On this day… 26th August 1997

26th August 1997 is the day I was admitted to hospital with symptoms that, 3 months later, led to my diagnosis of Ulcerative Colitis.  Although there are things I want to forget, there are things I can’t forget, things I have forgotten until I remember and that day falls into the category of things I want to forget, but can’t.

I was at school, not long started back after summer holiday, sitting going through my two times tables and, as I was a stubborn child, I didn’t want to interrupt the lesson by saying I was unwell, so I kept raising my hand in the hopes that I would be picked and I could let the teacher know I wasn’t well, that wasn’t the answer to “2×6”, but I was heard and asked to sit at my table until the maths lesson was over. During that time, my classmates looked after me. They fetched me wet paper towels when I was too warm, offered me their cardigans/jumpers when I was too cold and walked me round to the medical room once I told the teacher just how ill I was feeling and they gathered my belongings and sat with me until my mum arrived to take me home. Sadly I repayed one of them by vomiting all over her new school shoes (and managing to reach my mum’s in the process).

Once home, I was struggling to remain conscious, one minute it was me and mum, the next my GP was examining me, and then my mum was crying as she phoned for an ambulance. Then I woke up in the ambulance, vomited in the oxygen mask, and then my dad was with me and my mum in the A&E cubicle.

For a few months prior to that day, I had been experiencing a frequency/urgency in bowel movements, often with blood, or mucus and severe pain and cramping and my parents were worried, however on seeking guidance from out of hour services, they were advised that the blood would cease as it appeared that I had burst a blood vessel due to the increase in bowel movements, and that would heal.

For over two weeks I underwent a variety of investigations and examinations (scans, endoscopies, stool tests, blood tests) and thankfully my mum was allowed to stay with me in hospital. I was in a room by myself as doctors were unsure if I was contagious, or at a severe risk of infection.  I always remember my brother coming to visit (bringing some school work with him) but he wasn’t allowed in my room for a few days after admission due to the uncertainty of my condition and I hated not being able to spend time with him, yes he mainly teased me, as older brothers do, but he also knew how to make me laugh and have fun and he was my friend. One perk to my admission was that he bought me presents, a lion teddy bear, which I called Leo, who was allowed into some of my procedures so I didn’t feel lonely, with the doctors and nurses even performing the procedure on him and a Get Well balloon, which is still intact!

Over the years I’ve realised that my inspiration for becoming a nurse came from the wonderful care I received on the paediatric ward, my maturity came from being classed as an “adult” at age 12 in the world of health care. My determination came from being so acutely unwell at the age of 19 that I was required to be placed in isolation at Ayr Hospital and being told that “surgery was my only hope”. Becoming a mental health nurse improved my confidence when talking to my care team about my health and reinforced to me that patients can make a change in the way they receive care, regardless of their diagnosis end encouraged me to self manage my conditions. I’m very fortunate in regards to my health as I have been able to have my condition managed with a combination of support, medication and self management and I am honoured to be a champion and an ambassador for Crohns’ and Colitis UK, The Health and Social Care Alliance Scotland and to be in a position where I can offer peer support. It has taken me a long time to be comfortable with my diagnosis of Ulcerative Colitis, but it’s a part of who I am, and I’m going to do whatever the hell I can over the next 20+yrs to fight and win the battle against it.

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Time for a flare.

It’s been a while since I last wrote a blog, however I recently posted a picture of on my social media accounts depicting what it is like for me to be in a flare and a few friends asked, “what does a flare mean”? A number of my friends are aware of my Ulcerative Colitis diagnosis, but unless they have seen me unwell, many do not understand what it can be like for me. It was an incredibly difficult decision for me to make, I have a habit of hiding myself away when I flare as I don’t like people seeing me unwell, however that does nothing to reduce the stigma of an invisible illness and I felt it would be a good way to showcase what I talk about when I’m invited along to do awareness talks.

I thought I might use this opportunity to talk about Ulcerative Colitis, about the diagnosis and what a flare up is, but more so what it means for me.

So firstly,

Ulcerative Colitis (UC) is a form of Inflammatory Bowel Disease (IBD).  It’s a chronic condition where I go through periods where I suffer from no symptoms, or times where my symptoms are more active, what I call a flare.

UC is a condition that causes inflammation and ulceration of the inner lining of the rectum and colon (the large bowel). In UC, tiny ulcers develop on the surface of the lining and these may bleed and produce pus.

