Guest Writer Harvey - The Difficult Kids

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

Harvey Hancock

Part THREE

I have come home from school crying again. Gary H keeps puffing his cheeks out to imitate my swollen face and he is doing it every time he sees me. Today he put me in a headlock in the playground and wouldn’t let me out of it until a dinner lady dragged him off me. He says, “I know you want me to apologise but I’m not going to.” to the dinner lady. “Why is that?” she responds. “Because I hate him,” Gary replies.

Fast forward a few months. It is leaving day at my primary school and the year has been very tough. My attendance has been low and I haven’t had any friends. My dreams of sailing through Yr.6 were short-lived and I can’t wait to get away from Gary H. He is stood behind me right now, because we are next to each other in the register. Our procession to get our leaving certificates is minutes away but I’m crying again. Since we were lined up Gary has been kicking me after every step we take, and kicks me repeatedly whilst we are standing still. I ask him to stop. He says “No”. The girl in front of me, Laura G, tells Gary to stop kicking me. He tells her not to tell him what to do, so she tells on him. I am dragged out of the line and into the girls’ toilets and cry my eyes out – I don’t understand why he is trying to make me feel so bad and this is supposed to be my special day. The procession goes on without my name being called, and I am reminded afterwards that people missed me. But it doesn’t really do much to make me feel better.

Fast forward a few months. It is my first day of secondary school. I am excited because nobody will know who I am and how I sometimes have “interesting bowel movements”, and that’s good. I meet my new peers and teachers without having to mention my assorted maladies and for the first time since diagnosis I feel normal. Things are looking up.

Fast forward to next year. I am walking around school and everybody knows who I am. I am the boy with a “pipe in his face” – a nasogastric tube that is used to feed me a liquid diet. I’ve been off of school for 12 weeks now, and I wish I wasn’t back here, where stares come from every angle, but even this is preferable to spending another day in bed watching Scooby Doo. As I get pushed into a locker I reconsider.

Fast forward to 6^th form. GCSEs and AS levels have come and gone, and some of the guys still call me “tubey”. I look forward to leaving this place, to university. I am excited because nobody will know who I am and how I sometimes have “interesting bowel movements”, and nobody knows that I had a pipe in my face. Nobody will know that I was bullied by my friends, even by boys significantly younger than me. I’m nervous, but it’s that excited nervousness. I’ll be an equal.

Coming up in Part 4 - Uni and Conclusion...

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."

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...

Children with IBD (Parent's Guide) Part 4 - Practical Info

If you have a child with Inflammatory Bowel Disease, it is natural at times to feel isolated and worried about how you will cope, especially when your child is first diagnosed. This series of articles have been taken from the Crohn's and Colitis UK booklet IBD in Children: A Parent's Guide and has been produced to help you understand your child’s condition and the treatments that may be used. It also looks at some of the more general concerns that you may have as a parent, and includes suggestions based on the experiences of other parents of children with Ulcerative Colitis or Crohn’s Disease. It has been written mainly for parents of children under 16, but we hope it may also be of some interest to parents of older children.

Practical Tips

There are also some practical things you could do to help your child to cope on a daily basis. Many children worry about having an ‘accident’ outside the house. It may help them to carry a small ‘emergency kit’ containing wipes, disposal bags, and spare underwear. If you are a member of Crohn’s and Colitis UK on behalf of your child, they will be sent a membership card which is also a ‘Can’t Wait’ card. This can help when asking to use toilet facilities when out and about. You can also get a key from RADAR (www.radar.org.uk) which will allow your child to use disabled toilets.

How Can I Get My Child To Eat?

Children with IBD are often thin and even underweight. During flare-ups they may not be very interested in food, or they may feel that eating makes their symptoms worse. Even with treatment it can be difficult for a child with IBD to eat enough to reach their ideal weight, especially during the growth spurt that occurs during puberty. This lack of interest in food can be both worrying and frustrating for parents. You may like to try
the following approach.

