Saturday, 10 June 2017

Waiting | Poem

I’m lying in bed waiting for doom,
I know it will come sometime,
More than likely soon,
I don’t know when it’s coming or when it will arrive
But it’s on my disappointment that joy does thrive.
There’s a knock on the door ‘we’ve come to take you away!’
I sit in silence, what more can I say?

This was a poem I wrote when I was around 15 years old. Kinda depressing huh? It won a competition anyway... 

Wednesday, 7 June 2017

Do you know how many of your health issues are actually IBD related?

The list of extraintestinal manifestations of Inflammatory Bowel Disease is extensive. Those newly diagnosed in particular, could easily not realise which of their other conditions are actually related to their IBD.

I have been guilty multiple times of linking things to IBD when I have been unwell, which have turned out to be completely unrelated, and I should in fact have sought help for sooner. Equally, I have not linked things to IBD (or the medications I am taking to treat it) and been completely off the mark there too!
I like a list, and I feel this is the perfect time for numerous lists, for simplicity and clarity. Please remember I am not a doctor and this is by no means a complete list. I have no doubt some of you will spot something I have missed.

Primary symptoms of Inflammatory Bowel Disease:
Stomach cramps / spasms
Diarrhoea and / or constipation
Bloody stool
Decrease in appetite / Weight loss
Increased wind (which is actually a sign of the intestine being inflamed)

Secondary symptoms and other autoimmune conditions related to Inflammatory Bowel Disease:
Nutritional deficiencies
Skin tags
Anal fissures
Malabsorption / Malnutrition
Blood clots (including DVT)
Thinning / weakened bones
Joints (pain, swelling and inflammation)
·         Arthralgia
·         Peripheral Arthritis
·         Axial Arthritis / Spondylitis
·         Ankylosing Spondylitis
·         Aphthous ulcers
·         Canker sores
·         Herpetiform ulcers
·         Dental cavities
·         Periodontitis
·         Episcleritis
·         Scleritis
·         Uveitis / iritis
·         Keratopathy
·         Erhthema nodosum
·         Psoriasis
·         Pyoderma gangrenosum
·         Rosacea
·         Acrodermatitis enteropathica
·         Pyoderma vegetans
·         Vasculitis
·         Vitiligo
·         Clubbing
·         Sweet’s syndrome
·         Eczema
·         Epidermolysis bullosa acquisita
·         Kidney stones
·         Enterovesical fistulas
·         Ureteral obstruction
·         Uric acid stones
·         Hydronephrosis
·         Hepatic Steatosis / Fatty Liver Disease
·         Cholelithiasis
·         Primary Sclerosing Cholangitis
·         Pericholangitis
·         Cryptogenic Cirrhosis
·         Autoimmune hepatitis
·         Gallstones
Rheumatoid arthritis

Side effects of medications include but are not limited to:
Joint pain
Thinning of the skin
Increases susceptibility to infection
Hair loss
Thinning / weakened bones
Increased risk of lymphoma and skin cancer

It’s always worth seeking advice from a GP if a new health issue occurs as even if these are IBD related, they can be treated with different medications.

I hope I made my point here that Inflammatory Bowel Disease is MUCH MORE than a disease only affecting the intestines..

Wednesday, 31 May 2017

Join me on The IBD & Ostomy Show, Thursday 8th of June

Exciting news! I will be on the IBD & Ostomy Support Show on Thursday 8th of June, talking all things IBD, ostomy, and of course #IBDSuperHeroes.

The show goes out LIVE on YouTube and Facebook on Thursday each week between 8 and 9pm, so let's hope they've got their bleeper ready! Essentially, it's a chat that YOU get to watch and interact with via a live chat tab on YouTube. If you would like to tune in to this week's show, visit the event page, click 'going' and then return by 8pm on Thursday and click the link in the event. Simples!

The topic will be 'other health issues related to IBD'. Ahead of the show, a poll is published for you to HAVE YOUR SAY on the topics being discussed, so if you'd like to do that, click here.

I was asked to do a quick introduction to me, so here it is...

Mine was not your typical story of being sick for a long time and having to fight for a diagnosis. For me, it all happened very quickly.

Excruciating pain, blood and diarrhoea came out of nowhere and saw me in bed, unable to move for two weeks. I slept and I went to the toilet and that was it. In those 2 weeks I lost 11lb. I went to A&E and was admitted and diagnosed on the same day. 

I have been fundraising for Crohn’s & Colitis charities and raising awareness of Inflammatory Bowel Disease for over 3 years, which led to a Pride of Britain Award in 2015. 

The current project that I run with follow J-poucher, Corinne Burns is #IBDSuperHeroes, focusing predominantly on finding a cure for IBD. 100% of donations are invested in to research via Cure Crohn’s & Colitis

You can find out all about #IBDSuperHeroes on the blog. Click around and meet the team, read other peoples stories, buy merchandise, see our mentions in the media and what we’ve been up to etc etc.

You can also visit my blog which includes contributions to Huffintgon Post UK and The Mighty. 

Saturday, 27 May 2017

In an indoor location write down three things for each of the following:

Sounds that you can hear;

The fridge, humming as it circulates the cold air to keep my fruit and vegetables crisp. Little does it know its main contents is cheese and pickle.

A dog barks in a garden not so far away. It barks often, never really sounding distresses or excited. Purely like its barking because it likes the sound of its own voice. His people should probably pay him more attention. I say him, because I assume, that only a male dog would want to demand attention in such a way. I know nothing about ‘him’, or his people. I do not know his breed, his colour, or what his favourite toy looks like. Again, I assume, like when you create a picture of a person in your mind whilst you listen to them on the radio, or read them in a book. He silences as I write about him, as though for today, he is happy that someone ‘heard’ his voice, and now he is done.

My Chihuahua is chewing a treat. I am pleased as it’s a fresh breath stick. I am not so pleased that this has to be done quite so loudly as I try to engage my brain in to ‘writing mode’. She opens her mouth to chew once she has ripped a piece off, and when she has swallowed, she licks for a while, as though trying to soften the edge where she has pulled it away before it was ready.

