How Do Young People Feel About Surgery for IBD?

As part of the "Living with IBD"  Research Awards, a grant was awarded to Marion Allison (Consultant Colorectal Nurse Specialist) at Barts Health NHS Trust. They looked into the experiences of young people who face, or have had, surgery.

As she and Dr. James Lindsay (Consultant Gastroenterologist) explain in the film, many young people are fearful of the disruption of surgery despite the potential benefits to their quality of life. Find out how the research was carried out and what arose...

Of course, as the text at the start of the film points out, every patient's experience is different. The researchers give their opinions based on their ongoing research. So don't worry if you don't match what's said - we're all unique!

Guest Writer - Daniel

Me (Daniel Newall) and IBD Surgery Blog – Part 1 Pre Op

So here I am just one week away from my surgery. After two years of struggling and a year of diagnosis there is finally a light at the end of this horrific tunnel. Having had every single drug on offer to try and control the disease nothing has worked and this is the only alternative left. However it’s not that straight forward, I have really made my doctors and consultants earn their money on this one. 

From day one with UC the rare complications that seem to evade others have happened to me from gall stones and pancreatitis to kidney stones, and most recently and most serious, that has even delayed my original surgery pulmonary embolisms (blood clots on the lungs to you and me) each are easily the most painful experiences of my life! So two days before my big op I have to have an IVC filter fitted to prevent anymore colts from travelling to my lungs, brain or heart, which is potentially life threatening. 

The feelings I have now are more of relief and excitement rather than or anxiety and fear, they never really came into it for me. The bag again doesn’t really faze me at this stage I am very accepting of it if it will help me to get my life back. If the bag allows me to go out when I choose, get back to the gym and exercising then I will be very happy. Having been through every procedure that a colitis patient could go through the operation doesn’t really bother me to much (but I’m sure the day before I wont be saying that and wont be getting a wink of sleep). The fear that I do have is that this will not happen and I will still be in pain, still not be able to go out and that it could then be something else.

Growing up in a rugby mad town like Widnes with a Dad who’s played at Wembley all I have ever wanted to do was be involved in rugby either code, having played union for Widnes and representing Merseyside and Lancashire and watching League and the Vikings for over 13 years now, I know now that is almost impossible in terms of playing, however my focus has now switched to coaching something that is very possible and something I am very good at. However year of struggling to make it into university and not participating fully in my course (Sports Coaching Education) is extremely frustrating and is also hampering my studies and stopping me develop and improve as a sports coach. 

Edge Hill University sports staff have been fantastic with me!! Offering me one to one sessions in their own time to help me catch up on things that I'd missed (a luxury that not every student gets). But since mid 2011 there has been no drinking but no hangovers so it’s not to bad. Still not being able to go out and socialise and generally have fun is hugely depressing. An 18 year old lad with his whole life ahead of him and an exciting chapter of it about to begin shouldn’t have to be worrying about disease and hospital visits. What I'd give for the problems of a normal teenager, hangovers, girls all stuff that doesn’t really matter I guess. 

When I was first diagnosed with UC I completely underestimated the disease and how

bad it could get. I found it extremely hard to talk about and didn’t want people knowing about it, however that became almost impossible and as you can tell gradually changed to where I am now the complete opposite and would advise anybody to just come out and tell people it’s so much easier. Telling people made everything a lot easier to be honest, not having to hide things just made it less stressful and who cares what people think anyway nothing I can do about it anyway. Most people don’t judge and just say do what you need and try to help as much as possible. With a fantastic bunch of close friends around me all encouraging me and even been called an inspiration has really kept me going strong. 

Undoubtedly, without the help of my fantastic family taking me to appointments, getting medication and having to live with this disease in their lives (which I feel is something that gets forgotten) I don’t know what I would have done. I don’t think that people without the disease can understand how it makes you feel and the effect that it has on your life. The potential embarrassment, the disgusting feeling which I can only describe and someone trying to ring out your bowel like a wet towel and the urgency is something people don’t understand and I wouldn’t wish it upon anybody.

So that’s that, hopefully in a few weeks I can get back to you with part 2 post op with everything been a success.

Help Us Provide the Latest Information for Students

We're looking for volunteers to comment on new drafts of our Information Sheets for students and universities.

We're really keen to hear your verdict on how easy the guides are to read and if you feel any parts of the text are confusing, missing or need something extra.

