#7DaysOfIBD

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! 

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.'

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.

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.

Fight or flight?

If you're following my blog you will know by now that I'm attempting to tackle an ongoing plight with anxiety which I believe is linked to my diagnosis of Ulcerative Colitis. To date I've briefly mentioned it both HERE and HERE but I've not really taken the time to understand the true meaning of anxiety. It's important to stress that I am merely a blogger not a doctor so please note that I am only documenting my personal experiences with both Ulcerative Colitis and Anxiety. Therefore should you need to please seek help through the appropriate channels (Hint; I am not one of them).

When I first experienced the physical symptoms of anxiety I wasn't quite sure what to make of it all. I felt frightened, a bit silly and overall exhausted by the whole process. Most of all I felt alone... that was until I stumbled upon another blogger who happened to mention that she too had dealt with anxiety. Knowing that others with Crohn's Disease or Ulcerative Colitis were experiencing the same thing as myself was extremely reassuring. So with that said I hope to continue the chain by allowing you all to accompany me on my journey of learning, tackling and hopefully overcoming or at the very least managing the physical symptoms brought on by anxiety.

What is anxiety? I hear you shout. Great question!
'Anxiety is the feeling we get when our body responds to a frightening or threatening experience. It has been called the fight or flight response. It is simply your body preparing for action, either to fight danger or to run away from it as fast as possible'
^ Understanding this basic explanation I found to be very insightful and calmed a lot of my initial worries and fears... 'The purpose of the physical symptoms of anxiety therefore is to prepare your body to cope with threat'. [An extract taken from the NHS's anxiety self help guide of which I'll explain a bit more of later on.]

So you see the jelly legs, panic, trembling and all out crying is all a part of your body's response as it tries to decide if you're going to stay where you are and tackle whatever it is that you're feeling worried about or whether (like me) you act on an overwhelming urge to leave your current surroundings which you feel uneasy in. 'Even before I get there I start to worry about all the things that might go wrong. When I arrive my heart starts to pound, my legs turn to jelly and I just know I'm going to make a fool of myself. I have to get out' [Again another extract from the NHS self help guide]

How does anxiety manifest itself?
Symptoms of general anxiety disorder listed on the NHS's website are as follows;

Psychological symptoms
   * restlessness
   * a sense of dread
   * feeling constantly 'on edge'
   * difficulty concentrating
   * irritability

Physical symptoms 
   * dizziness
   * tiredness
   * a noticeably strong, fast or irregular heartbeat
   *  muscle ache and tension
   * trembling or shaking
   * dry mouth
   * excessive sweating
   * shortness of breath
   * stomach ache
   * feeling sick
   * headache
   * pins and needles
   * difficulty falling or staying asleep
For more information about anxiety see the NHS website by CLICKING HERE

Knowing that your thought processes are being validated was of a great comfort to me. To know the reasoning why you're acting bizarrely and not overall just dulally has helped me with coming to terms of having anxiety.

According to this self help guide there are four different areas that we can work on in trying to overcome anxiety, these are;
* understanding anxiety better and beginning to tackle some of the causes.
* reducing physical symptoms.
* altering thoughts related to anxiety.
* changing behaviours related to anxiety.

Okay so to be completely honest I didn't take too much away from the NHS' anxiety self help guide but it was a great place to start in my journey. I found the guide to be a bit hit and miss with regards to having anxiety related to a diagnosis of Inflammatory Bowel Disease but it definitely gave me some areas to think about and to work on.

Assemble an anxiety diary!
If you're at the beginning of your troubles with anxiety then I thought the suggested idea of assembling an anxiety diary was a great tool to have. You're encouraged to list down over a period of two weeks (or longer) any instances when you feel uneasy. 'Rate your anxiety from 0-10 and note down anything that seems important. Were you at work or home? Who were you with? What were you doing? What were you thinking about?'
The hope is that you build up a picture of the times when you're feeling most uneasy about your thoughts, feelings or surroundings. Is there a 'trigger' to your worrying. Of course once you can pin point this then you can work towards counteracting your behaviour.  

