Have You Ever Thought About Volunteering?

If you have some spare time and are willing to develop existing and new skills you can volunteer with Crohn’s and Colitis UK.

Anyone aged 18 years or over can volunteer.

Don’t worry if you think you might not have the skills to carry out roles that you are interested in because we sometimes provide role-specific and more general training for volunteers.

Volunteering isn’t just about sharing your skills and experience. Crohn’s and Colitis UK volunteers tell us that through volunteering they make new friends and develop confidence and self-esteem.

To find out how to get involved with Crohn's and Colitis UK click here.

To find out what particular roles are being recruited for now click here.

What Do Patient Panels Do?

An IBD Patient Panel is a group of patients who have Crohn’s disease/Ulcerative Colitis and who use the same IBD service at their local Hospital.

They believe that they can help improve the local service by meeting with the staff who provide it by:

• sharing their thoughts, experiences and aspirations on service improvement
• acting as a sounding board for proposed service re-design and changes
• raising the profile of IBD Services through events like IBD Departmental Open Days
• influencing decisions around the improvement of the provision of their IBD service

They are different from most Patient Panels because they are both disease (Crohn's and Colitis) and service/hospital specific. This means they can speak with the authority of personal experience about a service with which they are intimately acquainted, and, because they suffer from an illness which is a Long Term Condition many of them have become experts (in their own condition) by experience. They are committed to the ethos of partnership working through the co-design of services.

There are about 40 such IBD Patient Panels at hospitals around the UK and are supported by Crohn's and Colitis UK. They usually meet about four times a year, sometimes more if they are working on a particular project

Their overall aim is to improve the NHS experience of the IBD Patient at their local hospital.

To find out more about Patient Panels and the work they carry out click here.

Guest Writer Harvey - Telling School

Me, Myself and My Immune System: A brief timeline of my love affair with Crohn’s Disease.

Harvey Hancock

Part TWO

Two days later. I am ready to go home from a two-week hospital stay where I learned I had Crohn's Disease, aged 10! I vow never to watch Scooby Doo as long as I live. I say thank you to the nurses who shoved thermometers in my mouth and pricked me with needles, give a hug to the special nurse called Sian who is very pretty and very friendly (I never see her again) and wobble my way back to the car. Two weeks in a hospital has taken its toll and I look forward to sleeping in my own bed, but things don’t go to plan. I stay feverish, with flannels all over my head to cool me down. I sleep fitfully and wake up shaking. I reluctantly agree to spend three more nights in the hospital.

Fast forward a month. I am on huge doses of medication and my face is swollen up from the steroids. I am at home and enjoying the last week of the summer the way any 10yr-old should – running back and forth from living room to toilet, sleeping with 3 fans in his room and not spending any time with friends(!). My only visitor is a teacher from school.

Mr Wallace, who is going to be my teacher for yr.6 comes along and asks me if I want to share the details of my diagnosis with the rest of the class when school starts in September. Kids can be cruel and I don’t want to regret anything, so I tell him I’ll see how I feel. I joke with Mr Wallace about how I could maybe say to the class that “every Friday evening, I turn into a big green monster” and he genuinely laughs, telling me that that is the exact kind of things that will make the children understand that I’m not to be feared, that I’m still the same Harvey. He leaves and I know that, with him as my teacher, I will be safe from the bullies.

 

Fast forward to the first day of school, and the moment of truth arrives. My friends have all asked about my fat face but I have declined to answer their queries. Whilst Sarah H talks about how she spent her summer dancing, I do some maths and work out that my 6 week summer holiday was split into 3 perfect parts – my holiday to Portugal, which was a write-off, my two weeks in hospital, which were a write-off, and my final two weeks of my holiday, also a write-off. As I look around the room, taking in the posters and noticeboards, the drawers to put our work in, and the bookcase full of new dictionaries, I realise that I am so, so relieved to be back around the children with whom I have grown up. Mr Wallace asks: “So, does anybody else want to share what they did with the summer holidays?”

I’m a confident child and, if I may say so, a pretty popular figure in the class, so I have no problems with public speaking. However, as I find my hand raising itself, almost automatically, I consider my ability to sail the impending storm if I do indeed choose to share my summertime misadventure. Mr Wallace doesn’t bat an eye-lid when he sees my hand in the air, a tiny fist with one finger pointing towards the sky, amongst 35 sets of hands that remain firmly in laps or fiddling with hair. “Harvey? How did you spend your summer?”

