Employment: Support for Young People with IBD

Yesterday we brought you news about the release of a new report about IBD, young people and work (which can be found on the main Me and IBD website). It raised concerns about finding employment and staying in employment. But what support is there for you?

You probably have the same hopes, aspirations and needs as any other young person, but for you IBD is also part of the equation. If you are looking for a job or are already at work, you may be wondering whether you need to tell prospective or actual employers about your condition. Or whether it is a good idea to tell your colleagues. What rights do you have; what rights does your employer have? What are your options?

All these questions are answered in our information sheet Employment and IBD: A Guide for Employees and some more info can be found in another of our info sheets IBD Concerns for Young People, which has all sorts of general info about life with IBD. 

Many people with IBD want to and do have a a successful work career, but sometimes managing IBD at work can be a challenge. Raising awareness of Inflammatory Bowel Diseases, their impact on work and the simple steps that employers can take to improve working conditions is what the charity is striving to achieve.

One way we've found useful is the Crohn's and Colitis UK 'Good Desk Bad Desk' website - www.GoodDeskBadDesk.com - which shows (unsurprisingly, given the name) a Good Desk and a Bad Desk for an employee with IBD. It's a really simple way of showing employers the nightmares that can be overlooked by people who are ignorant of IBD symptoms. The really basic stuff - such as being near the toilets or a bit of flexibility for hospital appointments. These things can make all the difference.

You can also help inform your new boss and work colleagues about IBD by giving them the information sheet specially designed for employers. It is intended to help employers and managers understand what it means to have IBD, and how it can be possible, sometimes with minimal changes, for people with Ulcerative Colitis or Crohn’s Disease to work successfully and to fulfil their potential. It also considers the legislation that is relevant for managing people with such long-term health conditions.

"These challenges can be overcome but it requires action from people with IBD, their teachers, employers, and careers advisers, as well as policymakers and health professionals. By working together to implement some simple measures, we believe that people with IBD can be supported to gain the qualifications, education or training and access the careers they want, benefitting not only themselves and their families, but society and the taxpayer as well."

David Barker

CEO of Crohn's and Colitis UK

DID YOU KNOW??

One third of NEETS (that's those young people who are Not in Employment, Education or Training) don't claim benefits. 

If you'd like more information on your rights and for more details on what you may be entitled to head over to our main website, where there is a wealth of information. Click here.

Guest Writer Lindsay Talks About the Importance of IBD Nurses

With any chronic medical condition comes a certain amount of fear. Especially when it comes to medical

problems which are prone to peaks and troughs. For a lot of people, that’s exactly what IBD is. You have weeks, months, maybe even years of nothing, and then – BAM. It hits you, and you’re back on the toilet. All. The. Time.

The fear comes from not knowing when that ‘bam’ is going to come along.

I’ve been ‘in remission’, in the words of my very kind and talented consultant, for a good couple of years now. My ‘bowel movements’ (17-year-old me is thinking, ‘kill me now,’) are fairly regular and under control, there’s no bleeding to write home about, I’m only ever in pain if I eat red or processed meat or a lot of pastry (Gregg’s is my nemesis) – overall, I’m doing pretty well.

But even though I’ve been given the r-word, the IBD team at the hospital are happy with me and my blood results are always normal, apart from slightly low iron levels, I live my life just waiting on something going wrong.

Take the last few weeks for example. I’ve lost a lot of weight. As soon as this happens, the warning bells start going off.

“I’m dying, aren’t I?” I mumbled to myself as I stepped off the scales. I’d lost half a stone in a fairly short space of time. In my head, it was Crohn’s. It was over. I could see the steroid prescription in my mind already.

Add onto this the slight twinge of pain I had on my lower right side, round about where my surgery scar marks six-and-a-half years since a small bowel resection. Warning sign number two.

Then there was the leg lumps. Another weird and wonderful Crohn’s symptom which I seem to get. ‘Erythema nodosum’ is the clinical name for this one, meaning red nodules. Basically, when there’s activity in the bowel, it causes these lumps to form on your legs. I don’t get understand either. I learned a long time ago to just accept whatever Crohn’s had to throw at me, because if I started questioning it, I’d go insane. In the last couple of months, I’ve had two delightful red lumps appear on my left leg, hard and hot and angry, causing my ankle to swell up. A great look in the summer months. Especially when coupled with a facial expression which reads: “Oh my God. I’m having a FLARE UP.”

