Guest Writer Steph Talks About Fitness

I don’t know about you guys, but fitness is something that I’ve struggled with since being diagnosed with IBD. I’ve recently started running again and I’d like to share my journey with keeping fit and throw in a few things that I have learned along the way.

I never used to struggle with exercise to be honest, I quite liked it when I was growing up and was extremely active. I used to play football in and out of school; I tried various different sports such as cricket, volleyball and even tried my hand at martial arts.

Things slowed down when I went to university, but I would run occasionally and I was doing a very physical Drama course.

That all unfortunately changed when I was diagnosed with Colitis.

 I was bloody tired, and not just ‘I could do with a nap’ kind of tired. I was downright ‘can’t even get out of bed’, kind of tired. It took all the energy I had just to get myself to university, let alone partake in any exercise outside of that.

Where my course was very physically demanding, I fell behind on a lot of my written work. I was run ragged. I didn’t want to seem like I couldn’t do it so I’d push myself to keep up with everyone. I never really let on with my lecturers how bad I had UC, I didn’t want to cause a fuss, but now I wish I sat them down and explained everything that was going on. I’d push myself to exhaustion in class and then by the time I got home I was so tired, I’d curl up in a ball on my bed, written work was the last thing on my mind.

My fitness levels decreased rapidly, I stopped being so active and then came the steroids. I put on so much weight with those bad boys that naturally, I wanted to exercise to get rid of it. But surprise, surprise, I was too tired to do it so not only was I tired, I was fat and I was miserable because I was tired and fat.

Unexpectedly, it was my second operation that spurred me into action. I was so amazed by what my body went through, and how strong it was, that I wanted it to be in the best condition possible for the final operation. It had been through a lot and I wanted to start treating it right.

So. I tentatively started running.

It was so hard because I had lost so much fitness and strength from my previous two ops. I was under no impression that it would be easy but God, I didn’t expect it to be so hard. I started with a run 1 minute walk for 2, repeat 8 times job and I think I actually died.

My lungs were on fire, my legs were screaming and I remember thinking “how the hell are these runners doing it so effortlessly? I mean look at that pensioner, he’s pretty much gliding.”

I stuck by the routine and it was immensely difficult. Some days I missed because I was still recovering. Mentally, it took me a while to get used to the idea that I couldn’t follow the programme exactly because some days my body was screaming no and I had to listen to it. I’m not your average person with normal everyday plumbing so why I was still treating my body like everybody else was beyond me.

Some days I found it to be truly liberating where I’d be running along with a huge smile on my face, not quite believing that I was able to run more than 5 minutes.

I managed to keep up the routine until I had my final surgery. Since then, I’ve unfortunately had a lot of issues with my J pouch and only recently have I been able to pick up running again. At the moment I am managing to run about three times  a week and add in some strength training to boot. I’m currently able to do about 7k and my running average is 5k. It’s been heaps easier these days because my health has improved and now I’m just battling with actually being bothered to do it rather than not physically being able to, which is weirdly a relief!  I’m hoping to pick up a kick boxing class in the future because, and I’ll share a secret with you, I actually hate running!

On my journey I’ve found a few things that I would like to share with you.

If running isn’t your thing, try walking, yoga or a sport. Just try to get your body moving. I picked up Yoga after my final surgery because I was too tired to run and it was an awesome experience. Something I still dabble with today.

-         You are not everyone else. Stop berating yourself for not being able to do everything like the people around you. It’s not a fair comparison and the fact that you’re out there giving it a go, with everything that you have going on is amazing.

-         Use modifications where you can. I can’t do certain abdominal exercises because I’ve been sliced and diced three times through my abdominal wall and so I have to modify exercises. It’s okay to do this, just find what works for you.

-         Watch out for dehydration.  I get dehydrated so easily so I drink a rehydration drink after any physical activity that I do. This is the one that is in Australia but in England I used to take Dioralyte.

  

-         Set small goals and keep a record of what you have achieved. When I started running, it was awesome to see how far I had come and it really inspired me to keep on going.