Many things happen at once. My hand falls into my lap. I question what I want to actually say. I actually put my hand up to say I went to Portugal, and to hide my new identity until the time was right. I see the faces of all the children who were bored stiff by Sarah’s ballroom dancing competition in the summer break. I look at Mr Wallace, willing me to do only that which leaves me feeling safe, understood and happy. In a moment of madness and sensing the silence in the room I say “I spent two weeks in hospital”.

Hair-fiddling stops and all eyes stare at me. Finally, an interesting story! Mr Wallace looks at me thoughtfully and, I will never forget this, he raises his eye-brows a bit and gives me a subtle, questioning nod. I reply in kind. He smiles. “Would you like to tell us why you were in hospital, Harvey, or would you like me to explain for you?”

I get stage fright and ask Mr Wallace to do it for me. I keep my head down, ashamed to be the centre of attention in such extraordinary fashion, so I don’t know what the other children are doing. But I listen. I listen hard, and Mr Wallace does a stellar job, explaining to everyone how I became very ill over summer but am now okay. He emphasises that I am not contagious or to be treated any differently to how I was before the summer. He asks if there are any questions. Simon V puts his hand up, sheepish but still noticeable. I dread his question. Mr Wallace suddenly becomes one of the greatest men I shall ever know by simply ignoring Simon’s hand and moving on. I breathe a sigh of relief and get on with the rest of my day. Nobody avoids me, but nobody asks me any questions; a perfect first day back.

Coming up in Part 3 - dealing with the difficult kids...

What Are The Benefits of Membership?

You might be aware that Me and IBD is brought to you from the UK's leading IBD charity Crohn's and Colitis UK. You can become a member of the charity and receive all sorts of benefits. 

Becoming a member is open to anyone who is 16 years and over. You can join in your own right, or perhaps you are a parent, family member, or a friend. You can also join if you are a health professional, or hospital representative, in fact anyone who wishes to support the work of the Charity.

As a member you will receive:

• National Newsletter
• Membership/Can’t Wait Card
• Information Sheets and Booklets relating to your condition/illness
• A vote at our National Conference and AGM

For more details on how to become a member, click here

Sometimes the best way to learn more about the benefits of something is to hear what other people had to say about it. Here is a selection of feedback we received from members:

An email from someone who had been recently diagnosed:

"I was only diagnosed with UC recently but the one thing my specialist said I must do when he gave me his diagnosis was to join Crohn's and Colitis UK and it was certainly the best money I spent. The amount of information contained within your 'starter pack' made understanding the whole subject of UC so much easier and the meetings put on by the local group have been fantastic for finding out more about the condition and meeting fellow sufferers."

A parent who joined on behalf of their son:

"I joined your charity soon after our son was diagnosed and was so pleased to receive such useful information given in a non-alarmist way. My husband and I attended a number of your annual meetings when they took place in London. We were impressed with your organisation, the content and the wide variety of speakers. We would therefore like to take this opportunity of thanking you for all the invaluable support and information you have given all of us over the years."

Someone not renewing their membership following surgery:

"During the time of being a member of NACC it's been invaluable"

A parent who took out membership following her son's diagnosis:

"I need the Newsletters even if I felt really sad, because it helped me understand his illness."

A lady who was on benefits and unable to pay for her membership:

"I am thrilled you were able to help me and am very grateful for your prompt response and great kindness at this time where not much seems to be good."

Congrats and Thank You To Carrie and David Grant

Congratulations to Carrie Grant and her husband David, for appearing on the ITV Celebrity Gameshow 'All Star Mr and Mrs' and winning £5,000 for our charity.

• Watch Carrie and David Grant talk about their chosen charity on YouTube

Here's a clip:

The TV show was originally broadcast on Sunday 4th August, but is still available online for a limited time.

• Watch the full episode on the ITV Player website

Guest Writer - Jon

Honesty in IBD

My name is Jonathan Clarke and I have Ulcerative Colitis. Those are probably two of the most important things to know about who I am. Another important thing about me is that I have recently published a book about my experience with UC; but I'll come back to that. I've had to come an awfully long way to get the stage of writing about this illness.

Yup, that's me!

