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.

Analysis
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
LOFFLEX
PALEO
Fasting 5:2
Low FODMAPS
Specific Carbohydrate Diet
GAPS
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
Supplementation
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

Conclusion
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:

Workbook
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 

Tuesday, 14 March 2017

BEING FUCK UGLY IS A PERFECTLY ACCEPTABLE REASON TO BE IRRATIONAL AND SAD

I don’t consider myself to be a very vain person, not since I’ve been an ‘adult’ at least. You notice I say ‘adult’ in inverted comas, as I’m still pretty sure I’m not getting this whole ‘adult’ (there it is again look), thing quite right. I suspect we’re all just wingin’ it really, just no one really wants to say how confused they are about the whole adult situation.

Anyway, back to the original matter! Vanity – I don’t think it’s something I suffer from, I guess mainly because I don’t consider myself to be that attractive, but you get used to your own face don’t you? I was at least, comfortable with mine, after all the bleaching of facial hair and keeping the eyebrows in check routine has taken place, OBVIOUSLY.

It turns out that if you make my ‘acceptable’ face any more unattractive then I do, in fact have a sudden attack of the ‘fuck me, I am a monster’ collywobbles.

If you’re not interested in me whining and a million pictures of my dodgy face then I suggest you STOP RIGHT HERE.

At the end of November a psoriasis patch appeared on my chin. “No matter, I am stocked up on Diprobase, I’ll soon shift it” I thought.

So I’ve been slathering this little patch of psoriasis for a week and it’s not doing anything so I dig out the 0.5mg of Hydrocortisone cream I had for it from the GP last time it flared up and I buy scent free soap.

A few weeks later and by now I have tried:
Diprobase
Hydrocortisone 0.5mg
E45 wash & E45 cream
Emollient wash & cream
1mg Hydrocortisone cream

But it’s no longer just dry, it’s red, lumpy and itchy and all I can do is keep it moist so the skin doesn’t thicken and become scaly -.-

I try to get a GP appointment whilst I’m off work over Christmas period but apparently, so does the rest of the population! So I try the Dovobet cream I have been told previously is too strong my face.

I finally get a GP appointment early January, but by now I have lots of little red spots spreading over to the other side of my chin, plus angry patches at the side of my nose, and if I am completely honest, I am feeling a little bit pissy about it.
I tell the GP what I have tried already and am prescribed Fucidin cream, which is antibacterial + steroid cream and I am told to come back in a few days if it hasn’t worked as it might be worth referring me to a dermatologist.
It doesn’t help, so I am prescribed Fucibet cream which is antibacterial + a different steroid (the same one that is in Dovobet), and I am told to come back in a few days if it hasn’t worked and that I will be referred to a dermatologist. I also begin smothering my face in Vaseline in an attempt to stop it drying out, which also doesn’t work.

The next time I am prescribed Nizoral, which is an anti-fungal cream and am told to come back in a few days if it hasn’t worked and that I will be referred to a dermatologist (noticing a theme here?).

Now there’s a bigger issue and my pee looks like Ribena so I have to go to the GP with a UTI, and I am not allowed to discuss more than one issue during an appointment. The UTI, turns kidney infection which completely wipes me out for a few days and I really don’t have the energy to visit them about my face during this time, and when I finally do have the energy, I still have a kidney infection and need more antibiotics so that’s the content of that appointment. Fucks sake!

I finally make it back to the doctors just over a week after being prescribed the Nizoral and am given Metronidazole antibiotics, but by now the patches near my nose and the patch (which now completely covers my chin) are joining together via a series of spots. I ask for a referral to a dermatologist as it’s clear that the doctors don’t know what it is or how to treat it, and I haven’t once seen the same GP, or nurse prescriber about it so they don’t know how fast it’s spreading. 

I’m sure you can understand that by now I am feeling fuck ugly, majorly frustrated and not wanting to leave the house. I mean seriously! Look at my shitting face!

I begin researching what it could be, as it seems clear to me that this is not the standard Psoriasis that I usually have. It looks like it is something called Rosacea - pronounced rose (like the wine) sha.