-          

-         Find your motivation. Mine was to get my body in shape for my final operation to reduce the recovery period. Since then, my motivation has changed, but initially it helped me to get out there on the days that I didn’t want to run.

-         Find what time suits you. I, for love nor money, can’t exercise in the mornings. I’ve tried it and my workouts are ten times harder. Why? I have no idea but I find my best performances are mid afternoon/evening.

I hope the small tips above help in some way. Just try small baby steps and if you have to take a few steps back or even take a break for a little while, recognise that this is okay. We’re only human and the majority of us are dealing with a lot more than most. If at first you don’t succeed, try, try again. Good luck!

Steph has her own blog... "Imagine Being Different"

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.

Ugh Spammers

Spammers trying to drum up business on our blog by posting irrelevant and poorly written comments.

Really rather irritating.

Kindly go away. That is all. Thank you. :-)

Award Winning Band Raising Money for Crohn's and Colitis UK

XOVA (cross-over) are an awesome band from Birmingham who are raising money for Crohn's and Colitis UK with their single Little Lion. They recently one Beat100's "Ultimate Musicians" award and represent 'the sound of 2013'... Ooooh!

The single is available on iTunes and proceeds go towards the charity's work - see the Home page on their website www.xovalive.com.

And here's the reason why they've been so keen to help us out:

Plus, you can go and see them live:

14th July 2013

SIMMER DOWN FESTIVAL

Handsworth Birmingham

3rd August 2013

PEWSEY MUSIC FESTIVAL    

Coopers Field , Pewsey    SN9 5BL    

website: www.pewseymusicfestival.org

15th November 2013

NIJMEGEN THEATRE

Keizer Karelplain 32H,  6511 NH  

Nijmegen    HOLLAND    

16TH November 2013

THE ROBIN 2 [ Supporting THE BEAT ]

Mount Pleasent

Bilston, West Midlands

Guest Writer - Kelly

Kelly is a fitness instructor and personal trainer.

Ulcerative Colitis, exercise and nutrition – a personal battle

This blog is something that is very close to my heart.  I have suffered from Ulcerative Colitis since 2006, it is

a bowel condition which along with Crohn’s Disease affects around 1 in 250 people in the UK.  Since having this condition it has caused problems with my exercise regime and as a fitness professional this has also affected my work.  The challenges to anyone suffering from Crohn’s Disease or Ulcerative Colitis (the two inflammatory bowel diseases- IBD) of just simply maintaining fitness levels, never mind competing or achieving sporting success are the symptoms of fatigue, diarrhoea, joint problems and severe pain.

I am writing this blog to attempt to reach out to fellow sufferers of IBD and to explain that a healthy, fit lifestyle can be maintained and you can also train probably harder than you thought.  When I was first diagnosed with colitis I found talking about it difficult and I was embarrassed but now I want to help people so I will explain how exercise makes me feel, what types of training I do and how I had to adjust my diet to suit my condition.  I have also found a copy of a sport and fitness survey done by Crohn’s and Colitis UK which gave me an insight into how other people with IBD cope with sport and exercise.  IBD does not stop sportsmen and women, there are a few Olympians, sporting champions and sporting greats that suffer from IBD and have went on to some success in their sporting career managing their conditions well.

•          Sir Steve Redgrave – 5 time Olympic gold medal winning rower
•          Darren Fletcher – Manchester United and Scotland footballer
•          Lewis Moody – former England rugby team captain
•          Russell Martin – Scottish international and Norwich City footballer
•          Henry Tosh - World champion power lifter
•          Ali Jawad – Para-Olympic weight lifter
•          Rick Parfitt Junior – Racing car driver

Three members of my family have suffered/suffer from ulcerative colitis however they say that it is not a genetic disorder.  As I said, I was diagnosed in 2006 and had a very rough two years with the condition in the beginning to the point I could not even gain the strength to change my clothes at 26 - my mum basically had to look after me.  I lost a lot of weight, became very weak, ill and lost a lot of confidence.  