I was first diagnosed in 2010 while I was on my Gap Year. I had no inkling of the ramifications Colitis would have on my life at the time, and I had no clue about just how unwell this disease can make you. All I cared about really was that I was having regular, bloody diarrhoea, and I wanted it to stop.

If you had told me at the time that three years later I would be writing a blog about the disease, and wanting as many people as possible to read about it as possible, then I'd have thought you were on too many meds! I was embarrassed to the extent of mortified at the prospect of going to Uni and having to cope in secret with such an intrusive disease. I'd had a bad enough time breaching the subject with my parents.

Fast forward six months or so and I had already dropped out of Uni and was housebound. I had been forced to leave my new friends and girlfriend at the other end of the country and, the way I was then, it seemed like there was no end in sight. I was lonely, I was depressed, and I made it all worse by accepting these (all too common) traits of IBD. I would talk to my girlfriend on the phone about my trials and tribulations at home and it was she who finally suggested I write down all the things I was venting onto her. That night I opened my laptop and just started typing and I didn't stop for several hours and many thousands of words. I had composed a substantial diary of my time with UC including many anecdotes of my experience.

For much of that year Colitis dominated my life and I realised that I was going to have to get used to it. There was nothing to be gained from brooding or asking "why me?" and so I did what I should have done a year before, and opened up. I sent what I had written to my friends and family, most of whom I had avoided speaking to; simply because I had nothing nice to speak to them about. It was only once I started getting the responses that I realised what a disservice I had done to myself and those around me by choosing to be isolated.

This disease, as most people here will know, is hugely misunderstood. It's more than just a "bathroom illness" it is a systemic problem, and it was only by being honest with everyone that they could really appreciate that. And it's not just a physical disease, it's a psychological one too. The two sides of IBD are intrinsically linked however, and helping one side of the coin will translate to the other. I found it so frustrating that my consultants never asked me how I was coping mentally. It was only when I said that "today's been bad because I've had to leave the house" that any doctor treated me as patient, rather than a puzzle.

Colitis used to be something I would avoid talking about at all costs, but now I am frequently asked about, I am writing about it, and even joke about it. As I said at the start it's become part of who I am, not just a negative extension. My life improved drastically after doing something as simple as talking. My anxiety improved, my embarrassment was non-existent, and in fact I became as happy as I've ever been in my life.

Since then I have promoting my book to the wider public; and I have been shocked at just how frequent IBD is. You can read all the statistics you want, but until you start meeting fellow sufferers it doesn't mean anything real. I was amazed at how often upon hearing about my illness the response would be: "ah my Mum has that" or "my friend's been unwell too" and even "Me too!". The funny thing about the last one is how excited people are about meeting fellow sufferers. More often than not the reason is because they don't have to shy away from the gory details, they don't have to play down the extent of a flare up because they know I can relate and I know that what you see is not what you get with IBD. But from what I've learnt they shouldn't have to shy away from this with anyone.

It hasn't just been IBD sufferers who are keen to talk to me about my symptoms either. I regularly find people who have overlapping issues like bloody diarrhoea and who have not been diagnosed. Of course I urge these people to speak to their GP. If you can live with something it's all too easy to just accept it or even ignore it. Especially if the problem is an embarrassing one. But you will always find than being honest is never as daunting as you may think. They say that a problem shared is a problem halved; and they are right. When I got ill I thought that a problem shared is a problem spread; and of course I was wrong.

When I first wrote my book it was with the intention of spreading awareness through those 

closest to me. But the reason I continued writing (apart from the cathartic aspect) was because I had found out first-hand how important it is to spread awareness on a wider scale. I don't know if there are any more misunderstood or underestimated diseases out there, but there can't be many! Unless you live with it you will never fully understand, but reading about someone's personal experience is the next best thing.

The more honest you can be with those around you, the more comfortable your life will become; and that's a big factor in being healthy. And people will appreciate your honesty. 

There's no second guessing or wondering: they know.

If you want to find out what my experience was like then please visit this website: www.shituation.net where you can find out about me and my book and even order a copy for yourself or for a friend!

If you want to know more or have anything to ask at all then tweet me @Sh_thappensJC or find my own blog at jonclarke14.wordpress.com. And remember: talking helps. It may not stop you shitting; but it helps. 

Guest Writer Harvey - Young Diagnosis

Me, Myself and My Immune System: A brief timeline of my love affair with Crohn’s Disease.