Any other thoughts you could offer on your experiences of applying to or being at university would be very helpful for us too. We want to make the content as relevant and useful as possible and we can't do that without speaking to real students like you!

Please get in touch with us if you would like to get involved and are:

• At sixth form college and about to go to university this autumn, or
• A current university student, or
• A recent graduate (completing your course in the last year)

Just send us an email using the link below with brief details of who you are and how best to contact you. We look forward to hearing from you! If you have any problems using the link, the email address to use is alice.flawith@crohnsandcolitis.org.uk subject: Student Comment

Get in touch

Guest Writer Laura

Hey, I’m Laura, I’m 23 and I have ulcerative colitis. I’m going to talk about how I’ve balanced my IBD and my career so far, but first, a bit of back story...

I developed (and was diagnosed with) IBD when I was 19 years old. I was at university studying geography, at the beginning of my second year. IBD definitely affected my time at university but it was more my social life that temporarily suffered rather than my grades! When I had a flare up I stopped going on weekends away with the mountaineering society and would only occasionally go on a night out with friends due to tiredness, long queues in the toilets and embarrassment over my steroidal moon face! The positive side of this was that I had loads of time to stay in and work on my university assignments. I remember doing most of the revision for one particular exam sitting on the loo – good times! Luckily I had really supportive lecturers and friends who were happy to share their notes with me from the lectures I missed.

My super flexible university timetable was great from an IBD point of view but at some point in my final year I realised that this wouldn’t always be the case and soon I would have to get a job and live in the real world! I ended up applying for a job at a charity based in Oxford. I got the job and am still working for the same organisation two years later. When I turned up on my first day, I remember having a number of worries about how my IBD would affect my work. I’m pleased to say that these days I rarely worry about this so I thought I’d share my seven steps to achieving work-IBD zen...

1

      1. Consider your commute to work

I’m currently looking for a new place to live and my number one priority is finding somewhere which is easily commutable from my workplace. It isn’t always possible to live next door to work but a short commute can really help reduce anxiety when your stomach isn’t feeling great. Actually I lied, this is my number two priority, my number one is to find a house that has two toilets.

 2. Consider your place of work

I work in an office which is really perfect for anyone with IBD. I imagine that driving a lorry or working in a customer-facing role might be much more difficult to deal with when you’re having a flare up. When I was particularly ill last year I did have to cancel a lot of meetings but I still got loads of work done because I could chill out in the office or even do my emails from home.

3. Try not to get frustrated with people

If you’re like me, you might occasionally get annoyed with people who don’t understand exactly how you feel. For instance, you might start thinking things like “this meeting is so long, everyone is so insensitive for not realising I feel really tired and my stomach hurts and I might need to run to the toilet any minute!” No-one is psychic, so just ask for a break instead, or see step four...

 4. Let everyone know

The best thing I ever did was tell everyone I work with about my IBD, this has made my life so much easier. It can be difficult to talk about IBD because no one likes to discuss their bowels(!) but it’s so worth it. If you just say you’re ill that’s okay but colleagues will expect you to be feeling better the week after. It can take much longer to get out of a flare up so it’s really important that people know this. You just have to find the right way to do it. For my direct line manager and our HR representative this was a long email explaining all the gory details that can be hard to talk about out loud. For other people in the office, I have perfected a way of casually mentioning my IBD without using the word “bowel” once. I.e. “I have this colitis thing, my colon is inflamed so my stomach hurts and can be a bit dodgy etc etc”. I also enjoy mentioning famous people who have IBD such as Sir Steve Redgrave or footballer Darren Fletcher!

5. Have a laugh with your colleagues

Once you’ve accomplished step four, this is the next thing to do. When I had a flare up last year, two courses of steroids resulted in a pretty epic moon face. This usually gets me down but I was weirdly cheered up by my colleague singing “moooon face dot com” whenever I walked into the office! So much nicer than everyone skirting around the issue.

 6. Take control of your calendar

Once I’d been working in a proper job for a few months, I realised that I could make my calendar work to suit me. This really reduced my IBD-related anxiety. Obviously you need to do this in consultation with your boss. I don’t know how it goes for other people with IBD but when I’m flaring up my symptoms are particularly bad during the morning. So I arranged with my boss that I would work from home each morning and come into work in the afternoons for meetings if I felt like it. Flexi-time means I can have a lie-in if I’ve been unwell during the night too.