Symptoms of UC that I suffer from include:

• frequency/urgency in bowel movements
• bloody diarrhoea
• pus or mucus in stool
• fever
• pain/cramping – to the point where I am unable to stand for longer than 5minutes.
• nausea/vomiting
• mouth ulcers

 

Unless I am becoming acutely unwell, it is unusual for me to suffer all of these symptoms at the same time. When I flare, my problematic symptoms are pain/cramping, and increase in the frequency/urgency of bowel movements and nausea/vomiting and they are incredibly debilitating.

As well as the symptoms of UC, there are also a number of other complications, for me, I suffer terribly with joint pain and was diagnosed with osteopenia (a medical condition in which the protein and mineral content of bone tissue is reduced, but less severely than in osteoporosis) a few years ago. My lower back is affected the most and often when I’m flaring, my back aches, almost to the point where I can’t walk and this back ache can sometimes serve as a warning that  I need to take better care of myself in the hopes to reduce a flare and I’ll look at managing events that I know will put unnecessary pressure on me and increase the likelihood of a flare. I can also help manage the possibility of a flare better by adapting my diet to bland foods, however, no matter what preparation I do, I can still flare and the unpredictability of UC is one of the hardest things to deal, particularly as being unwell can impact on my ability to work and be with my friends, which then has an impact on my mental health.

Rare Disease Photo Challenge

Throughout the month of February, I participated in the Rare Disease Photo Challenge in the hopes to raise some much needed awareness of Primary Sclerosing Cholangitis and to show that not every illness is visible.

I realise I may have bored a lot of you senseless by taking part in this challenge, but it’s something that is important to me.

Not only was I able to help raise awareness about my rare disease, Primary Sclerosing Cholangitis, I was able to raise awareness about rare disease in general, and educate myself on other rare diseases that are out there.

A disease is classed as rare when it affects fewer than 1 in 2000 in Europe and there are over 6000 rare diseases in the world, 80% of those  have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative and 50% of rare diseases affect children, but no two people are affected the same.

Unfortunately, due to relatively common symptoms, a rare disease can be hidden, which often leads to misdiagnosis and delays in receiving treatment, which ultimately reduces a persons quality of life.

Throughout the challenge, others with a rare disease shared their journeys and experiences and inspired others who may be facing the diagnosis of a rare disease, or currently un-well with their disease that there is hope and that you can make the most of your life with whatever rare disease you may have, showing that the diagnosis does not control you, or define who you are. PSC certainly does not define who I am or how I live my life. Yes it is there, it is present, it does limit what I can do, but I acknowledge it and I do my god damn best to make sure it doesn’t control what I do with my life.

 

 

 

PSC Awareness Week 2016

Today marks the start of PSC awareness week (23rd-29th October).

PSC, short for Primary Sclerosing Cholangitis, is a disease primarily of the bile ducts, both inside and outside the liver (the ducts of the gallbladder and pancreas may also be involved) The walls of the bile ducts become inflamed (cholangitis). The inflammation causes scarring and hardening (fibrosis) that narrows the bile ducts. The bile is then unable to drain through the ducts accumulating in the liver causing damage to liver cells. Eventually, so much bile is accumulated, it seeps into the bloodstream. As a result of this long term cell damage the liver develops cirrhosis (hardening or fibrosis) and can lead to the need for a liver transplant.

I received my PSC diagnosis in 2010, via a letter written by my consultant, with very minimal information.  I was on one of my final nursing placements at this time and was distracted by the thought that I was 20years old with liver disease.  The ward manager recognised that I wasn’t myself, and so she took time out of her busy schedule to spend time with me and researched my condition.  We discovered that Elena Baltacha, a champion tennis player, had the same diagnosis as me and had the ability to live her life to the best of her ability.  She was diagnosed at 19 years old, a year younger than me, and it was such a relief.  We looked into her life and career and discovered that she was meticulous when it came to managing her condition, recognising the importance of ensuring she complied with her medication. Sadly Elena passed away on 4th May 2014 to liver cancer, but she continues to inspire me.

Through researching the condition, I came to learn that PSC is classed as a rare disease, and classed as an extra-intestinal manifestation of IBD. Research told me that around 2% of people with Ulcerative Colitis are affected by PSC.

It’s a condition that I often neglected due to symptoms of my Ulcerative Colitis being more problematic, however in 2015, I was met with the devastating news that my PSC was progressing and becoming more treatment resistive, despite my Colitis responding. I suffered terribly with exhaustion and pruritus, and had to take medication which I swear was wallpaper paste. Thankfully, a course of steroids and changing my colitis medication improved my liver function and after a year, it’s gone back to being it’s healthiest, but I’ve learned that I need to take care of my liver, just as I do my bowel.