Harvey Hancock

Part ONE

Rewind to summer 2001. I’m on holiday in Portugal. I should be enjoying the sun but I am peering into the toilet. I am so impressed by the sight my 10yr-old eyes see that I call my mum in so she can view this biological magnificence. “Look Mum!” I say, “I’ve got snot in my poo!”

Fast forward one week. I’m in the car on my way home from the airport. It’s not very late but I’m sleeping again – I’ve been doing that a lot lately. Mum keeps poking me awake, which I don’t enjoy, to show me the really interesting places we’re driving through. I’m 10. I have no interest in being woken up by a prod in my chest to be told that Biddy, or Elaine, or Auntie Melanie lived in this town. She would reveal to me 11 years later that she agreed this was a poor excuse to wake a sleeping boy, but, at the time, she didn’t want to tell me that she was waking me to make sure I wasn’t dead.

Fast forward one day. I have been rushed into hospital and am being admitted into the children’s ward. Apparently such sudden weight loss and “interesting bowel movements” aren’t common in healthy young boys. I get a room to myself, but the TV has no remote; this shouldn’t really bother me given the circumstances, but watching Scooby Doo is higher on my agenda than having strangers shove thermometers in my mouth, and certainly higher than the struggle to make it to the toilet in time every 45 minutes or so. I am massively dehydrated and feverish, sleeping with a fan in each corner of the room. Everyone else wears blankets around them when they sit with me but I am still swelteringly hot in my hospital gown, giving me a more ghostly shape than I’d perhaps appreciate.

Fast forward a week. Scooby Doo is doing my bloody head in; I get it, it was the janitor. I am accustomed to having strangers shove thermometers in my mouth and my violent diarrhoea. My “interesting bowel movements” are now an hour apart – progress. Unfortunately, I am still not walking. Mum suggests I walk up to the end of the corridor and back. I take my drip stand in my hand – not only is it delaying death by dehydration, but it acts as a rather stylish walking stick. It has wheels and everything. I take mum up on her offer. I know dad is coming by with Sian and KFC (I prefer the KFC to my kid sister) and the thought of tucking into the culinary delights of Colonel Sanders over the hospital’s three-course-melange of mystery meat gets me on my feet. 

As I drag my feeble frame from one end of the corridor back to my room I consider the implications of denouncing hospital food by comparing it with KFC (which, in spite of its name, doesn’t really taste like chicken) but am distracted by a young boy bashing many toys in the play-room. Concluding that the boy and I are not kindred spirits, I decide never to walk up to that end of the corridor again. I return to my room for a quick poo and some well-deserved rest.

Fast forward 3 days. A charming doctor named Julian comes to my room. He tries to pass off his conversation as a secret between the two of us but he is basically talking to my mum. Crohn’s Disease, he explains to me, is basically my tummy deciding to speed up the digestion process to such an extent that it forgets to absorb any nutrients from my food. Moreover, he tells me that this Crohn’s Disease is causing my “interesting bowel movements”, which explains why I am able to see entire meals in my toilet bowl. KFC is quite familiar with the toilet, now – I am eating it every day because dad says that I deserve a treat. Before Julian retires for the day, he also says that I am particularly special; my liver is ballsed up, too! This doesn’t affect me at the moment but Mum says that I won’t be able to drink alcohol in the future. I believe her when she tells me I can “have a glass of champagne on my wedding day, but that’s it.”

Fast forward to the next day. I am actually feeling better. I have finished eating my KFC and it takes almost an hour and a half before my toilet acquaints itself with my dinner – I am an unwilling middle-man in this despicable love triangle. Medication has done its job and I am able to shower without sitting down. My “interesting bowel movements” are no longer interesting and they stimulate me about as much as Scooby F*!"ing Doo – so my dad brings in my Playstation and goes on the hunt for a television remote. It appears the room next door has a television remote, but the mother refuses to share it because her daughter is more ill than I am. I complain more than I should, disregarding the fact that we are kindred spirits. We’re stuck in bed like flowers that refuse to grow, away from home and missing out on the summer weather. Television is our only weapon, our only reminder that the world is having a party – and we’re not invited. Then the runs hit me at breakneck speed and I have to stop playing the philosopher. I let the girl keep the remote.

Coming up in Part 2 - going home, school and telling the other kids...