Textures that you can feel;

The woven fabric of the sofa is not that comfortable when you really stop to think about it. It feels dry, too dry almost, like I should be cracking open the E45 and giving it some TLC?

My legs are soft, yet slightly prickly. The hairs breaking through from the last epilation are thin, but when my hand flows over them in the wrong direction, they still have enough about them to make my fingertips tingle. My hand doesn’t go with quite so much ease it reaches the back of my knee where sweat has begun form from my bent leg.

My legs feel my hands run up and down them. The pressure differs from the palm of my hand sweeping gently to an increased pressure as one fingertip searches for the best route to induce the most tingling in it.

Odours that you can smell;

There are lilies in the corner of the room, that only began opening or day or two ago. Half are still yet to open so the scent is not yet overpowering. It drifts passed as the breeze creeps in through the crack in the door that is not intended, purely ‘fucked’.

The sofa is relatively new, and you can still smell the ‘newness’, which if we’re being honest, is not entirely pleasant, like the smell of new clothes that you always wash before wearing, and unlike a book which smells like adventure. Full of hidden secrets you’re yet to uncover.

There’s gammon in the oven, covered in a sticky honey glaze that I can’t wait to eat! I want to smell more of it, but the lilies take precedent in this room. 

Flavours that you can taste;

The aftertaste of coke that I can only assume no one really likes, which leads me to wondering why anyone ever drinks it. It’s flat which is how I like it, because it’s been left in the fridge overnight after a post-cinema McDonald’s trip.

If I concentrate, which I would really rather not, the faint taste of codeine lingers at the back of my throat, reminding me I am sick.

Objects that you can see;

The flowers in the corner smile at me. They know I appreciate them, but I will probably forget to give them fresh water when they need it. They’re the classic pink and white, with the brown and often transferred pollen. They’re very big, because my boyfriend likes to but the best, and they stand out against the wall which is supposedly ‘sand’ coloured. How can you call a colour sand, without specifying said sands location? And not one grain of sand, if inspected under a microscope would be identical to another. A myriad of colours and textures and sizes and shapes, quite disrespectfully – I think, shoved under the umbrella term for a colour, ‘sand’.

The leopard print curtains make me think that they’d probably be much better suited to a brothel. They’re not good quality. I bought them when I was buying everything else which meant my budget had to go a long way. They were cheap, so you can see through them, and often when I am watching the TV, I am distracted by the light outside.

I have a large, colourful, metal and glass gecko crawling up the wall. It’s not the only gecko crawling up the wall in the room but is by far the prettiest. She is supposed be in the garden on a fence, where the pink and green coloured glass in her abdomen catches the light. Her eyes are not glued on, but instead, encased in twisted wire which has been coiled around glass beads. She is beautiful, but has a look of not knowing it.

Friday, 19 May 2017

The importance of a Pizza Party

It’s been a great Friday for me!

Firstly, because it’s World IBD Day, so I’ve had the opportunity to shout about how important raising awareness is. Not only is it acceptable today more than any other day, I would even go as far as to say it is expected - welcomed! Of course, I delivered, with the same flare, style and enthusiasm as always – none, clumsy, but the enthusiasm I got nailed! 

So what is the second reason for my ‘great Friday’, I can hear you pondering. Well, today is also National Pizza Party Day!

If you want to be pedantic about it, which I don’t doubt some of you are, it’s actually an American National day, but I’m more than happy to jump on the bandwagon for most National food holidays!

If you want to see what I have been up to in terms of raising awareness today, head over to Huffington Post and The Mighty. I have been crazily sharing on social media and have spent the last few weeks designing awareness images and creating Thunderclaps etc. For those of you not in the know, Thunderclap is a nifty little site that allows you to create a short post (short enough for Twitter), and ask people to support your message with their own social media profiles, meaning that at a time and date you've specified, the message will go out on their social media. Neat huh?

This evening has been spent with my beloved, making pizzas with ready-made pizza dough (I know – I am ashamed, honest)! He knows it’s best to indulge me when I request things like ‘a pizza making party for two’. Who said romance was dead?

As I said, it’s been a great Friday! I feel like I have not only done well for the IBD community, but also suitably romanced my other half too. Productive wouldn’t you say?!

What do you mean, having him make his own dinner is not romance? YOU KNOW NOTHING!

Friday, 21 April 2017

Do you really know where your charitable donations go? A few figures

In March 2014 I began a project raising funds for the UK’s biggest Crohn’s and Colitis charity and after 21 months of constant fundraising, in December 2015 we had hit a grand total of £45,000!

I know what you’re thinking “That’s AMAZING” right? Of course I thought the same, until I began to look properly in to where those funds were invested by the charity. For example, looking at the yearend accounts for 2015, I can see that a mere 10% of total donations were invested in to research, and a whopping 39% on staff costs...

My math tells me that if I am to work out by the 2015 accounts percentages, where that £45,000 I worked so hard to raise went it looks like this.
£4,500 went to research
£17,550 went to staff costs

Now you see, it took 1 year and 9 months to raise that £45,000.

Current vacancies at Crohn’s and Colitis UK:
Publications Information manager: £40,000 per annum 
We couldn't even keep up with paying this one staff member

But on the bright side, in those 21 months we did raise enough money to pay this guy for 12 months:
Management accountant: £36,000 - £38,000 per annum
So all is not lost (sarcasm).

If I had known then, what I know now, that whole £45,000 would have gone to research via Cure Crohn’s & Colitis, but alas, I did not look, and I did not know, and I can honestly say that I am gutted about that!

I have since learnt my lesson, and along with Corinne Burns started fundraising project IBDSuperHeroes in January 2016. Our tag line is ‘fighting to cure Crohn’s and Colitis’, and this time we actually are!

Our total is not as grand as the previous project, and currently stands at £11,584, but every single penny of that has gone, or will go to research to ultimately find a cure for Inflammatory Bowel Disease. It has taken us just over 15 months to reach this goal.

The previous project, which is still being run by a few of the ladies I worked with, has now raised a fabulous £61,674, and that has take just over 3 years (37 months), meaning (based on 2015 percentages) around £6,167 of that goes to research and £24,052 on staff costs, and as we’re aware from above, that isn’t even going to a cover ONE persons annual salary...