If you've read my previous post 'feeling caged' then you'll know that my chosen strategy has been to take things one small step at a time. I've found that over time our thought processes can become a little excessive and out of proportion to the situations we face. Staying at home, head shoved firmly under the duvet (although most comfortable and the easiest option) only seems to exacerbate things. It's far too easy to snuggle up enjoying those pajama days than it is to put on a brave face and challenge the outside world. At one point I had gotten myself into such a pickle that it was easier to just stay indoors. However over time I started challenging myself, whether it be a super short car journey or a brisk walk up the road. Find an excuse to get out of the house, no matter how close by you remain until you rebuild your confidence. Slowly but surly over time you will pick yourself back up and come to realise that what you think 'the worst case scenario' is...won't always happen, if it even happens at all!

One way I am tackling my anxiety is by doing just so. I try to keep moving by little outings here and there. More likely than not they are spur of the moment rather than making any formal plans which do nothing but pile on the pressure for those of us with Inflammatory Bowel Disease. One of my usual jaunts is to the post box and back, a round journey of 15 minutes or so. It may not seem like much but it helps to clear the mind and whilst out I get clarity as to how disproportionate my feelings become whilst I am cooped up at home. Turns out I rather enjoy the outside world even if at the minute I spend most of my time avoiding it.

Set your sights on something!
Life passes us by at a super quick speed. It's easy to get lost from day to day. Truth be told there have been many occasions when I've lost track of which day of the week we are on. For when cooped up within the confines of your own home things such as the time or the day of the week pale into insignificance. One thing I set my sights on was a relaxed cup of tea not too far from home. This has been something I've put off for a REALLY long time. Although I've wanted to go, at the time when I made the plans it was a step too far for me. Yesterday I GOT THERE! Yes, little worried me made it as far as the coffee shop without freaking out and wanting to flea to the safety of my own home. To some this may feel like a small feat but to me it is hopefully another steppingstone on my road to overcoming these hurdles in life.

Am I rid of my battles with anxiety? Nope but I do definitely feel that I've come a long way since the symptoms of anxiety started to creep up on me. As of yet I do not have many of the answers needed to overcome these niggling feelings but I am hopeful that slow and steady will win the race.

If you are in need of extra support because of anxiety please contact your healthcare providers.

'My illness doesn't define me'

My illness does not define me...

Here's a quote that I've heard many times over. For a long time I sat on the side of the fence which declared 'my illness doesn't define me' and in some respects you're correct, your illness (can be) a small portion of your life. In the sense that there is so much more to you, there are many more building blocks/puzzle pieces that make you into the person that you are today. You may choose to use your illness as a way of pushing yourself to reach for goals that you'd otherwise not have aimed for or maybe you're stronger today due to what battles you've had to overcome.

There is no denying that having a chronic illness impacts your daily life whether we choose to embrace this fact or not. In my case having Inflammatory Bowel Disease means that a lot of the days decisions are based around taking medications, avoiding certain foods, filtering through the types of invitations to certain events/days out and activities etc. It's a constant thought whether you're aware of it or not, it's usually lurking at the back of the mind.

Obviously I can't speak for everyone but I'm sure that many would agree with me when I say that having a chronic illness has an impact on the people who they surround themselves with. I've heard countless times of how once someone is diagnosed with either Crohn's Disease or Ulcerative Colitis that a portion of people pack their bags and run off. Which is such a shame in a sense as at the time of diagnosis you need your friends/ loved ones more than ever. However the opposite tends to happen where a certain portion of people who were once present in your life move on to other pastures. Those who are left are the ones we all treasure most; the friends, family and loved ones who stand by us through thick and thin not the flimsy acquaintances who never made the cut.

Truth be told the only option those diagnosed with these illnesses have is to 'suck it up and get on with it' (What a stupid saying anyways...) We are supposed to 'make the most of it' and take life by the horns. Usually this is how the years pan out as we all simply take it one day at a time HOWEVER there are times/days when I shut down, I curl up into a ball and I want to ball my eyes out.