So there I was, convinced that this was the end. I completely disregarded the fact that the weight loss could be due the fact that I’ve been incredibly busy at work and forgetting to eat regularly. (Rule number one – never forget to eat if you can eat.) The pain could’ve been explained by dinner out with a friend, a combination of indigestion and my stomach being delighted that I was actually feeding it something more substantial than a shop-bought salad and half a packet of crisps. And, I’ll admit it; I was a touch on the stressed side, (rule number two – never go for a job in journalism if you want to avoid stress), which can sometimes make the old leg problems flare up, according to my mate Dr Google.

But I ignored all of this logical thinking, and I called my brilliant IBD nurse. I’d just had my bloods done, so was calling for results (which were surely going to scream, “YOU ARE HAVING A MASSIVE FLARE UP LINDSAY!”), but I was ready to start wailing down the phone at her about all my symptoms and tell her that I’m doomed, DOOMED, and possibly start whimpering about not wanting another colonoscopy before she had time to even say hello. But her familiar, reassuring voice made me ask about the results first. And she told me, no, everything’s fine – just your folic acid that’s low, but we’ll get you on a supplement for that.

So I’m relatively healthy. Despite my best efforts in my head, I’m pretty normal (first time for everything). And hearing that, medically, there was no reason why all of this should be Crohn’s-related, I rationalised it all. But I have been reminded of a few things.

Know your own body. It’s really important to be aware of any changes, whether it’s a bit more bloating than usual, going to the toilet more or less frequently than you would do normally or weird stuff like your legs doing insane things or a twinge of pain in your belly.

Look after yourself. This is one I’m rubbish at. Eat as well as you can. Stick to what you can eat. Take the supplements and vitamins if you need them. Get plenty of sleep (I never do). Don’t let stresses get on top of you. And, basically, don’t give your body any excuses to have a meltdown. I’m thinking of taking up yoga. I have this vision of myself being some sort of Zen queen who floats around in cheesecloth dresses with my hair flowing free like Blake Lively’s, ensuring I stay in remission forever and ever. It’s never going to happen, but a girl can dream.

And lastly, IBD specialists are the best. If I had had a problem, a real problem, my local IBD nurse would’ve been able to help. In the last year, she’s dealt with wobbly voiced phoned calls from me twice, when in the throes of Crohn’s induced panic. “I’m bleeding!” I wailed. “I can’t have a flare up! I have a magazine going to print!”

On both occasions, cool as a cucumber, she told me that she was pretty sure it would be nothing because a) she knows me and she knows I’m bordering on hysterical at the best of times and b) she’d seen my blood work lately and it was all fine, but she booked me in for a scope within days and had me hand in some samples. She also managed to arrange it around work, which was good of her.

Not everyone has access to IBD nurses. Crohn’s and Colitis UK’s most recent survey found that one in five people don’t. This is, quite frankly, outrageous. These specialists are so, so important to people with IBD. Whether it’s for medical treatment, reassurance or just something to answer ridiculous questions, they’re amazing. Anne-Marie, who I go to see every eight months now, is genuinely lovely, very down-to-earth, so reassuring and won’t let me panic, even if I really want to. I’m really lucky to have access to her. And, to be honest, it’s made me reluctant to move out of this area, because I know that there’s no guarantee that I’d have this great clinic system elsewhere.

So keep calm, IBD sufferers. After all, there’s that old rumour that stress and worry makes this thing worse. If you have got access to an IBD nurse, make use of them. They’re there to make sure you’re OK. And if you don’t have one? Get involved with Crohn’s and Colitis UK to see how we can get the ball rolling to make sure everyone has access to this vital resource.

1 in 5

That's the number of young people from our survey that still didn't have access to an IBD Nurse Specialist. These nurses guide and support IBD patients through treatments, surgery and the day-to-day challenges of living with IBD.

The survey showed that IBD Nurse Specialists play a crucial role in helping young people to cope with the impact of diagnosis and treatment. Yet, one in five of these patients still do not have access to specialist nursing - despite the call by the IBD Standards (2009)1 that every IBD patient should have this right of access.

So it was worrying to find that 1 in 5 of those who answered our Young People survey still didn't see an IBD Nurse.

Where available, an IBD nurse was the first port of call for 71% of young patients when they are experiencing a flare, according to the survey. A comparable survey in 2007 found that only 35% of young patients contacted a specialist nurse, suggesting that there is now better access to nurses, and while this reflects a positive development in the management of IBD – there is still room for improvement.

David Barker, Chief Executive of Crohn’s and Colitis UK admits “The young patients themselves pulled no punches when detailing the seriousness of these conditions.  Nurses are key in achieving successful communication with these vulnerable patients which can help mitigate the impact on the individual and on society. These nurse posts must be protected from cuts, and their numbers increased still further.”