My IBD has seen me hospitalised 2 times since diagnosis and I am on tablets for the rest of my life.  However in May 2013 I have been in remission for two years so I think I am now in a ‘good’ relationship with my condition.  When I was first diagnosed with colitis I was unsure whether I could train to the same level I had done before or what to eat to keep my condition under control I wasn’t really given a lot of information on the subject and over the last 7 years it has been a hell of a lot of trial and error.

So this is my attempt to reach people who suffer from IBD who are unsure of exercise and what to do.  If you don’t suffer from IBD but know of someone who does I would be very grateful if you could forward this or share this as I would like to help anyone I can.

The survey which I read showed that it can be life limiting for people who were previously fit and active who are suddenly faced with this serious condition be it Crohn’s or Colitis which may require surgery and a huge reduction in their fitness levels.  They concluded that being placed under external constraints such as lack of toilet facilities further reduces overall well being and forces them to give up preferred sports and fitness activities, however I have not found this to be the case. 

I completely understand that everyone’s condition is different but I still take part in outdoor activities like 10k’s, half marathons and I embarking on triathlon training so most of my events are outside.  Now I have done half marathons before where you will find me in the queue for the toilet before during and after the run so sometimes getting a PB with IBD does not happen because your time increases waiting on the toilet.  But I want to reassure anyone who wants to take part in outside activities and sports that it can be done and your condition should not put you off.

As I mentioned I am about to embark on training for triathlons with the ultimate goal to finish an ironman in 2-3 years.  Now I will never say that my condition prevents me from taking part in events or training, however I feel the side effects can hinder me slightly.  Severe fatigue, achy joints, the need for the loo and anaemia are probably the most frequent side effects.  I mostly train in a gym so I can be near a toilet when I need and I try to not think of needing the loo, if I am fatigued then I will try and rest more in my training, the achy joints well at the moment I still have no ‘cure’ for that unfortunately and I take spa tone for my iron levels as I cannot tolerate iron tablet plus I eat a lot of iron rich foods.  However I still aim to train 4-6 days a week on a good week and some of that is in the gym, the pool or outside running or cycling. 

I cannot stress enough that IBD should not affect your fitness and exercise in your life, you just have to see what works for you and how your body adapts to it.  I would recommend keeping a diary about your condition, what you eat and drink, exercise and how you are feeling.  Try and keep that for a few months, write in it every day and you will get an understanding of what works for your body and condition.

Another reason not to give up on exercise and fitness is it makes you healthy.  I feel if I train my symptoms are great, I have never had a flare up when I am exercising and when I am feeling fit it is usually when I am feeling unwell or stressed.  But I will point out that over training, injury and too much training are stressors for me and they will bring on feeling unwell which may lead to flare ups.  I also eat better when I exercise right and this helps control my condition.  I feel strong and fit and I also have more energy so overall exercise really helps my colitis.

In the survey they asked whether people who have IBD currently took part in activity and the majority (66%) agreed that they did but a third stated that they did not.  The people who said they did exercise where then asked how often they managed to exercise, their answers are below:

•          Daily = 32% 
•       Weekly = 57%  
•       Monthly = 5% 
•       Less Often = 4% 
•       Hardly Ever/Never = 1%
•       No Answer = 1%

So as you can see IBD sufferers do manage to do some form of activity and mostly weekly or daily.

Also the survey asked what type of exercise they take part in, the answers are below:

•               Walking = 16%
•        Jogging/Running = 15% 
•        Gym = 13%
•        Swimming = 12% 
•        Cycling = 9% 
•        Zumba = 6%
•        Yoga = 5%

Some of the above exercises can be outside so exercise does not always have to be near a toilet for you to take part.  Some IBD sufferers I know regularly run and go to the gym and walk dogs.  So you don’t have to train as daft as me with weights, swimming, cycling and running you can go for a walk, play golf etc. but what I would recommend is, if you were well enough bring exercise into your life and your IBD symptoms will probably be more controlled.

When the participants of the survey where asked how IBD has affected their fitness 50% stated that their fitness levels had been greatly affected by IBD and 38% said that IBD had affected their fitness levels very little.  On a positive not 12% stated that IBD had not affected their fitness.  I feel that it is very individual with your condition and your exercise so again I would say try it out and see if it works for you.  The benefits of exercise are too good to miss out on with fear of triggering a flare up.  On a very positive side to this a resounding 72% of the survey stated that exercise makes them feel better but 23% said that exercise can make them feel worse and 7% gave no answer.