(Yes, me...the woman fundraising, advocating and running a global awareness campaign I cry :P Get over it ha)

'Just don't think about it' <-- hands up how many of us battling a daily fight with Inflammatory Bowel Disease have been told to 'not think about it' or 'think positive'.
'Not thinking about it' is not an option for me as my illness effects many of the choices I make throughout the day. Have I drunk enough? Which foods will land me up in A&E? Have I remembered my medication? Have I ordered enough medication? When's my next appointment/check up? Have I filled in all of the outstanding paperwork? How many people will I end up unintentionally p*ssing off today?

'You're getting consumed by your illness' <-- anyone heard this one? Yep me too! Truth be told, it's nay on impossible to get through a single day without thinking about my chronic illness in some way shape or form. Most days I 'make the most of it' as complaining and shouting 'why me' gets you absolutely nowhere but doing so doesn't stop the random moments when it all becomes too much and I become tired of playing this game.

I am tired of being poorly I'm sure many others would agree, but I too am tired of not being able to enjoy the simple things in life. I miss the simple pleasures in life that everyone takes for granted. IBD is a HUGE part of a person's life, not only for the person diagnosed but it effects the whole family and your network of friends.

I find myself encouraging you all to find your own voice, mainly because I have seen first had what an impact one lone voice can make. One lone voice is helping to educate others, one lone voice is helping to fund-raise, one lone voice CAN and DOES make a difference! You only have one life, so why spend it hiding? Be the person you were always meant to be ....or at least be the person you deserve to be, without hiding. You are you and you have a lot to give! So what if your body is broken or you are an emotional wreck...so was I! So am I. I feel I can sit here and push you to gain a better/brighter future...for I have been through the same journey myself. I have NO IDEA where I am going, what the heck I am up to or where I will find myself in another years time. All I do know is that I hope I am still trying, for that's all I can ask of myself.

When I began my blog my mind was turning to mush as it had been so long since it was put to good use. I found myself doing puzzles and quiz books just to keep my mind active. These days I have the creativity and outlet to express things through my blogging, advocacy and campaign work which reinstates my belief that although my body is broken I still have a huge amount to give the world! As you do too..find that one thing which challenges you. I'm sure you've had to abandon some of life's plans along the way but make new ones. Set yourselves something to look forward to for these days help us to get through the rocky road ahead.

Am I at peace with my illness...NO; but I am learning to live alongside my illness. I am not as of yet at one with my illness but I am slowly navigating my way through life alongside my chronic illness. My wish is for you to become comfortable discussing your own journeys with Inflammatory Bowel Disease, adapt life to better suit your needs and that you too can find a support system that works well for you.

So again we come back to the question of, how can we say a diagnosis of a chronic illness doesn't define a person when it impacts so heavily on the choices we make, the people we surround ourselves with and the ways in which we adapt our behaviour, careers and routines? I suppose in some ways we try to push our illness to the back of our minds so that it doesn't take up all of our time but I mean that's still a pretty difficult feat. Maybe accepting that your chronic illness defines you is in some ways 'letting the illness win'? We'd all like to prove that we are stronger and ready to tackle it head on right? I believe that your chronic illness shapes the person you are today whether for better or worse, you have a small part of your character which is defined by your chronic illness.

Online Vs Offline

Something I've been attempting to get my head around of late is this whole idea of 'online vs offline support'. It goes without saying that there are both positives and drawbacks to each of these forms of support but I think overall things work best with a mixture of the two. Which is where I'm currently at, getting a good balance between the support that's offered online vs the support of those I can poke in the eye with a stick eehee I jest!

I think this applies to many who find themselves having to face extra challenges in life, whether that be down to circumstances or an illness for a vague example. We're somewhat drawn to this BIZARRE online world. Lets face it, when did sharing such trivial updates such as what we're having for lunch become 'the new norm'. Don't get me wrong I can completely see how we get sucked into this twirley, whirley, sparkley doo dah kind of world for it brings a sense of escapism. For that hour or two (okay or more) that we pop online we're using it as an escape from the confines of our reality.

At times there is nothing greater than that fuzzy feeling you get from a catch up with family, friends or loved ones over a nice cuppa. Spending hours putting the world to rights amongst those who know us best usually results in having that extra spring in our step which propels us on and helps to get us through the remainder of the week. Alternatively there are times when we want to yell, rant, scream and poke said people in the eye with a stick because they struggle to understand the exact nature of the challenges we face so with that in mind we pack up our imaginary sticks and head for our social media outlets instead.