“They need to look at how treatments may affect lifestyle, not just how they will try to control symptoms,” was a thread running through responses to questions about communication with their healthcare team. Young people want more frequent communications, including email, with their healthcare professionals and pointed out how difficult it can be to talk to their consultant, in the absence of an IBD nurse.

Award-winning Joy Mason, IBD nurse specialist at Colchester Hospital University NHS Foundation Trust, explains, “The incidence of Crohn’s and Colitis appears to be increasing, occurring most commonly in teenagers and young adults, with their disease being more extensive and requiring more surgery than adult onset IBD^2,3.  Access to support and help is more vital in this age group than ever before. Certainly, major improvements have been made however; there is still work that needs to be done, especially in training nurses in the care of young people with IBD.”

Young patients also expressed their frustration when healthcare teams failed to point them in the direction of the charity and the help it offers e.g. Newly- Diagnosed Patient Packs. Crohn’s and Colitis UK has launched a new dedicated micro-site www.MeandIBD.org aimed at young people and teenagers with IBD, offering support and information.

To read the reports click here.

REFERENCES

1         1. Quality Care Service Standards for the healthcare of people who have inflammatory bowel disease (IBD). © IBD Standards Group 2009.

2.       2. Rising Incidence of Pediatric Inflammatory Bowel Disease in Scotland. Inflamm Bowel Dis Volume 18. Number 6. June 2012 Henderson P et al.

3.       3. Increasing incidence and prevalence of the inflammatory bowel diseases with time, based on systematic review. Gastroenterology. 2012 Jan;142(1) Molodecky NA et al.

Crohn's and Colitis UK Groups

Membership:

Crohn's and Colitis UK members are asked to pay an annual subscription of £15. New members who are on a low income due to their health or employment circumstances may join at a reduced rate. Please email Penny Ingles on the Crohn's and Colitis UK membership team for more information. Overseas members are asked to pay £20 annually. Additional donations to help the work of the Association are always welcomed. Click here to join Crohn's and Colitis UK now.

• Young people aged 16 to 18 can join Crohn's and Colitis UK for free using our online form
• Students who are in full time education can join Crohn's and Colitis UK for free using our online form

Groups 

There are Crohn’s and Colitis UK Groups in most parts of the United Kingdom. If you give your permission when you join or afterwards, we will pass on your name to the Group in your area. These Groups are run by local volunteers and offer educational or support meetings, news of local publicity and fund-raising activities, together with a local point of contact. Click here to find your local Group.

Aims of Groups:

• To help people who have Ulcerative Colitis or Crohn’s Disease and their families by:
• Encouraging local support and self help.
• Providing information and support.Increasing awareness of the charity through:

               - Publicity to non-members.

               - Information to members.Links with the health profession and hospitals.

               - Local media and events.

• Encouraging members to take an active role within the charity.
• Raising funds for local and national needs.

The types of activity undertaken or service provided by a Group may include:

• regular self-help or support group meetings
• educational meetings with a speaker or panel of 'experts'
• question and answer sessions
• social events
• 'at home' or 'coffee' mornings/evenings to introduce people to each other
• making videos or books available on a library basis
• a local newsletter
• contacting new or potential members to tell them about Crohn's and Colitis UK
• liaison with hospital staff to publicise Crohn's and Colitis UK
• local publicity (posters, media etc.)
• fundraising events and appeals
• representing the views of members to other local organisations or public bodies
• advocacy for individual members
• promoting the 'Can't Wait' card

We're Just On the Other End of the Phone

Crohn's and Colitis UK Contacts are trained volunteers who offer emotional help and support at the end of the telephone to members and non-members alike. Anyone may call, whether they have IBD themselves or are the relative or friend of someone who has IBD.

All calls are kept strictly confidential and you do not have to give your name if you prefer not to. Contacts do not give medical information or advice, but can offer support at times when you may feel that you wish to talk through problems, situations or feelings with someone outside your immediate circle of family, friends or health care professionals.

Who are the Contacts?

Crohn's and Colitis Support (formerly NACC-in-Contact) was established in 1989 in response to the many patients and relatives seeking confidential personal support in coping with Ulcerative Colitis or Crohn’s Disease.

Contacts are members of the Association who are willing to offer themselves as supportive listeners over the telephone. They are usually patients or relatives of patients, and therefore can offer a very personal quality of understanding to those who call them. Contacts are volunteers, and all have been selected and trained for their listening skills.