Life with a chronic condition, (or two) comes with many emotions, but I strongly feel that I am in a position where I can raise awareness about PSC and learn more about how to manage it, just like I have done with my Ulcerative Colitis.

Sharing the Patient Experience.

On Tuesday 28th June 2016, Crohns and Colitis UK had a reception at the Scottish Parliament for the launch of a new initiative – “Scotland Leading the Way- a National Blueprint for Inflammatory Bowel Disease in Scotland”, which aims to improve services for the 26,000 people in Scotland living with Inflammatory Bowel Disease and I was honoured to be asked by the charity to share my patient experience and what the initiative will mean for patients like me.

The event was open to MSPs from across Scotland, sponsored by Clare Adamson, MSP for Motherwell and Wishaw and featured Dr Ian Arnott from the Gastrointestinal Unit Western General Hospital, NHS Lothian, who introduced the document and Dr Gregor Smith, Deputy Chief Medical Officer for Scotland.

I’m delighted that Scotland is becoming the pioneer of IBD care and is leading the way with a National Blueprint, and I am thrilled that patients, the Government and Crohn’s and Colitis UK have come together to formulate a national plan to ensure that everybody receives the best possible care and to witness an extra-ordinary amount of MSPs support the Blueprint was overwhelming.

Over the years, I have had very different experiences of in-patient care, particularly the admission process. Firstly, and most commonly, I have been admitted via A&E, where I have often waited in excess of 6hours before the decision has been made to admit me to hospital. Thereafter, I have been admitted to a ward, which is not the one my consultant or IBD Nurse work on for 24-48hours, before I get admitted to the medical ward and start receiving the right care and treatment that is required to treat my IBD flare.

Secondly, and an experience that I hope will continue should I require a further admission, I have been able to contact my IBD Nurse with my symptoms, who, in a matter of hours, speaks with my consultant and arranges for my admission. In this instance, I have by-passed A&E and have gone straight to the medical ward where I don’t even get to introduce myself before I am whisked into my bed for the foreseeable future. This process makes my hospital stay less scary as I know I am being seen by the right people and the right time (although ideally I don’t want this to happen and I would’ve self managed my condition better, but there are times when my body just says no).

As an out-patient, I have appointments every 6-12 months and 9 out of 10 times, these are either rescheduled or cancelled. As an out-patient. I often don’t need these appointments as I am either in remission, or managing my condition and, after hearing about the possibility of phone reviews or e-mail consultations I was delighted. The nurse in me was saying that this would be a better use of time for the consultant and the patient in me was saying that it would keep me out of a hospital. There’s just this smell that even when attending out-patient appointments you can’t avoid.

Another reason that I am quite passionate about the National Blueprint being launched is the co-development of a psychological service.

I have been chronically ill since I was 7, at a time when I should have been having sleepovers with my friends, or going out on trips to country parks and zoos. But I wasn’t. As much as my parents tried to give me a “normal life”, I was terrified of having an accident, so I wouldn’t go. Over time the invites stopped and I became isolated from my friends. I was teased because “I didn’t look sick”. My confidence dipped as did my self-esteem and I’ve suffered periods of low mood.

I am delighted that steps are being taken to not only reduce the stigma of mental health with a chronic physical condition, but to improve the access to mental health services, particularly within the IBD service.

I’ve seen many developments over the past 19 years in the way care is being delivered and I look forward to seeing what the next 19 bring.

Volunteering and Me

It’s Volunteers week!

Volunteers’ Week is an annual event which takes place at the start of June and it celebrates the contribution made by millions of volunteers across the UK.

In 2012, I received a letter from Crohns and Colitis UK inviting me along to a meeting about setting up a support group within Ayrshire and Arran.

It was a letter that I swithered about for a few weeks and very nearly binned, however after talking to close friends and family, I was encouraged to go along.  I had previously avoided going to support meetings as I felt that I was too young to go along and felt that they weren’t for me, however I was now 15 years into my Ulcerative Colitis diagnosis and it was finally at a point, at 22 years old, to finally accept the impact that Ulcerative Colitis had, not only on myself, but my family and friends too.  As a kid growing up with IBD, in a time before Facebook and Twitter, there wasn’t the awareness of IBD that there is today and I don’t want anyone to feel lonely, unsure of themselves or ashamed of who they are, or to feel that they had no support in the world.

I started out as the e-mail and social media responder, (I was never off my phone, so it was the perfect excuse for remaining glued to it!) and at the age of 24, I made the decision to take on the role of co-ordinator and link volunteer.