It's comforting to seek advice, friendship and support from others who are in a similar situation as oneself. It's also reassuring and refreshing to hear other peoples perspectives on life as a whole as well as hearing from others who we can share 'inside jokes' with. Sometimes not having to explain ourselves in great detail is a break from the monotony of continuously explaining why we're acting and feeling in peculiar ways.

Personally I find the online world completely bizarre, people have the freedom to be whomever they wish to be or more commonly are able to put their 'best foot' (image) forward. It's far too easy for people to put forward a false sense of who they are just as it is far too easy for us to get sucked into believing that others live a better/ more fulfilling lifestyle than our own. This too can be seen for example amongst those who are tackling illness as 'competition'; we can look to others and think 'they're coping with this so much better than I'. We tend to overlook the little things like how many photographs were taken before that particular pristine photograph was achieved, are there filters and alterations at work unbeknownst to us, or we fail to see all of the pajama days that take place in-between one photograph and the next... all we see is the image people want us to see 'the finished product'. So with that in mind the support offered online CAN make us feel worse in the long run.

How much is too much? I've heard it said a few times now about how we can become a little lost somewhere between being supportive and letting other peoples trials and tribulations overwhelm us.
I worry that we're becoming too reliant on such things as support groups/forums. Time and time again I stumble across those who are looking for advice in the wrong place. There is an important need for support groups to ask for advice, share information and gain support...it's another thing entirely when we begin to dish out medical advice for example. Two issues, poles apart ...which tend to blur in the middle somewhere. As the bright advocate Sara Ringer  once tweeted 'I can answer 90% of questions asked in #IBD fb [Facebook] groups/pages with one phrase "Call your doctor!"'. Couldn't have said it better myself.

There too is this funky craze within support groups where people squabble, fall out, bicker and have a difference of opinions which then lead to personal jibes, digs and hurtful insults. I fail to see how adults lack the ability to have a difference of opinion or approach difficult subject matter without wanting to claw each others eyeballs out. Surly somewhere there is a line, one of which that gets missed time and time again. These quarrels do no good for anyone's health, which should be a priority. If social media is having a negative effect upon your health or state of mind...it's probably best that you turn it off all together.

It's not all doom and gloom... for there too we find inspiration, drive, confidence and courage online. We can become inspired by someones journey, thought process or resilience. Online we share a wealth of creativity, information, quotes and campaigns all intent on making life a little brighter for us all. A problem shared is a problem halved and it's always nice to know that no matter what hour of the day or night there are always people online who are willing to listen...but what about those folk offline? Those who we're too busy to call, text or see all because of the all consuming presence we have online.

I think the key is to find a balance, one of which I am trying hard to find. I am passionate about raising awareness of Inflammatory Bowel Disease both online and offline, I am keen to campaign and fundraise...I too am keen to ensure that I take the time to build a life for myself, support my friends, as well as taking care of the virtual five thousand.

Surgery...yikes!

WAIT!! Please don't flee ..it's important we discuss this.

I like to write my blog as it's interesting for me to look back on the different stages of my battle with Inflammatory Bowel Disease. I read over some older posts and the feelings that I've written down are rather foreign to me in the present stage of my journey. To say that Ulcerative Colitis is a roller coaster of a ride is an understatement, highs, lows, to hell and back and to think things have only barely began. I am now some 5 years into this daily battle but trying to accept that I will be lumbered with this for life (as at present it is incurable) is rather too much to take in.

As I compose this post there are IBD'ers that I've come to know who are currently in the hospital, battling dark days and others heading towards yet another trying time with surgery. The hard cold facts about Inflammatory Bowel Disease is that there is no 'wonder drug', it is all trial and error to try and 'sustain' ones 'health'. Some days are better than others but as of yet there is only one grim way out, one that I don't wish upon anyone and am doing my part to raise awareness so that we can in future eradicate this illness.

Who will face surgery?