I work in Marketing, so I completely understand the need to spend money to make money. Without spending money on marketing staff / materials and PR people to get you in the media and event organisers to get your walks in front of the relevant audience, you simply will not become well known enough to be 'raking in' donations. Essentially, these are businesses as much as they are a charity.

Cure Crohn's and Colitis do not pay staff. Everyone that works on their behalf, from the guy that built the website to the lady that does the year-end accounts, does so for free. There is no hefty salary for the big CEO and no marketing budget for a fancy website and ads in magazines, because they want each penny to make a real difference to the lives of those with Crohn's and Colitis. The majority of Cure Crohn's and Colitis' volunteers have been impacted in some way by IBD themselves, so they volunteer their time because they BELIEVE in the cause. 

I guess it’s all down to personal preference, where you want your hard earned money to go. Personally, I want my time and effort to be invested in to research for a cure.

I urge anyone looking to fundraise for Crohn’s Disease and Ulcerative Colitis to PLEASE take some time to think about where your ultimate goal lies and ensure that you are fundraising for a charity which aligns with them.

Check out Cure Crohn's and Colitis:

Over and out.

Monday, 3 April 2017

Why would anyone NOT want a pig??

Earlier today, whilst making my regular "it's a cute creature" squealy noises during a video of a teeny pig, I was asked
"Why would anyone want a pig?"

Well I just wanted to pop along and ask the question

Why would anyone not want a pig??

Walks on rainy days...
 A helping hand in the garden...
Warm your cups ready for a brew...
Create Jacuzzi whirlpools...
 Constant fertiliser refills...
More rainy day company...
 Purely, just because...
Warms your hat before you go out in the cold...
Ice cream eating companion during summer...
Can't live alone, therefore a need for more pigs...
Thank you piggies. Point proven I think.

Twitter cosmetics | One less egg this Easter

If you joined Twitter over the last 7 years, you're default Twitter profile picture will have been an egg. Twitter says "This was a playful way to reference how eggs hatch into birds that send all the Tweets you see on Twitter!"
Twitter feels that by changing it's default image, it will prompt more self expression.

"How?" I hear you questioning. Well to be honest, I haven't the foggiest idea.

"We noticed that some people kept the egg default profile photo because they thought it was fun and cute."
Errm? If I was looking for 'cute', it would surely be a piggy in wellies?

Twitter also thinks that due to internet trolls not going to the effort of personalising accounts, the egg has become an icon that users associate with trolling and spam, which is unfair to new users who haven't yet personalised their profile.

In my mind, an un-personalised profile will have the same association, no matter what the default image is.

Over the years, Twitter has had many default profile images.
Apparently a lot of thought went in to the direction of the new default image.

Will it encourage more people to update their image? Probably not.

Will a new and more human default image make users less likely to suspect the other user is a troll? Probably not.

Does Twitter feel good because they added something shiny and new for people to talk about? Probably yes.

Well good for you Twitter! When I feel life is lacking, I go buy me shiny new shoes.
You may now stare in awe at your shiny new default.
Now, what was I doing? 
Oh, yeah.

Saturday, 1 April 2017

Growing human tendons on an advanced robotic hand

This apparently is NOT NEW news, but I only came across this a few days ago!

Researchers first created a robot hand that is so accurate it has almost the same dexterity as a human hand. This is a major leap for prosthetics, and the motion capabilities of this hand have never been seen before.

Researchers put the hand through a laser scanner and then 3D printed artificial bones to match, they plan to then grow human tendons and tissue on the robot hand!

Currently, in the event of amputation of the hand patients currently have one of 3 options available to them:
Hand replantation: This is only a viable option if the severed hand is professionally cared for immediately after the accident and the tissue is healthy.
This procedure is carried out of if the hand can function without pain. The goal would be to give the patient back as much function as possible.
Amputation: Required if the tissues are too damaged and the hand cannot be replanted. A cosmetic or prosthetic hand may be offered to improve the cosmetic appearance and function of the hand.
Hand transplantation: If a hand replantation is not an option, surgeons can offer the patient a hand transplantation. This would involve a donor hand being transplanted. An operation like this requires a team of up to 20 surgeons who connect the arteries, veins, tendons and bones. Immunosuppressants are needed to prevent rejection of the donor hand by the patient’s body.

The new prosthetics hand would mean people could have an entirely new hand, human skin and all, if their hand were to be lost in an accident.

Friday, 31 March 2017

Nutrition and Proteins

I made the decision to do some studying in my spare time and wanted to learn a little bit more about nutrition. In part, because I have Inflammatory bowel disease but also because it’s always going to be useful knowledge to have. I thought I was enrolling on a course that was going to talk about proteins from a health perspective. I soon realised I had signed up to study science. I enjoyed biology at secondary school and still have an interest in it now, but I have to admit that reading in depth about molecular structures had me baffled and I found myself repeatedly reading the same parts in an effort to understand them. Chemistry always was my least favourite science.
I am looking specifically at the role of protein in the diet from the perspective of a chronic illnesses sufferer; I can’t help it!

Protein comes from the Greek word protos, which means “first” or “primary,” reflecting the body’s fundamental need for this nutrient.

Proteins form an integral part of the components of all living cells and a typical cell in the human body contains 18% protein, though some cell types such as muscle cells, contain much more. Some proteins have a largely structural role in the body, forming tendons and hair, others are produced in and then released from cells and function as enzymes and hormones.

If insufficient protein is present in the diet for the body's needs then it starts to break down its own proteins. Since muscles contain large amounts of protein, the result of a low-protein diet is muscle-wasting. People with a poor appetite, perhaps due to some underlying medical condition may also be short of protein, and muscle weakness is common in those.

Extra dietary protein is needed by people who are suffering from injury, infection, burns and cancer, as all of these conditions increase the rate of loss of protein from the body. The upper safe limit of protein intake is probably around 1.5 g per kg of body mass per day. Higher intakes may cause loss of minerals from the bones which can then result in fractures.