It’s constantly getting worse, it’s red, it’s bumpy, it’s sore, it burns, it’s dry and it has little white headed spots dotted around. A dry patch appears between my eyebrows (see picture above, I hadn’t actually noticed then as I was too concerned with the bottom half of my face), and I quickly tackle it with the steroid cream, but it doesn’t help, the next day, that is also beginning to spread and I now have a lump under my chin which is sore and tender to touch.

I am now at a point where I completely hate my face, I don’t want to go outside, I can’t sleep at night because of the burning and the itching and I am dreading what I will be faced with the next day when I wake up, and when I do wake up, I look in the mirror and I cry about it because lo and behold,,, I’m even fucking uglier! I read that ACV can help get things under control, and by now I am desperate so will try any home remedy I can find.

The referral letter comes from the dermatologist and I am to book my own appointment by phone or online, but it’s Saturday so I opt for online. There are no appointments available so the request is sent on to the hospital and they will send me one through the post, but 92% of patients wait 18 weeks. 18 weeks?! WTF…. This is also the day that my skin begins peeling off. I go to bed coated in steroid cream, hoping it will at least ease the burning. It doesn’t.

The waiting time for a dermatology appointment has tipped me over the edge and all I can do is lay awake and cry with my burning red face. I decide I WILL be going back to the GP, and that will is reinforced when I wake up Monday morning to find it is trailing up my forehead and ALL OVER my cheeks!

Metronidazole is not one of the medications that is used to treat Rosacea, which is what I am sure it is, and I am pissed off that none of the appointments so far has seen any of the doctors or prescribers even look at my face properly.

The man I see is a complete cock. He talks to me like an idiot and tells me that antibiotics are a long term thing and I end up shouting and then crying whilst explaining, no one has even bothered to try and identify what it even is to actually treat it properly. What I think it is will not respond to those antibiotics no matter how long I am on them and waiting 18 weeks to see an expert is not good enough because I fucking hate my face and I do not want to leave the house! He is nicer to me after my snot fest and makes me an appointment with the only GP at my surgery that actually knows anything about skin for the next day. I can’t help but wonder, why did someone not just do this before??

I research some more when I get home, and on one of my ‘I hate my face’ Facebook posts, I am asked if I have looked at Perioral Dermatitis. I look at this, and only then do I come across the variant of perioral dermatitis, STEROID INDUCED Rosacea! It is a light bulb moment! I jump out of bed to wash the steroid cream off my face! I inspect it in the mirror and I look at how far it has spread and I realise that every time there has been a new dry patch of skin, I have put the steroid cream on it, and THEN it has spread. So, I know what it is, now I just have to get the doctor to agree with me!

I take notes with me to the doctor’s appointment, including info about the condition and how it presents itself, and a list of medications used to treat it. I WIN. I get the right antibiotics, I buy more E45 to help soothe my peeling face and I stop using the steroid cream. I am aware that stopping the steroid cream is actually going to cause it to get worse before it gets better so I have arranged to work from home. I know it could be several weeks or even months before it actually goes away and I honestly just want the ground to swallow me!

As suspected, my face becomes even angrier. Where there were spots of red there is now just whole big blobs of red, and the spots start tracking towards my eyes from the bottom and from the top, even appearing on my eyelids. My top lip, which was previously OK, becomes covered too. I have also gained a second tender and sore lump under my chin, right next to the first one, which I can only assume are glands, frustrated at fighting off infection?

I am NOT going outside, I am not even talking to people. I stop checking Facebook and I hate even putting the TV on because the pretty people in it, with their perfect faces, just PISS. ME. OFF. I find myself only willing to watch Myth Busters, starring two below average looking males.

I set about applying more ACV to my face, as my chin (where I tested it previously), whilst still red is actually less red, less bumpy and there are no little white papules on it so it feels much smoother. I don’t expect after ones skin has peeled off that it would be normal skin colour straight away, but it’s definitely heading in the right direction. I put it on every tiny spot and patch and the worst bits by nose scab pretty quickly. I can’t move my nose without extreme discomfort for a good few days but slowly, the infected skin begins to come away. The less aggravated bits just dry and peel away with no scabbing, but it happens gradually so every few hours I am peeling and rubbing dry skin off everywhere, but by now it has stopped spreading so I know this is the worst it’s going to get. The tender lumps under my chin disappear, I can only assume that this is a good sign.