Source: Above stats taken from Crohn's and Colitis UK. Crohn's and Colitis Foundation of America also state 'one quarter to one third of patients with Ulcerative Colitis' 25-30% / 'two thirds - three quarters of people with Crohn's Disease' 60-75%  

I'll not write about the ins and outs of surgery or draw you some doodles as frankly I'm not a doctor, my doodles would be AWFUL and there are wonderful IBD charities that have done a brilliant job at explaining in depth what surgery entails. Therefore if you would like to know a little more about surgery with Crohn's Disease or Ulcerative Colitis then here are some great links>
Click here for information on surgery for Ulcerative Colitis.
Click here for information on surgery for Crohn's Disease.

Surgery, yikes! I know its super scary and the stats aren't great but unfortunately it is a very real possibility for those of us who have Inflammatory Bowel Disease. If you shove your head under the pillow the risks don't decrease! Hopefully by reading about it and doing some research your fears wont be as bad in the long run. Forewarned is forearmed as the saying goes, some people don't get this chance and land up having emergency surgery. So if you can, do  little research into it.

Previously when I was super run down, exhausted, confused and lost, I once asked my gastroenterologist if he could just whip out my colon to save me from this illness. At the time he giggled at me and I'm glad that he did, as I was only at the beginning of finding a treatment that works for me so don't be as hasty lol I didn't understand Ostomies, knew not of how they worked or what their purpose was. I was naive to the idea that you have surgery and all is fixed...that's not always the case. Removing someones colon is NOT a cure for someone who is diagnosed with Ulcerative Colitis but a drastic treatment option as the delightful Marisa from @JournalingIBD explains>
Click here to read 'Can Ulcerative Colitis be cured?'

Surgery is just yet another drastic 'treatment option' one that I find hard to comprehend. I know we have no say in who will land up on the operating table and which of us will not but my head still can't get around the fact that surgery 'may' one day be my only option. *Note to future self- how are you getting on?*
There are many wonderful IBD advocates who are extremely inspiring and who let us into their journeys following surgery.These delightful people let us in on their worlds to help, advise, educate and prepare us on what life could be like. While some people struggle to cope with the new change, others take well to having an ostomy and feel that it has given them a better state of health .

One such ostomate is Eric; creator of Vegan Ostomy @veganostomy who is just outstanding at the awareness he raises and the advice he offers to anyone who comes knocking at his door (of the social media kind that is, the bloke lives in Canada and not even I am making that trek from here in the UK). Vegan Ostomy churns out blog posts, product reviews, videos, you name it ...the man knows about it>

Stephen, creator of Behind The Times @sdempsteruk was not so fortunate in having a 'heads up' about surgery. Having first known about surgery when he was rolled into theater to have a resection (part of his colon removed) due to his bowel rupturing (We'll hold the Crohn's Disease accountable for that one!You meanie you!). Again Stephen is a wonderful advocate for IBD who too blogs about his experiences in the charge to raise awareness.

How do I think I would react to needing surgery? I'd probably try to flee, barter my way out of it or cry like a child for weeks on end. In all honesty I don't think that I would cope well with the procedure or any of the immediate aftercare. Do I see myself accepting surgery in my near future? Hopefully not, my current strategy is to hold out as long as possible and hope that we continue to make advancements with the medications available to those of us with Inflammatory Bowel Disease. Could I see myself maintaining an ostomy? hmm I think I could. Would I be any good at it? No idea at all! For now I don't see surgery in my future but am only too aware that it is always an option. Some people with Crohn's Disease or Ulcerative Colitis get the choice of surgery while for others it is a 'last hope' as they have trialled every other medication available to them. I don't feel that I will be one of the 20-30% of Ulcerative Colitis patients who will need surgery but if it does happen at least I am now a little more prepared and educated on the topic.

So as you can see I have nothing to offer up on personal experiences with surgery and IBD but I thought it would be a good opportunity to document my thoughts and feelings to compare where I am at in the future. For now maintenance medication option 1 (Pentasa/ Mesalazine) is still working well for me and in the meantime I'm hoping that new advancements in treatments will continue coming to the table. I feel like we are making headway into understanding a little more about how Inflammatory Bowel Disease behaves even if we as of yet do not understand any of the what, who's, or why's of the blooping illness.
My thoughts are with all of those who are currently tackling a hospital stay; keep strong, keep fighting Xx