 7. Check out Good Desk, Bad Desk

Finally, Crohn’s & Colitis UK have a great website called Good Desk, Bad Desk which has some useful resources and interesting statistics on employment and IBD. I sent a link to this website to some colleagues when I first started and I think it really helped them understand things.

I hope these tips are helpful for people with IBD who are just about to begin their career after school, college or university. I realise that I’m pretty lucky to have great employers who allow so much flexi-time but I think this is becoming more and more common, especially now so much work is done online. It must have been much trickier to keep up with work for people with IBD before the internet existed! If you have any tips of your own I’d love to hear them so please post in the comments section below.

This is so cool...

In the words of Hannibal from the A Team "I love it when a plan comes together"...

Me and IBD is all about young people, as you should know by now! And the blog was set up because we spend lots of time online and it's a great way to share experiences with other people (whether they have IBD or not). So you can imagine how pleased we were to find out that Steph and Gabi have become friends and are writing posts for each others' blogs. 

You may remember from their previous posts for us. Gabi wrote about her experiences trying to break into the fashion world while living with Margaret (her stoma). Steph wrote about Staying Strong with IBD and a list of the silly things that people often say about IBD.

Well, the two girls discovered each other through their posts on Me and IBD and have struck up a friendship. As Steph says, "I instantly felt a connection with her. And not in a, oh we have the same kind of story, kind of connection, but one where I felt we could be good friends."

Gabi said that, "Steph’s blog was one of the first I stumbled upon the day I found out I would be having an ileostomy. Seeing Steph pictured on a beach with faded scars, looking comfortable and confident enjoying a year abroad in Australia made me feel so much better about the impending surgery."

This is such a great thing that these two writers are doing. Spreading the word is so important; realising that you're not alone and sharing tips and inspiration. 



If you would like to write for us or become a media volunteer in order to spread the word through national/regional press, get in touch with us at crohnsandcolitisukpress@yahoo.co.uk

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.

Great Blog Post with Info From Me & IBD

We were delighted to read Jessica's blog post about the information we gleaned from the Me and IBD

Young People survey earlier this year.

You can read what Jessica had to say about when she told her school and later in life, her university about her IBD. So if you want to read about someone else went about this important step in life, click here.

This link will take you to another blog, so be sure to come back to us again soon. :-)

Guest Writer Rachel - Part 3

SO HERE IS RACHEL'S CHALLENGE... AND VIDEO...

The challenge officially started on Wednesday, May 29, exactly four weeks after my surgery. So far I have completed *Drink a whole cup of tea – a horrendous experience and I don’t know how people drink it on a daily basis YUCK;  *Take a life drawing class – a slightly humiliating but eye-opening experience and *Join a Book Club – more fun than I ever imagined and I don’t know why I never did it before.

It’s all about having fun and helping others to understand this illness. If you are feeling down today because of your ostomy or Crohns/UC just stop and think a second of all the things you have gone through, all the pain, all the injections, all the hospital visits, you are a brave and strong person, and better times are ahead. If I can do this SO CAN YOU :-) so wish me luck and why not start your own list and join me on my crazy adventure?