My skin continues to flake and peel but I have routine now so am dealing with it the best I can. By dealing with it, I obviously mean I am crying multiple times a day between attempting to rectify my face. I am bathing every day, and soaking my face with a soft flannel whilst laid in the bath (which has oats in by the way – another home remedy), I am washing my face multiple times a day whenever the itching gets really irritating, again the water each time I wash my face has oats in. I am applying what can only be described as ‘oat scum’ face masks in the morning and at night whilst draining the bath so I can shower off the breakfast scented water, and I am only using a sensitive skin face wash and applying E45 a million times a day. When I am in the bath after soaking my face with the oaty flannel, I am able to rub off a fair bit of dead skin without any discomfort so the routine to try to improve things is time consuming but it’s working SLOWLY so I stick with it.

The skin on my cheeks and my nose is slowly getting smoother but under my jawline and around my eyes, where it’s too sore to rub off skin is still bumpy and more red than everywhere else. Persistent little bastard, but I refuse to give up! I am too fucking ugly to give up.

Something finally happens around my eyes! Unfortunately, this is what happens…
The dry skin has thickened and become somewhat stiff, meaning I can’t actually open my eyes properly. Still, I will not give up! *whispers* please let me give up

I man up and return to working in the office on Monday, after having 3 days the previous week working from bed, in the dark, which is exactly where I want to stay!

It’s tiring and it’s pretty boring having to stick with the routine every day but I know I need to. Slowly things are clearing though. The skin around my eyes appears stubborn and is really pissing me off. If I try to cover up with mineral powder or anything it just settles in the crease and extenuates the lumpy appearance and I genuinely look like an old lady!
I had cancelled plans to travel to London for a friends 50th Birthday Party because there was literally nothing I could do to make my face more presentable, but as things are slowly calming down I decide that I should man up and go. I attack my face multiple times a day with the ACV as it seems to be the only thing that actually works, but by the time I go to London, I’m not quite fixed… The night before I try multiple methods of applying makeup, but each method has the same result – old lady eyes!
I am disgruntled to say the least… I shower in the morning before travelling to London so that I can wash as soon as I get there and keep applying moisturiser in an attempt to soften the skin around my eyes and stop the skin on my cheeks becoming flaky when I put makeup on.

When the time comes to actually apply makeup I am shit scared in case it goes wrong, because there is NO TIME to wash and re-apply a million layers of moisturiser. I can’t cover the patches of different coloured skin as well as I had hoped because the thicker I apply the mineral powder, the more likely it is my face will dry out and start to show flaky skin.

To be honest, it probably goes as well as it could have. I don’t like it, I am not comfortable going to a black tie event with my face like it, I want to sit in the darkest corner possible, I wear a ‘hide me in the background’ dress, put shimmery shit around my eyes so you can’t see the little lumps on my eyelids as prominently and I curl my hair hoping it will distract from my face and pray no-one notices me.
To my irritation, it’s now 3 days after the party and the creases and the dryness and the lumpy eyelids have pretty much buggered off!

Don’t get me wrong, I am not blind, I KNOW that my skin tone is very un-even but I have been burning my face off with vinegar so what do you expect? If needed I can throw on a little mineral powder to even it out a bit, but to be fair I probably won’t because I’m not a fan of makeup.

It is safe to say that steroid cream will never again touch my face, nor will I ever take for granted my ‘acceptable’ face!

I feel a bit better, I will be joining the online world again very soon – thanks for being patient with me!

For the stages of ugly – fuck ugly – you really shouldn’t be allowed outside – fuck ugly – ugly – becoming acceptable, see below xxx

The beginning of the spread (Feb 21st)

Angry after I stopped using steroid cream (Feb 25th)
My chin and between my eyebrows has peeled and are much less bumpy and angry (Feb 26th)

9 days after it was at its worst, and it’s mainly just around my eyes (March 6th)

The day before the party – fucking eye issues (March 10th)

Today (March 14th)


If I didn't have IBD, I probably wouldn't have Psoriasis. If I didn't have Psoarasis I wouldn't need steroid cream. If I didn't need steroid cream I wouldn't have steroid induced Rosacea.
So in short, IBD made me ugly.
Suddenly regretting complaining for all those years that Invisible Illness doesn't show up on your face to let people know you're ill...
Ladies and gents, let me introduce the 'not at all invisible' Extra Intestinal Manifestations of IBD!