• Keep calm and avoid insisting that your child eats, or ‘finishes everything on the plate’.
• Remember, it is the condition that is making them unable to eat, not your cooking.
• Relax your rules about unhealthy food and allow your child to eat snacks and calorie rich ‘fast’ foods, at least some of the time. If you are worried about lost nutrients, check with your child’s IBD team for advice.
• Try offering smaller meals more often during the day, or encouraging an older child to make their own small meals and snacks to eat when they feel like it.

Although children with IBD may grow more slowly than other children, four out of five should reach their full adult height. However, if you are concerned, for example, because puberty is delayed, talk to your child’s doctor. Growth charts and bone age (this can be shown by a wrist x-ray) can indicate how much growth time is left. Your specialist may refer you to an endocrinologist (growth specialist) if they feel your child may benefit from growth hormone.

What can I say to other people about my child’s IBD?

It is up to you and your child whether and how much you tell friends, neighbours and relatives outside the immediate family. You may fear that some people will react badly to the news that your child has a chronic bowel disease. Negative reactions are most likely when people are afraid of, or don’t understand the condition. If you can be open and honest, this is usually the best way to combat any confusion or misunderstandings. It can be particularly worthwhile talking to the parents of your child’s friends, after checking with your child that they are happy about this. Other parents may, for example, be worried that your child’s condition is infectious, or that your child needs a special diet, but be reluctant to mention it until you do. You will probably find that most people are supportive once they know how they can help.

Can we go on holiday with a child with IBD?

There is no reason why you shouldn’t be able to take regular family holidays, although sometimes with a child with IBD these can take extra planning. For holidays abroad in particular you will probably feel more secure if you do plan ahead and, once there, take the usual sensible precautions. You may find some of the following suggestions helpful:

• Choose destinations where you know they will have clean water and familiar food in order to cut the risk of tummy bugs. Avoid shellfish and salads you have not prepared yourself, dairy products unless you know they have been pasteurised, and ice cream from unreliable sources, such as kiosks. Drink bottled water instead of tap water. Carrying a kit of water, wipes and anti-bacterial gel can be useful.

• Ensure you have adequate supplies of any medicines your child will need. Keep drugs in the original packaging, and if you are flying, put them in your hand luggage. (You may need to check with the airline about rules relating to liquids). It is usually a good idea to carry a copy of a letter from your GP or hospital explaining your child’s condition, and why the medication is necessary. This can also be useful to show a doctor abroad, should you need to see one. You may also want to take the contact details of your child’s IBD team with you.

• Discuss with your doctor whether it would be a good idea to take some antibiotics with you on holiday in case a tummy bug strikes.

• Some travel immunisations may not be advisable for children with IBD, so check with your doctor which immunisations would be sensible, ideally before deciding on a destination.

“We have been to Crete and Florida with her UC, gastrostomy, feed, pump
and various meds – we are not letting it stop us living life to the full.”
(Mum of a 14 year old girl with UC)

For more tips and suggestions on managing holidays, see our information sheet, Travel and IBD. You may also need to think about taking out holiday health insurance before you travel. You will need to tell the insurance company about your child’s IBD, and it may be more expensive because your child has a pre-existing medical condition. However, as a flare-up can happen at any time, it may be worth taking out cancellation insurance even for holidays in the UK. If you are holidaying abroad, additional insurance cover for medical expenses can be useful. Although UK travellers in Europe are covered for some of their treatment by the European Health Insurance Card (EHIC) this will not cover all the costs you may incur. Full details are on the NHS website, www.nhs.uk/nhsengland/Healthcareabroad. Our information sheet, Insurance and IBD, includes a list of sympathetic insurance companies suggested by people with IBD.

Coming up in Part 5 - Kids, IBD and School

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

Dealing With Your Feelings About IBD

Inflammatory Bowel Disease (IBD), which  includes Crohn’s Disease and Ulcerative Colitis (UC), is a very individual condition. The symptoms vary widely and while some people go into remission and remain well for a long time, perhaps years, others have frequent flare-ups. Living with a long term illness like IBD can affect you both physically and emotionally. Here we look at how to stay well for longer - concentrating on feelings.