Nutrition is also a critical factor in the wound healing process, with adequate protein intake essential to the successful healing of a wound. Patients with both chronic and acute wounds, such as postsurgical wounds or pressure ulcers require an increased amount of protein to ensure complete and timely healing. The wound healing process makes protein loss worse as the body can lose up to 100 milligrams of protein per day due to exudation, or fluid leakage from the affected area.

Proteins also play structural roles, as the contractile proteins actin and myosin found in cardiac, skeletal, and smooth muscle and as the fibrous proteins collagen, elastin, and keratin. During the proliferative phase of wound repair, collagen deposition is crucial to increase the wound’s tensile strength. 40% of the body’s protein occurs in skeletal muscle—the major component of lean body mass, the metabolically active tissues of the body. Lean body mass declines with age and critical illness, significantly compromising the body’s ability to carry out all the necessary functions of protein.

Now, did we all learn the value of protein? Good!

Thursday, 30 March 2017

£20M a year cap on new NHS drugs

The National Institute for Health and Care Excellence (NICE) has announced plans to limit spending on new drugs to save money. NICE said the cap is needed due to the “significant financial challenge facing the NHS”.
The £20M a year cap will be introduced next month, but this new measure could see delays of up to three years before new drugs are made available to give NHS bosses the chance to try to renegotiate the price with drug firms.

Currently, drugs that are assessed as being cost-effective by NICE are automatically recommend for use in the NHS, then the health service has 90 days to start offering the drugs. This process assesses the cost versus the benefit of the drug on the basis of the impact to an individual, but does not take into account how many people may take the drug and therefore the total cost to the NHS.

Under the new plan, widely used drugs and expensive but effective drugs that breach the £20m a year threshold will face a secondary process. NHS England will be able to halt the 90-day deadline and then begin bartering with the manufacturer to try to get the price down. They will be able to apply for an extension of up to three years. During this period, NICE will have the power to allow restricted use to patients deemed most in need.

Twitter replies: More characters for your tweet content

*Hip hip* HOORAAAY!

The long awaited, 140 characters PLUS Twitter handle has finally arrived! We were promised this addition back in May 2016, along with the media in tweets such as images and GIF’s not using any of your character limit and the ability to Retweet and Quote yourself.

These changes rolled out in 2016, with the arrival of the option to Retweet and Quote your own tweets coming in to affect in June 2016, and the capacity to use media in tweets without losing any of your characters since September.

Starting today, when you reply to a tweet it will look like this.

And if you want to remove someone from the conversation, you simply click on the twitter handles after ‘Replying to’ and de-select the people you don’t want.  

Twitter says “It’s now easier to follow a conversation, so you can focus on what a discussion is about, and who is having it. Also, with all 140 characters for your replies, you have more room to participate in group conversations.”

Tuesday, 28 March 2017

The TWO most important factors of social media management

Don’t get me wrong, there are many important activities that you need to carry out if you are going to effectively implement social media as part of your marketing output. These activities need to be done confidently and accurately, or NOT AT ALL. There is nothing worse (for me at least), than seeing a company’s ‘half arsed’ social media marketing attempts.

Before deciding to embark on social media for your business, you need to consider whether you actually have the time to invest in to it, to do at the very least, these things two things PROPERLY.
Content Creation
You need to ensure that the content you are putting out is relevant and valuable to your target audience.
Take some time to research keywords for both your industry, and your target audience.
It should be common knowledge by now that the right type of social media activity can help with your SEO, so you need to consider which keywords and search terms you want to be found under. When including links to your website in posts, you need to use these regularly.
If you can identify the keywords and hashtags that your target audience use and search for, you can ensure that THEY FIND YOU, which is truly important of you’re not going to be investing time in finding and engaging with them yourself.
You also need to make sure that the tone of your output is right for each platform, as the chatty and light hearted posts that are suitable for the likes of Facebook, Twitter and Instagram are not what professional LinkedIn users want to see.

Firstly, you need to know when your target audience is active online and make sure you post at these times, ensuring optimum reach for your content.
Secondly, you need to know what type of content is engaging your audience and generating clicks. Facebook, Twitter, Instagram, LinkedIn and even Pinterest have internal analytics for business profiles and pages. You will need to view these regularly and after a few months, should be able to see clearly which posts are encouraging your target audience to engage with you. Google analytics includes a tab specifically for viewing the traffic to your site from social media. This is incredibly useful.

A full social media strategy should obviously include a lot more activity and would yield much more fruitful results in terms of generating leads, but if you’re looking to build brand awareness and increase your digital footprint, the above is a good place to start.

For a more comprehensive strategy you will need to:
Identify your target audience
- Who are they?
- Where are they?
Identify influencers of your target audience
- Who are they?
- Where are they?
Invest time in engagement
- With your target audience directly
- With influencers of your audience directly and indirectly
Build your audience

Wednesday, 15 March 2017

Managing IBD | A balanced guide to Inflammatory Bowel Disease book review

I didn’t have a particular expectation about the book. When reading the back, which claims it will offer a ‘holistic and positive guide’, I did wonder whether I would find it at all agreeable, but I began with an open mind. 

Contributions from Kay Greveson – IBD nurse and founder of IBD Passport and Sally Baker – therapist and author make for a good all-rounder. Travel, mental health and food (covered by the author, Jenna) are three of the common issues we face as IBD patients.

I decided not to go to Greece last year after discovering the ‘no flushing tissue’ issue. I am of course plagued by the question ‘to eat, or not to eat’, as well as being a little bit mental, so this book appears to have been written for me!

The introduction clearly states that this is not a medical facts resource, nor will you be finding statistics and insights in to IBD. Instead, it 'aims to provide a practical and balanced approach to help you live with Crohn’s Disease and Ulcerative Colitis’’

I have taken the executive decision to include the link to purchase the book HERE, as this blog is long and I am aware you may not reach the conclusion at the end…
I have a lot to say, and have made a conscious effort to showcase the type of knowledge you will gain from the book, without actually quoting the book too much and giving away valuable content that Jenna would like you to put your hand in your pocket and pay for.

Adjusting to life with IBD
Being diagnosed | Dealing with your diagnosis | Finding support | Mental health

We do actually begin with some facts and figures. I’m not complaining, I love a good statistic, but don’t let the intro fool you in to thinking that you’re not going to learn anything and this is purely some kind of spiritual journey!