When asked why does exercise make you feel better the participants of the survey answered as follows: 46% said that sport and fitness activities made them feel better about themselves and improved their general well being and confidence, 12% said it boosted their energy levels, 9% felt fitter/healthier and 12% stated that exercise helped improve their IBD symptoms, helped their weight control (steroids for IBD treatment can cause weight gain) and improved their sleep.  Also 4% said that sport/fitness gave them a focus other than their condition and another 4% said they felt ‘normal’ when taking part in sport.  I completely agree with the last statement exercising gives me a release from my life and my condition.

Other interesting questions/answers from the survey:

Why does exercise make you feel worse?

For the 204 people who stated that exercise made them feel worse, the key issues were extreme fatigue (41%), exercise increases their need for the toilet (12%), causes increased stomach pain (17%), increases joint pain (7%), their IBD slows their recovery times (5%) and exacerbates their IBD symptoms (11%).  I have said that joint pain is one of my symptoms that is always there when exercising but I feel changing my exercises/sport helps that, my colitis does slow my recovery down and makes my body ache longer than for ‘normal’ people but through proper nutrition, recovery days and keeping an eye on my training load I can work around this.  With regards to the needing the toilet, most IBD sufferers can relate to this, I have found that if you keep thinking about it you will need the toilet, I just try and think of different things and that usually works, however it has taken me a long time to get into the mind over matter strategy with the toilet and my colitis but if you work at it, it may work for you.

With regards to diet I have found over the years that if I eat an almost gluten and oats free diet I feel 100% better.  My diet is based on vegetables, salad’s, some fruits, eggs, beans, fats, limited dairy and lentils washed down with plenty water.  I find that grains, oats and gluten make you bloated and uncomfortable anyway so I feel as an IBD sufferer I don’t want to feel uncomfortable in the bowel region and possibly trigger my symptoms through poor food choices.  I also hardly drink as this just aggravates my colitis.  Again as with exercise its finding what suits you and your condition.  However with a good healthy diet you will reap the benefits of healthy skin, healthy weight and you will look and feel good and you should be able to control your IBD better too.

I hope this has helped any IBD sufferers if they were concerned about exercise, nutrition and the effects on their IBD.  An exercise regime and healthy eating plan will give you a better life and as a by-product should help your IBD.  Just go out and find out what works for you.  I feel the worst thing you can do is to not try to exercise or change your diet for the better.  If you have any questions please feel free to comment.

Email:                    k.mccraw@fettes.com

Facebook:           www.facebook.com/KellyMccrawForeverPersonalTraining

Twitter:                @kellymccraw

Survey mentioned and answers/questions derived from Crohn’s and Colitis UK – Inflammatory Bowel Disease (IBD) Sport and Fitness Survey Overview and Key Insights – May 2012

View the full report here

Guest Writer - Beth

Gap Year Travel with IBD

So anyone else dreamed of that elusive gap year adventure abroad?

I use the word ‘elusive’ because more than just perhaps money or commitment issues, for an IBD sufferer a trip of lifetime will seem even more elusive, or perhaps even impossible.

I was diagnosed with Crohn’s disease in 2004 and felt although not a ‘death sentence’ that it was the end of any adventure or dreams I wanted to achieve. However, over the years I have improved and actually gone into remission. I managed 3 years of university, which although there were some tough times, I’m so proud I did that. Once I graduated and realised that dream of a degree, I wondered if that gap year dream would be achievable too.

My boyfriend quit his job and so did I. With savings and inheritance money we went ahead and booked some flights to Bangkok, and planned a trip around South East Asia for 3 months. After the initial rush of excitement suddenly the fear snuck in:

      What if I have a bad flare up?

                  What if I can’t get necessary drugs?

                              What if I get food poisoning?

                                              What if, what if, what if??!