National Support Line - 0845 130 3344

The National Support Line has extended its hours to provide a service from 1 - 3.30 pm as well as its existing opening hours from 6.30 – 9 pm every Monday, Tuesday, Wednesday, Thursday or Friday (excluding English Bank Holidays). Contacts can be reached by ringing the National Support Line number 0845 130 3344. Callers are charged at local call rates from most phones but not mobiles.

If you have any comments on the Crohn's and Colitis Support (formerly NACC-in-Contact) service, please e-mail or use our contact form

Guest Writer - Ben

Ben is 28 and was diagnosed with Crohn's in 2006. He has a blog called MeandMyCrohns. He's pictured here in a dinosaur onesie (everyone should have one of these!) at the recent Rutland Walk, raising money for Crohn's and Colitis UK. This photo was taken shortly before he completed a 25 mile bike ride on a tandem with his wife (also in a onesie).

Real friends understand that you may have to drop plans/leave pub/activities

A big part of being young is socialising, yet this can be one of the more scary sides to living with an Inflammatory Bowel Disease (IBD: Crohn's Disease and Ulcerative Colitis). You can work yourself up into a state and cause yourself excessive amounts of stress. You find yourself over thinking situations that your friends wouldn’t even begin to consider.

Pub toilets (I can only speak for the men’s) can be terrible places if you are unprepared. Certain drinks can cause a tummy upset. Meeting friends in the middle of a field for some kind of sporting get together can be a daunting proposition.

You worry that the toilets may be too far away, or what happens if you have an “accident”? What will your friends think if you cannot join in with the drinking games because unbeknown to them you have started a new medication that you shouldn’t be mixing with alcohol? Or will they be mad if you are late due to a last minute dash to the loo that turned into an hour long epic bowel battle?

All of these thoughts can cause your head to whirl and you may end up cancelling the event or your participation in the activity.

This is an upsetting position to find yourself in; I know because I, like every other sufferer, has at one time or another been there. You become hard on yourself, you feel like a letdown.

I am massively stubborn and refuse to let my Crohn’s Disease rule my life. It has and always will influence my choices but ultimately I will not allow it to dictate what I can and can’t do. This approach to a life with IBD can sometimes catch you out as Mr Crohn’s will try and assert some authority.

You may find yourself in a pub attempting to hover over the most disgusting toilet you have ever seen whilst simultaneously trying to keep your jeans from touching the gross, urine sodden floor or maybe when you believe you are in a safe position to be able to pass wind only to find it wasn’t wind and you are now in a field with a group of mates and something terrible lurking in your underpants.

It is these situations that either make you or break you and I can honestly say you need to be strong. These incidents are only temporary but they teach you to be prepared. You take wipes with you on a night out to ensure the toilet can be cleaned or you carry a spare pair of pants in your bag just in case. Baby wipes are good as they can help clean you up and make you smell nice as can miniature deodorant cans – the pocket sized ones.

You can do all this in silence but it will eventually get you down and take its toll on your mental well being. The best way to cope with Crohn’s or Colitis is to be strong and confide in your closet friends and family. They may not fully understand what you are going through but they will be even more in the dark if you do not share. 

Friends will understand that certain activities are just not suitable for you or that you may need extra time or help. Friends will be there for you in your time of need. They may offer to help you get to a toilet or call you a cab. Friends and family just want to help. They may not know the correct thing to say or do but they are well intended. So help them out. Point them in the correct direction for helping you. Like the Crohn's and Colitis UK information sheet - Understanding Crohn's and Colitis

If you do not confide in your friends, they will never be able to help you. This doesn’t mean they will be perfect. Even the bestest of friends will forget your needs. This is not because they don’t care; it is simply because they see you day to day looking fine. Crohn’s Disease and Colitis present few symptoms on the outside. It’s not like you are missing an arm, or you have lost all of your hair, so there are minimal tell tale signs of being poorly. This can be frustrating when people assume you are well just because you are not moaning about. They forget that the Disease is a battle each and every day it is just that some days are easier than others, so not every day warrants a moan. We save our moaning for the really bad days.

I guess what I’m saying is; we are suffering a disease that is hidden from public view. Nobody feels comfortable talking about bottoms, bums, farts and poops so we need to step up to the table. We are the ones who need to educate those around us. Do not suffer in silence; our friends and family care about us. Plus, with a fantastic network of support around us, we are very lucky.

Crohn’s and Colitis UK offer so much support and information to those affected by IBD. Smilies helps take child sufferers and their parents away from their troubles for a few hours, Me and IBD offers support to teenagers and young adults and Crohn’s and Colitis UK as a whole covers all ages.

We are not alone in this struggle. It may feel like it at times, but be open, take the information available and pass it on.

Ben

www.meandmycrohns.co.uk