Here you will learn about the causes of IBD and myths will dispelled. Trivial topics such as junk food and the MAP vaccine also get a little coverage.

Extra intestinal manifestations such as fatigue, joint pain, skin conditions ulcers and so on are highlighted, which I think is highly useful for those newly diagnosed or only just exploring the world of IBD as these could be symptoms that they’ve experienced but not linked to Inflammatory Bowel Disease. This could be a complete revelation!

I am guilty of both linking things to IBD when I have been unwell which have turned out to be completely unrelated and I should have sought help for sooner, but on the other end of the spectrum, I have not linked things to IBD and been completely off the mark there too. Regardless, it’s always worth seeking advice from a GP if a new health issue occurs as even if these are IBD related, they can be treated with different medications.

Jenna mentions 'self-care methods', now she is not saying ‘you’re not looking after yourself’. This section may reveal a few things that you could be doing to aid your health in general, that may not have been mentioned by your healthcare team so you may not have considered.

Self-care IS important regardless of whether you suffer a health condition or not. The practice of mindfulness and considering what you put in to your body is something that all people should consider, not just sick people.

Input from IBD nurse Kath details some of procedures you may encounter as part of your IBD journey, especially in the early stages when disease activity is being determined. It also includes a labelled diagram of the lower part of your digestive system – which I enjoy. I love biology, and let’s be honest, it’s useful to know what is where when reading what the medical professionals will be sticking where during the described procedures; from MRI’s and endoscopies to bloods and faecal calprotectin. A brief introduction to the medications frequently offered is also included.

Jenna shares her (pretty common) story which highlights the unpredictability of IBD, in which one day she was well and rejoicing, only to be in hospital undergoing surgery 3 days later.

“I felt helpless, because I had believed everything I has been doing was enough. It also taught me a valuable lesson – sometimes we can just be unlucky and things are out of control”

A little info is included about the common surgeries used to treat IBD, including: Strictureplasty, Jpouch, resection, ostomies and Fistulotomy.

I’d just like to include a quick link here which includes other methods of treating a fistula: Seton, Advancement flap, Bioprosthetic plug, LIFT, Firbrin glue.

Understanding potential triggers includes the opinions of other sufferers, but Jenna does point out that some of these, such as the weather are not backed scientifically.

Seeing my own Facebook ‘on this day’ posts from previous years does often show that I too seem to have been struggling at the same time of year for some time. This may be purely coincidental of course, but I wouldn’t like to say I am certain either way. 

Whilst they may seem like ‘old hat’ to those diagnosed some time ago, the inclusion of tips on attending appointments and questions that could be useful, serves as a welcome reminder. Sometimes it’s the basic things that we know are important, we just sometimes forget. We can blame the brain fog if you like?

Jenna talks about being strangely excited to finally receive a diagnosis after feeling like she wasn’t being taken seriously for such a long time. This is a common story amongst IBDers, after years of pain and misdiagnosis.

This is something I remember reading in my first ever Crohn’s and Colitis information booklet during my hospital stay when I was initially diagnosed. It said that one of the common reactions to diagnosis is relief, because now there is a diagnosis, there can be an efficient treatment plan. Personally I found this book misleading (in my case specifically), as it hinted that people with IBD generally go back to living a normal life with the right medication. I was happy to have been diagnosed and happy that everything was going to be OK. To be honest I wish I hadn’t read that booklet as I had then believed that I was going to be OK and that I was going to be better. It was only a few days later when the IV hydrocortisone hadn’t worked that I was taken for emergency surgery to remove my colon and have a colostomy bag. I had never seen, nor heard of one, so this conjured up some pretty traumatic images in my mind about what it would be and look like. Had the booklet been a little blunter, I may have felt better prepared. Obviously I understand that jumping straight in with a ‘worst case scenario’ is not ideally what you want to face straight after diagnosis but some preparation for what could happen, pretty early on is important.

Jenna does say that she naively assumed that she would get better quickly and that all the dietary restrictions she had tried in the past would no longer be needed. Ultimately it took about 5 months to get on medication, and it didn’t really hit her until then.

“I remember crying on the way home as it finally hit me how serious the condition was. Over the years I have tried to get the balance right between knowledgeable and not researching for hours on end. I am honest enough to admit, it’s not always a balance I get right.”

I don’t think you can have too much knowledge. I obviously a run a support group and have a passion for raising awareness so feel I need to have facts, and figures if I am to educate anyone. I feel I need to know as much as possible so that I can answer people’s questions adequately. There are still times that I come across something I know very little about, which leads me to search the group for any other mentions so that I can refer them on but it also makes me hungry to know more about it. I follow the post to learn from personal experiences and I head off to search reputable sources and learn myself.

I know from seeing others posts that not everyone is mentally equipped to deal with ‘What’s the worst case scenario here?”. Anxiety is something that can completely take over someone’s thought process, and it’s common with IBD, meaning that sometimes these worst case scenarios build from being what should be thought of as exactly that, becomes something much more definitive. It may be something that isn’t anywhere near being on the agenda right now, but anxiety is a condition that may as well just be defined as ‘over thinking disease’ and all of those “What ifs”, become much more than that.

Jenna shares tips on starting the conversation about IBD, from explaining initially that you may not be too comfortable actually going in to it as it’s a little embarrassing and goes on to include the different aspects of your life that it may affect, such as socialising.

Don’t forget that you do not have to step out of your comfort zone to please other people, it’s completely personal, but those closest to you will need to be told things if you expect them to be patient and understanding.

I raise awareness. I post personal health matters publicly on Facebook and urge people to share them far and wide, but I do not like face to face conversations about them. During one on one conversations, I’m more likely to joke about it than share anything of any real importance. I don’t want to sit on a bus next to a stranger and start talking about it, yet I claim I want to raise awareness? To be clear, I very much DO want to raise awareness and educate the masses, but even I, am only going to do that in a way that I feel comfortable with, which is not face to face.