http://adventuresofthebaglady.wordpress.com

Twitter: @thestomabaglady

THE BIG STOMA BUCKET LIST

101 adventures of a bag lady 

SKILLS/ JOB

1.       Learn to speak (and write) French fluently – currently trying and failing

2.       Run a small business

3.       Write a poem and read it at an open mic night

4.       Take a night class in something random

5.       Learn to play the guitar

6.       Get nominated for an award and go to the ceremony in a show stopping dress

7.       Work for the BBC

8.       Get 1,000 Twitter followers – please follow me!!! @thestomabaglady

9.       Learn to say hello in 10 very different languages – trying and failing

10.     Write a column

11.      Learn to parallel park and do it on a main road (thanks Andy!)

12.      Live and work abroad

13.      Host a radio show

14.      Learn to draw a tree properly

15.      Write and illustrate a children’s book

16.      Learn about the economy and stock market

17.      Write a blog with worldwide followers – well I have achieved that but not ticking it off yet

18.      Work for a national newspaper

19.      Have a novel/ short story published

TRAVEL 

1.   (20) Eat snails in Paris

2.   (21) Go to Disney Land and wave a wand in Hogwarts

3.   (22) Visit Prague and see a concert

4.   (23) Walk on the Great Wall of China

5.   (24) Pose for a picture in Times Square

6.   (25) Drink a whole pint (yes a whole one) of Guinness in Dublin

7.   (26) Go to Wales hiking and rent a cottage with hot tub and roaring fire

8.   (27) Get on a random plane to a random place at the airport

9.   (28) Climb the Millennium Dome

10. (29) Take a trip on a gondola in Venice and sing Just One Cornetto

11. (30) Have a night out in Birmingham/Liverpool/Edinburgh/ Manchester

12. (31) Go to an outdoor cinema

13. (32) Camp at a festival

14. (33) Complete 30 Visit England 101 things to do before you die (can’t be in this list) – doing bit by bit

15. (34) Go on a really scary roller coaster

CRAFTS

1.   (35) Design your own clothes/ accessories and make them

2.   (36) make a funky and a sexy stoma bag cover

3.   (37) take a life drawing class – see blog for hilarious story & pics

4.   (38) sell a piece of art

5.   (39) make a Christmas present – which is a quality gift

6.   (40) take a professional photograph

7.   (41) learn to cook – take a cookery class

FOOD

1.   (42) make a perfect cake (three tiers)

2.   (43) eat at a Michelin starred restaurant

3.   (44) throw a themed dinner party

4.   (45) make the perfect soufflé

5.   (46) host a fondue and cocktail party

6.   (47) go strawberry picking and make jam

SPORT and GAMES

1.   (48) Sit on Murray Mound eating strawberries and drinking Pimms

2.   (49) Go to a basketball match and eat a pretzel

3.   (50) Ride a horse

4.   (51) Play a round of golf

5.   (52) Complete an army assault course

6.   (53) Run the Santa Dash

7.   (54) Learn the perfect serve

8.   (55) Cimb the three Peaks

9.   (56) Learn how to play chess

10. (57) Play a full set of tennis

11. (58) Learn how to skip

12. (59) Shoot a gun

13. (60) Drive a classic car

14. (61) Learn how to play poker

15. (62) Walk the Sandstone Trail

16. (63) Compete in the Chester to Liverpool Bike Ride

17. (64) Go Fishing

18. (65) Learn the off side rule

19. (66) Go cheese rolling

CHALLENGES

1.   (67) Volunteer for charity

2.   (68) Raise £1,000 for NACC

3.   (69) Sell something on Ebay (I know lame that I have never done this) – doing now

4.   (70) Read a book every week for six months – read reviews on my blog

5.   (71) Do something just for the hell of it (more outrageous the better)

6.   (72) Go skinny dipping

7.   (73) Get a tattoo

8.   (74) Take part in a protest

9.   (75) Blag your way into a VIP section

10. (76) Be an extra in a tv show or film

11. (77) Sunbathe topless on a beach

12. (78) Wear false eyelashes (I know pathetic but my lashes are false virgins)

13. (79) Bounce down a road on a space hopper

14. (80) Sleep under the stars

15. (81) Live off £10 for a whole week (no cheating)

EXPERIENCES

1.   (82) Be part of a TV audience

2.   (83) Sit in the Commons for a debate

3.   (84) See Michael Buble (I know needs accent) live

4.   (85) Buy a designer handbag or shoes

5.   (86) Wear a stunningly expensive piece of jewellery

6.   (87) Stand for election

7.   (88) Rent a must-have designer handbag

8.   (89) Join a book club – done: read about my cultural evening on my blog

9.   (90) Drink a whole cup of tea (how I go through 25 years without doing this?)  YUCKY BUT DONE

10. (91) Milk a cow

11.  (92) Read Pride and prejudice (I never have!!)

12.  (92) Have a 24hr movie marathon

13.  (93) Wear a onsie in front of others!

14.  (94) See a Broadway show (I know should be in travel)

15.  (95) Jump out of a plane (arrghhh obviously with a parachute)

16.  (96) Ride the London Eye (probably should be in travel)

17.  (97) Get a pen pal – write for a year and then meet up somewhere really cool

18.  (98) Read 50 autobiographies in a year – done about 7

19.  (99) Campaign for something that matters – and win

20. (100) Do something that scares the shit (sorry mum) out of you!

21.  (101) And FINALLY this one has been left open to you guys – think of something cool – not too dangerous please

Anyway…here we go - WISH ME (& Winnie) LUCK!!!