Our events vary from fundraisers, coffee mornings to information sessions and in 2013, I started talking about my life with IBD at one of our events and I haven’t stopped since. Sharing my experience of IBD, sharing some of the most personal and degrading moments that have happened over the years has been one of the toughest, yet most rewarding things I have ever done.  If I’m able to reach out to one person affected by IBD and help them come to terms with their diagnosis, then it is worth it. And it has its perks for me too, it’s helped me to be more open with my friends, which contributes to me being able to self manage my Ulcerative Colitis.

Being involved with Crohn’s and Colitis UK has opened up my eyes and new doors for me. Due to the changing dynamics within the group and various skill set of the Ayrshire and Arran group, I’ve been able to get involved with other projects and campaigns, such as Alliance Scotlands: “My Skills, My Strength, My Work”.

I took on another volunteering job in 2014 at The Gaiety Theatre, Ayr. I love being within the theatre and seeing how a show can come together and I love the sense of community it has brought to Ayrshire. Being able to see firsthand that variety of talent that Ayrshire has is another perk and it led to me getting involved in amateur dramatics, something I hadn’t done since school.

Volunteering is an experience like no other and I can, hand on my heart say, it’s been the best decision I have ever made and it’s helped me be “me” again.

Self Management.

The theme of this year’s Self Management Awards held by The Alliance (Scotland)was inspiration and I was honoured to be asked along to speak about, not only my life with two chronic conditions (Ulcerative Coltis and Primary Sclerosing Cholangitis), but also about what inspires me to self manage.

There are two people that inspired me to self manage, Elena Baltacha and my brother.

I received my PSC diagnosis via a letter written by my consultant, with very minimal information.  I was on one of my final nursing placements at this time and was distracted by the thought that I was 20years old with liver disease.  The ward manager recognised that I wasn’t myself, and so she took time out of her busy schedule to spend time with me and researched my condition.  We discovered that Elena Baltacha, this champion tennis player, had the same diagnosis as me and had the ability to live her life to the best of her ability.  She was diagnosed at 19 years old, a year younger than me, and it was such a relief.  We looked into her life and career and discovered that she was meticulous when it came to managing her condition, recognising the importance of ensuring she complied with her medication. Sadly Elena passed away on 4th May 2014 to liver cancer, but she continues to inspire me.

2010 was also the year that my brother sustained a serious head injury.  Over the festive period, my parents and I travelled up to a specialist unit and I saw for the first time what it was like to have a family member in hospital and the devastation that could bring.  Our whole world was turned upside down and I didn’t know what I could do to make things better for my parents, except do my best to comfort them and to do my best not to allow the stress of the situation cause me to be unwell, and so I contacted my IBD nurse at the first sign of a flare, instead of going via my GP.  for me, that was the first step to taking ownership over my health and to self manage.

It’s important to recognise that self management is different for everyone. The key to my self management is communication.  By talking to my friends, family, colleagues and my care team about my health, we can come up with solutions together for when I’m unwell.  It took a long time for me to be comfortable with my health, particularly due to the nature of Ulcerative Colitis, but I’m no longer ashamed or embarrassed to let others know that I’m not well and will need to cancel plans. We all realise that rest is one of the best things for me to help me feel better the next day and to prevent either of my conditions from deteriorating further.

Sometimes the bad news is good news.

I’ve not kept it secret that this year has been difficult in terms of my liver disease. Since April, my blood results have been showing signs that something hasn’t quite been right, yet on the whole, I’ve felt “ok”. It’s frustrating not knowing what’s going on in your own body and tiresome constantly attending hospital for either blood tests, or further appointments, but only to be told, “your blood results are worse, come back next week for more”.

August was possibly the hardest month for me. Things got really bad with my blood results and so I was sent for an urgent liver biopsy and MRCP (Magnetic resonance cholangiopancreatography), but before I went for these, my consultant sat down with me and my parents and advised that there was a possibility that I might have Non-Hodgkin Lymphoma. Now, I’m well aware that my risk of developing cancer is greater than the general public due to a combination of my conditions and medications, but having my doctor say the words makes it quite a scary place to be. I always knew that when he said those words, it was to keep me in the loop, but it also made it quite real how horrendous and unfair a life with a chronic illness can be. I must stress, my consultant made it clear that it was only a slight possibility, but no matter how slight it was, my head automatically thought of the worst possible outcome and so I researched Lymphoma and found a strange comfort in that I didn’t meet the most common sign, painless swelling in a lymph node. I then started looking into alternative reasons; autoimmune hepatitis, diabetes, wilson’s disease, gilbert’s disease, whatever the internet showed me could be a reason for my abnormal blood results, I looked into and I found myself ticking every box for most conditions associated with the liver.