Jenna also suggests writing it down, build a journal which you can later share with family and friends if you feel comfortable doing so, but she also urges you to be patient. Large, life impacting changes can affect relationships, sometimes simply because you cannot do what you used to be able do. Be it picnics, or sometimes during a bad flare, being any distance from home.

My partner knows that he has a limited options when it comes to booking seats at the cinema. I need to be near an aisle so I can escape if needed without feeling stupid moving a row of people, and he needs to be in an area of greater leg room as he’s a very long huam. If those seats aren’t available, we just won’t go that day.
And… Wow, a London journey before Christmas – a few re-routes meant no toilet stops for me! For well over 90 minutes, and whilst I was pretty sure I could hold it long enough not to shit my pants, the pain when holding it was bad. So there I am – an angry passenger. He’s mad with me because I am suddenly mad about everything. I am mad about life, this disease, that sometimes, all of sudden there can be so much out of your control that you’re shouting at you’re other half, that you love very much and don’t actually want to upset, purely because he spoke to you and you don’t want to have a fucking conversation right now.
Seconds after the toilet stop, and the instant relief, suddenly happy again, and now a rather sheepish and apologetic passenger.

Jenna points out that whilst it’s easy to be resentful when loved ones appear to be unsupportive, it can be a huge change for them too, especially when they have to sit back and watch you suffer and can’t help.

I find this very prominent as my partner is not a very emotional character, in fact he has a distinct lack of emotion, and to be honest that’s one of the things that I initially liked about him. I’d spent a fair amount of time just enjoying my own company, not looking to be in any form of relationship because I feel a massive amount of guilt, and in my opinion have far too often had to look in to the sad eyes of people like my mum that care about me, sat at my bedside, upset that they can only stand back and watch whilst I struggle to operate and recover, and there is nothing that they can say, and I am just…. angry. A few months ago, when I was frustrated with something (common occurrence for me), I asked him, “Do you ever actually feel frustrated about anything?”, and his reply was “Yes, when you’re sick and I can’t help” – hurts a bit that. And whilst that is probably one of the most emotional and honest things he is ever going to say me, that makes me feel guilty, and my initial thought was purely “Shit”.

“Be realistic, like any major life change, there will always be people who are supportive and people that will not. IBD often makes it clear to us who are really confidantes are.”

I have written the very same, just a much longer version in a previous blog. Consider it like ‘separating the wheat from the chaff’.

During the Support networks outside friends and family, I am TUTTING very loudly…

Outside support networks can be extremely invaluable in helping you through your life with IBD. Sometimes it’s just enough to know that we’re not alone in what we’re going through”
Agreed Jenna!

Jenna mentions UK charities and Facebook groups, including her own; Healthy Living with IBD (find and connect with other people interesting in living a healthy lifestyle with IBD.)

This is my cue to interrupt Jenna’s info with the addition of
UK charity, Cure Crohn’s and Colitis, purely focused on funding research to find a cure for Crohn’s Disease and Ulcerative Colitis. 100% of donations are invested in to medical research. No money is taken from donations to pay staff as everyone is voluntary and works for Cure Crohn’s and Colitis because they believe in the cause and want to find a cure.
And of course, #IBDSuperHeroes Facebook group, which fundraises for Cure Crohn’s and Colitis and has Social media accounts on Facebook, Twitter, Instagram, Google+, Pinterest and Tumblr to raise awareness and promote fundraising activities.

“Understanding your medical team. It is important to get the most out of your treatment and services.”
Jenna covers all of the medical professionals that you should come in to contact with during your IBD journey, from your GP to your consultant, and even touches upon addition optional therapies.

I think it probably does depend on your area and your specific team, for example my GP is actually useless. 7 appointments in a row and I didn’t see the same person once, meaning that you are forever explaining your issues and symptoms again each time, plus what each GP / Practitioner before them has said and given you. My first port of call is always my IBD nurse, but they are so thin on the ground that that I usually wait 24 – 72 hours for a call back or email response, but in non-emergencies, she is a very useful woman to have.

IBD and Mental health is a section I am very pleased to see included as there’s often very little discussion about the emotional side, especially from the medical team.
Jenna includes some interesting key stats such as
Vitamin B12 deficiency is common in IBD patients and is linked to anxiety.
Anxiety is actually a symptom of B12 deficiency, which is pretty common in IBD due to the intestine not being able to absorb it properly thorough the ileum (the part of the intestine which connects the small intestine to the large).

For info on Anxiety, please do pop along and take a look at Mind or Anxiety UK

Jenna has experienced anxiety herself which she talks a little about, and mentions that the side effects of medications are a big trigger for her.

Some side effects from certain medications such as Prednisone, can actually make us ugly, which is depressing. I know from very recent experience that feeling ugly can have a massive impact on wellbeing - see recent blog BEING FUCK UGLY IS A PERFECTLY ACCEPTABLE REASON TO BEIRRATIONAL AND SAD

Prednisone, a very commonly used steroid for IBD symptoms causes: Greasy skin, acne, greasy hair (I could wash mine at night and wake up looking like someone had attacked me with a chip pan during my slumber), excess hair growth on your face – which is BIG AND ROUND (see moonface), and hair loss. Yes, there’s less hair on top of your big round head but more all over your body, which is not a look many can pull off!
Weight gain, insomnia, hunger and mood swings, all equate to one pretty ugly and extra tired looking thing - that vaguely resembles a human being.
Steroids are a big cause of depression for me. I believe they make me clinically depressed, rather than just sad about the other side effects. I had planned to top myself at one point, which at the time I didn’t find at all scary, but instead a massive relief, and I was much happier with the killing myself plan than the ‘plodding on’ plan.. I thought it was due to the situation at the time but looking back, every time I have had steroids, I have felt depressed, and I don’t believe this has been due to me being ill, as I have been ill for much longer periods of time whilst taking other medications such as Azathioprine and never once considered offing myself, which seemed to be a common thought process when taking Prednisone. If you want to read more about it, then you can do so here.   

I have suffered major anxiety through living with IBD, from being scared to make plans, get in to a relationship, sometimes even scared to just be settled and be happy for fear that something is going to come along and cause spontaneous combustion of all that I have so carefully created – the best laid plans of mice and men.

