to offer me. For now I'm not looking too far ahead but more-so enjoying the moment while it's here. You may have noticed that I've not been great at keeping up with my blog and partly that is due to trying to find a balance, it's a fine line between becoming absorbed in a world of social media and taking the time to enjoy the outside world. For a long time I've felt torn between the two as I am only too aware of what a huge help the online community can be...it too can become a little overwhelming being around a community where someone is always so sick/unwell.

So for now I'm busy rebuilding the friendships that have over the last two years become strained whilst I locked myself away at home trying to regain my focus and direction in life. Still I feel as though I've no immediate direction to head in but for now I am enjoying reconnecting with the outside world. My blog may have been a little quieter than usual but please be assured that I am working hard on building awareness for inflammatory bowel disease! With that said I was recently able to attend my first awareness walk in aid of Crohn's Disease & Ulcerative Colitis horrah! It was really enjoyable to be able to speak face to face with so many individuals who I had spent time talking with over social media. It too is a great feeling to see so many people supporting the same cause with the same end goal in sight; a cure for both Crohn's Disease and Ulcerative Colitis.  I will of course keep you all updated with any further developments as and when they come. It is so important to have faith and hope that the future will be brighter for it's what keeps many of us going.

29 June 2015

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.