What I found most surprising was, none of them scared me. I researched and studied what I could, but strangely, I found it almost relaxing, that it could be something other than cancer, it might be a progression of my existing liver disease, it could be something new, but I knew, deep down, that I would be able to face whatever came next. After all, I’ve spent 18years of my life living with chronic illness, what’s another?

And then the phone call came. “It’s your consultants secretary here, he would like to see you”. Oh god, I thought, there’s something else, why on earth would he phone me to arrange an appointment? Thankfully she continued with, “he’s written a letter with your results, shall I read it out?”

My liver biopsy shows a progression of my Primary Sclerosing Cholangitis and increased inflammation. Not cancer, not Autoimmune hepatitis, not any of the other conditions I had researched, not good news, but yet, not bad news. A progression of my already existing condition. Bad news, but yet, good news.

And then the phone call came. “It’s your consultants secretary here, he would like to see you”. Oh god, I thought, there’s something else, why on earth would he phone me to arrange an appointment?

I met with my consultant and was advised that my liver biopsy shows a progression of my Primary Sclerosing Cholangitis and increased inflammation. Not cancer, not Autoimmune hepatitis, not any of the other conditions I had researched, not good news, but yet, not bad news.

A progression of my already existing condition. Bad news, but yet, good news.

“But You’re Young”

Yes, I am well aware that I am 25 years old, but that means nothing when it comes to health, or rather it should mean nothing when it comes to health, but it does:

“You’re too young to have breast cancer”,

” You’re too young to have cervical cancer”,

“You’re too young to be this tired”,

“You’re young, you can bounce back”,

“You’re young; a late night shouldn’t bother you”

People often talk about age discrimination and immediately your thought process goes to the elderly, and yes, that’s very much prevalent, but it exists for younger people too.

I am 25 years old and I have liver disease, most people think I spent my teenage years binge drinking.

I have been steroid dependant since 2008 which has resulted in my bones thinning (osteopenia).

I have extreme fatigue and I can’t brush my teeth without exhausting myself, so how the hell am I meant to handle a late night out?

A colleague’s daughter is battling breast cancer after being told at the age of 27 she was “too young”, despite her concerns over finding a lump and might I add, she fights it so bravely and is always smiling. She also has a FB page detailing her journey (https://www.facebook.com/pages/My-Breast-cancer-journey-And-I-will-kick-its-ass/585433738253904?fref=ts).

There are endless stories in the paper of people under the age of 25 being diagnosed with cervical cancer, because they are “too young” for a smear test.

It infuriates me that there is an expectation on younger people to be “fit and healthy”.

What do we have to do to show the world that we are susceptible to cancers, liver disease, bowel disease, brittle bones and so on and so forth as our elderly counterparts?

Be PSC Aware

21^st-27^th June is PSC awareness week.

But what is PSC I hear you ask?  PSC is the abbreviation for Primary Sclerosing Cholangitis: a disease primarily of the bile ducts, both inside and outside the liver (the ducts of the gallbladder and pancreas may also be involved) The walls of the bile ducts become inflamed (cholangitis). The inflammation causes scarring and hardening (fibrosis) that narrows the bile ducts. The bile is then unable to drain through the ducts accumulating in the liver causing damage to liver cells. Eventually, so much bile is accumulated, it seeps into the bloodstream. As a result of this long term cell damage the liver develops cirrhosis (hardening or fibrosis).

The exact cause of PSC is unknown, but in my case, it is related to Ulcerative Colitis.

Research suggests that there may be a common cause for both conditions existing OR the inflamed colon allows toxins or infections to be absorbed into the body, causing the bile duct inflammation.

Life with PSC.

I was diagnosed with PSC in 2010 and up until March 2015, it was relatively quiet.

I require to have blood tests every 6 weeks prior to receiving my infliximab and more often than not, my Liver Function Tests (LFTs) are abnormal and despite adjusting doses of medication, discontinuing medications etc, we just can seem to get my blood results to stabilise.

It has been 5weeks since my last infusion and my Ulcerative Colitis is starting to flare and it’s like my body is fighting with itself.

I’ve never had both conditions flare at the same time and it’s often difficult to work out which condition is causing me grief, but it is a vicious cycle and one that I hope I can break soon.