“Indeed the erratic nature of the immune disease itself means that the logical and rational amongst us, like me, search desperately for patterns, threads, links, anything to find a reason for this often baffling disease.”

I know this is also me, my assumption is that it will be most IBDers at some point at some point or another in times of desperation.

Jenna also touches upon feeling guilt that it may in some way be something that you are doing wrong. I made this very point in my recent food blog here when I attempted to fight fatigue with food.

I would just like to quickly plug a free online CBT tool which has helped me in times of need. I actually find this through the Mind website. You can get an App, but I would recommend using a PC / laptop, as the app skips some of the bits I feel really helped the first time I did it. It helps with all aspect of anxiety such as ‘warpy thoughts’ and helps you understand where and how you can change these thought processes in to something less negative. Check out MoodGYM.

Anxiety is relatively new to me and is something that I have only suffered with during the last few years, partly due to IBD and partly due to a previous unhealthy relationship, so I always find mental health info interesting.

“It’s clearly an area where more medical service need to be directed. As I discussed in chapter 1, initial consolations after being diagnosed can lead to the patient being overwhelmed with information and having a variety of leaflets thrust in to their hands, but where’s the leaflet that tells us to how to cope with the associated emotions? The leaflet that gives us ways of not breaking down and staying strong. The leaflet that offers support groups and websites.”

Input from Sally Baker (Sally is a therapist who works specifically with the mind body connection).
Since many patients feel stress is a trigger for their IBD symptoms, it’s important to try and get a handle on emotions. Only 12% of IBD clinics offer mental health support.

I find Sally’s tips and insights really useful. You’ll have to read the book to see them, but here are a few links to Sally’s site. Please note, you’ll need to register to access the upcoming information links. It just requires your name, email and a username
Emotional Freedom Technique – you may have heard of this being referred to as ‘tapping’

These treatments are becoming more readily available by referral via the NHS so you may like to ask if this is a possibility. Mindfulness being explored as an anxiety treatment rather than medication, which is of course good news as we put enough in our bodies for the physical symptom treatment!

NICE also recognises the roles stress pays in IBD and has cited hypnotherapy as a possible treatment.

Mindfulness I think is something that should be practiced by everybody – being self-aware and being able to judge a situation for what it actually is rather than a heightened, and more stressful version of it can only be a positive!

Jenna also makes a few suggestions for Apps to improve Mindfulness - Calms & Headspace.

To be honest I found this bit a little weird, purely because Jenna writes about Sally rather than Sally writing this part, unless Sally wrote it in third person… but I am unsure. Hey, I am only here to review it! 

Food and supplements
Nutritional supplements | The role of food | Beneficial foods to add to your diet | Staying hydrated

Thanks to Jenna's knowledge of nutrition, this section introduces insights that many IBD patient may not already know or have even considered, mainly due to dieticians not being part of the standard IBD management team through the NHS. Many hospitals don’t have a dietician, and the ones that do often don't have the capacity to introduce one ‘as standard’, therefore unless a dietician is strictly necessary due to symptoms then you will probably never meet one.

Jenna talks about Probiotics and prebiotics, and Probiotic rich foods, of course ensuring she makes it clear that it’s not always possible to get the nutrients we need from food due to malabsorption which is often the case when flaring.

18 months ago when attending an IBD conference, it was confirmed that probiotics have not been scientifically proven to have any effect on inflammatory Bowel Disease, other than in Pouchitis. That’s not to say that probiotics won’t help you feel more healthy and ‘spritely’ in other ways.

Info on the different supplements available and what these are useful for is explained eloquently, including deficiencies in B12, Anaemia, Magnesium (and its ability to help you deal with stress and anxiety, get a good night’s rest and relax muscles), Turmeric, Fish oil, Vitamin D, Iron and Calcium (needed with steroid use to prevent osteoporosis). Jenna again share her experiences of supplements and gives you space to trial and error some of your own.

There’s been many articles lately about a lack of Vitamin D linked to relapse in Ulcerative Colitis patients.

Iron for me is a particular trouble causer. I am prescribed liquid iron as the tablet form, as for many IBDers can cause constipation or the squits. I know a lot of IBD sufferers actually have the B12 injections as it’s much better tolerated.

I spent two years with a stricture which meant that any form of insoluable fibre was out of the question. Eventually my stricture was so narrow that I could not drink water without being in agony so nutritional supplementation was a must.

The role of food in IBD is an often discussed (and disagreed upon) topic, but Jenna handles it well and introduces multiple diets that could possibly ease symptoms (under the supervision of a professional of course). These include:
Low residue
Fasting 5:2
Specific Carbohydrate Diet
Weight loss diets (Weight Watchers / Slimming World etc)

I’m sure at some time or another you have been, and if you haven’t yet you will be, advised to keep a food diary. There are so many Apps available that you can do this with that I would recommend downloading a few and trying them out for yourself. Wearables are very popular at the moment, and whilst these allow you to log the food you’re putting in, I have yet to find one that enables you to log what is coming out and when, which is important if you’re looking to identify some form of correlation between food and bowel movements.

Jenna chooses not to share her recipes from her blog in the book, other than a few simple recipes for drinks “since this book is about personal IBD journeys and there are no ‘quick fixes’ for this disease.”

Understanding food is a section full of information that IS useful and impartial, and I imagine useful in at least gaining a little understanding of how certain foods such as dairy and gluten effect the body, specifically the gut.
Fibre is a topic I think there’s a fair bit of misconception about. Strictures, scarring and active disease can cause a lot of pain, so gaining more understanding of what is likely to aggravate symptoms will again be useful to IBDers.

A couple of queries I had about juicing were also answered for me in this section, so thanks, and I may well be investing in a cold press juicer!

Staying hydrated with IBD is also covered and I cannot stress how important I think this is!

“Hydration needs to be done properly, so here are some good sources of hydration (and some you may wish to avoid.”