Coming to terms with having IBD

It can be a shock to hear that you have a chronic (long term) illness, especially when no-one can tell you with certainty what caused it or how it will develop. Not knowing what to expect can leave you feeling helpless and uncertain. You may also feel quite angry and upset, particularly when first diagnosed. 

Some people initially respond by feeling completely overwhelmed, or may go into denial. While no-one can pretend it is easy coming to terms with an illness like IBD, it can be helpful to try and accept that you have a medical condition and that you may need to make adjustments in your life. For example, there may be times such as during a flare-up, when you need to rest and recuperate. At other times you may be able to take on new projects and live life to the full. Despite the impact that IBD can have on everyday living, many people with the illness lead very active lives, do well in their studies and are able to work full-time.

Understanding your IBD

Many people with IBD find that the more they learn more about their condition and how to manage it, the more they feel in control of their lives. However, everyone is different and how much information you wish to have is entirely up to you.

At Crohn's and Colitis UK we produce a range of information sheets and booklets about all aspects of IBD, which you may find useful. All our publications are available from our office and can also be downloaded from our website. We also have an information service for any IBD related queries.


Stress, rest and relaxation
Stress is a part of life and no-one can avoid it completely. All sorts of life events such as getting married or divorced, bereavement, work problems, moving house, even just going to family gatherings, can raise stress levels. A certain amount of stress can be stimulating, but too much can affect well-being. 

While stress is not a cause of IBD, there is evidence that too much may lead to a flare-up. So, it makes sense to try and reduce stress where you can. Becoming aware of what is causing you stress is often the first step in tackling it. You may be able to avoid some stressful situations or, if not, plan ahead how you will deal with them. Other ideas for reducing stress are shown below:

• Be realistic about what you can achieve. Don’t take on too much and don’t feel guilty about saying ‘no’.
• Make time for relaxation or leisure each day. You could try deep breathing and deep muscle relaxation exercises, or aromatherapy, reflexology or yoga. Just sitting quietly and listening to music or reading a book can also be very relaxing.
• Take time to eat your meals. Sit down and eat slowly, allowing at least half an hour for each meal.
• Exercise regularly. 
• If you can, take regular holidays. Just a change of surroundings over a long weekend can be as good as a longer break.
• Try talking things over with someone you can trust and share your feelings with. Writing down your feelings in a journal or blog, or visiting a web forum might also help.

If you feel stress is getting on top of you talk to your doctor or nurse about it. You might also find it helpful to see a counsellor. Your GP may have a counselling service or you can find a counsellor through the British Association for Counselling and Psychotherapy. See our leaflet, Counselling for IBD.


Being positive

Managing your condition in the ways suggested here is likely to make you feel more positive. There will probably still be days when you feel down and that life is unfair. You may have flare-ups that are very difficult to deal with. But, don’t lose sight of your achievements and the times you have coped successfully with the problems of IBD. Without expecting too much from yourself, you should find that the more you look after yourself, the more you will be able to enjoy your life.


Getting support

Having support is important for everyone and especially so if you are living with a long-term illness. It can make all the difference in coping with illness and to your quality of life. Living with an ongoing condition can put a strain on relationships with partners, family and friends. You may sometimes feel that no-one around you understands what it is like having to live with IBD. 

Those close to you are more than likely to want to help you, but they may not know how. Being open with them and sharing your feelings and concerns, usually helps. You could also show them some of our leaflets and booklets such as Living with IBD.

You may find it useful to join a local IBD group for support. We have over 70 Crohn’s and Colitis UK Groups spread across the UK. You can find out where your nearest Group is from our office or on our website. If it is difficult for you to attend meetings, you could be in touch with others with IBD through web forums and discussion boards.

There may be times when you feel isolated, upset, or would just like to talk about having IBD. We also provide a supportive confidential listening service called Crohn’s and Colitis Support (0845 130 3344).