A recipe I swear by is below, but PLEASE NOTE that this one is specifically for people with a short bowel, so those that have undergone a resection. I always have this made up and waiting in the fridge if I am going out and wil be consuming alcohol and on hot days during the summer.
Electrolyte replacement solutions are available from supermarkets over the counter and are suitable for people with a whole digestive system and functioning bowel. Dioralyte is probably the brand you have heard of but there are much more cost effective versions in supermarkets too.
I actually watched a programme a few months ago (I can’t remember what it was), but this claimed that it was scientific fact that milk is actually slightly more efficient in rectifying dehydration than water, obviously this would only be suitable if you’re fine with dairy!

This food and supplement section contains so many lists – and this pleases me because I loooove a list! I’m so excited by them that I feel I must share these lists with you! Guess what form I will share them in!? That’s right, a list!
Beneficial vitamins / supplement list
Dietary approaches to IBD
Naturally gluten-free foods
Possible problematic foods
Insoluble fibre / soluble fibre
Good sources of hydration
Drinks that may affect symptoms

You would expect this to be a particularly educational and informative part of the book thanks to Jenna’s background in nutrition, and I don’t think you will let down.

Living life to the full with IBD
Travelling | Working | Exercising | Hospital visits | Socialising

Tips for travelling with IBD, from taking your own food to questions you may want to ask the hotel in advance.

Admittedly I am not much of a traveller so found the suggestions extremely useful, and can honestly say I would have considered barely any of them, especially things like may be being eligible for express check in!
Apparently there was a recent campaign, #FlyWithIBD which I somehow completely missed, which aims to raise awareness and get airlines to offer more support to IBD sufferers.

Last year when travelling to Ibiza, the airline was more than happy to allocate seats near the toilet for me.

If you’re anything like me (anally organised), you will have a travel file that you call upon when you’re looking to go away, because there’s nothing worse than being unprepared! The checklist for travelling with IBD will be a great addition to my file!

Jenna on working with IBD: “Sometimes it seems that living with IBD is a full-time job (albeit one with zero pay or benefits!).”
There are a couple of good tips included as well as Jenna’s own experience of working with IBD. More info on dealing with employers and the legalities of living with IBD, plus studying and school, can be found here

Exercise and IBD is briefly covered and offers tips and a little info on how exercise affects the gut, plus a few guidelines for socialising with IBD, covering mainly eating and drinking.
“I often think ruined social life should be added to the official symptom list of inflammatory bowel disease.”

I was actually accused of being bulimic once as I kept getting up to visit the toilet during a meal, and another time was told that my health (the ileostomy that I had at the time) was not appropriate conversation over a meal. I’m sure if it had been something non-bowel related such a broken leg (or fingernail), it would have been fine! I told her that it wasn’t appropriate for me having to get up and take a shit half way through the meal either but it is what it is.

I thoroughly enjoy Jenna’s account of healthcare in China. Some much needed humour is injected in to the book, and the talk of the minimal boundaries and ‘bedside manner’ from the health professionals there makes me want to visit China myself, just to have a hospital visit and a chat. Input from the IBD community is included and other IBD patients share their tips on how they manage hospital stays and what they take with them.

Other possible approaches
Alternative therapies | Dealing with a flare-up, a 24 hour self-care plan

Alternative therapies covered are: Acupuncture, Reiki and Reflexology. Evidence to support these as alternative therapies in IBD, plus Jenna adds her own experience.

A 24 hour self-care plan. I like this, I am unsure whether that’s because I always like to have a plan, but whatever the reason, I LIKE IT, and I WILL use it. The care plan includes your whole day mapped out and includes:
What to eat and drink
Relaxation time (including a breathing exercise)
Do eat / Don’t eat
Symptom log
Bristol stool chart (if you don’t know what it is, look it up. Poo of all shapes and sizes – riveting!)

I am so keen on having a plan that I fully intend to make myself an emergency kit, (like the one I have for the zombie apocalypse but with less ammo).

You can also use the following measures to determine the severity of your symptoms. After calculating your score you can then take appropriate action as the suggestions in the ’24 hour self-care plan’ are for mild disease activity only.

I think everyone should familiarise themselves with Harvey Bradshaw scale for Crohn’s Disease and the Simple clinical colitis activity index

Firstly I should state that I pride myself on being a ‘know it all’ so whilst I can’t claim to have learnt a lot from this book, I actually did really enjoyed reading it - more than I expected too if I’m being honest. Everything is simply put and easy to understand. It is not filled with medical jargon that you’re going to have to take to Google to understand!

I think the book will serve as a comfort to those newly diagnosed or those just coming to terms with their condition and willing to look in to what they’re dealing with more. I know I mentioned earlier that sometimes, even people that have suffered with IBD for years forget the basics, but they’re all here to remind you.

For years I stuck my head in the sand and had no intention of admitting to myself, nevermind anybody else that this was something that was actually going to affect my life dramatically and that I actually needed to deal with, regardless of the fact I’d already had surgery and was living a colon free, and not particularly ‘normal’ life.

Case studies from other sufferers as well as Jenna herself will go some way to reassuring IBD sufferers that they are far from alone on the journey.

It does exactly what it says on the tin (back page). It will give you some tips and insights in to ‘Managing IBD’.

One issue I did encounter is that because Jenna is not wanting this book to be full of facts and figures, there are often external sites that will which she links to pretty frequently. It’s a well known fact that we live in a digital world – had this been a blog it would have been one simple click away, but here there are times when you’d end up cross eyed attempting to type in the links to access the information. This is obviously necessary as the book would be considerably longer had she included the information, but I think it would definitely be worth Jenna publishing a page on her blog, allowing for a simple ‘click through’ to the sources linked to in the book.

I feel quite childlike with this book. I have things to fill in! A bit like scrapbooking, or wreck this journal (but less fun), but notably more useful!

During your journey with Jenna through ‘life with IBD’, you will have multiple pages which you can fill in and refer back to:

Being diagnosed   |   Make a note of your own triggers
Dealing with your diagnosis   |   10 questions to ask your doctor + additional
IBD and mental health   |   Coping with anxiety
IBD and mental health   |   Record some things you are proud of (Grab some paper)
Nutritional supplement and IBD   |   Supplement introduction and tracking
Staying hydrated with IBD   |   Record your food choices and responses
Dealing with a flare-up   |   Symptoms log for during a flare