After several panicked and tearful conversations with family and friends they reassured me I could do this and not to let the fear of the condition flaring to stop me. I researched the area thoroughly with didn’t help my fear as it seemed certain countries like Laos and Cambodia have very limited medical facilities. Suddenly I was wondering why had I chosen hot, exotic and poor countries to explore?

Over the next few months of planning I collected all my medicines, with extra (over 800 tablets!)  And researched my travel insurance thoroughly, insuring they covered my Crohn’s condition. I packed lots of over the counter medicine like re-hydration sachets, diarrhoea relief tablets etc. until it seemed like my bag was bursting. I got a letter from my doctor to ensure I could show border controls what all this medication was for. I was terrified of them confiscating it or something.

So finally the day came when we left. As we boarded the first 7 hour flight my boyfriend squeezed my hand and reminded me I’m not alone in this and he’d look after me. Truth is I was so terrified I don’t think I could have boarded without him and his reassurance.

Those 3 months came and went so fast I almost don’t believe it happened.  Throughout my time there my condition varied. Amazingly enough, after a few weeks of immersing myself into oriental/Asian cuisine I felt a noticeable difference. No bloating. No gas. No diarrhoea. It felt so good to feel comfortable after a meal. I ate pretty much only noodle, rice and stir fry dishes. The portions were small but surprisingly filling. I had very little stomach aches. I’d have the occasional day where it was bad but looking back now that seemed to be when we’d had western food. This could be a coincidence of course but I think I’ve established some food triggers now that I never had before.

Because I was having such an incredible time doing exciting things each day I hadn’t initially noticed the difference.  But my boyfriend remarked on how active and healthy I seemed. It was true, I felt less lethargic and lighter. The humidity and travelling took an effect, with 52 mosquito bites on one leg and cuts and bruises, I may not have looked the healthiest but I felt a real difference. What an absolute surprise.

However the worst did happen. I got food poisoning. I guess in some ways it was inevitable in humid countries that don’t understand the concept of health & safety. We did try and choose our food places carefully but that was almost impossible. I got food poisoning in a tourist café that was on a pre-arranged tour. And yet I’d previously been eating street food with no problem. So it’s a hard thing to judge.

Anyway, we got a 6 hour coach journey across the Cambodian border and gradually I started to have unbearable but unfamiliar stomach pain. I felt faint and so nauseous. By the time we arrived at our hostel I collapsed on the bed in agony. Tears streamed down my face because I was so frightened what this meant. I understood that because of my Crohn’s, a normal 48 hour food bug could turn into something much much worse. Worst still, we’d just left the capital of Vietnam where the medical facilities were good, into the poorest country we were vising. I couldn’t believe the odds. I lay on the bed clutching my stomach with my head over the bin bracing myself to throw up. I was sweating and uncomfortable.

The temperature was now somewhere near 47 degrees with no air con and the knowledge I’m in one of the poorest countries in Asia. In that moment I would have done anything to have been home.  Thankfully my boyfriend went on a hunt for medicine and after an hour or so he returned with some medicine he’d managed to get from a pharmacist. There was hardly any English on the packet but my boyfriend seemed convinced the man understood my problem (even if it was acted out to him as he had barely any English skills).  Over the next 24 hours the pain stayed the same and I just tried to keep sleeping. Eventually, with the aid of the medicine the symptoms seemed to ease off. By the third day I felt well enough to move to different accommodation. We spent the day taking it easy. The next day it seemed to have passed and I cannot describe the relief.

Although more nervous after this incident we continued to enjoy our last month back in Thailand and thankfully without any more stomach problems.

Since returning home I discovered I’d lost a stone in weight but I looked good for it. And of course once back into bad habits here like snacking, chocolate etc I’ve slowly put the weight back on. Actually since being back in the UK, the food tastes so fatty and rich to my new palette and I realised new reactions to wheat. So in fact it was good to discover these.

In conclusion that trip has completely changed my life in so many ways. It’s changed my confidence, my awareness, my diet, and much more. Besides being the best thing I’ve ever done it also signifies so much. I did it and I will always be proud that I took the plunge. If I can do something as exciting, challenging and different as this trip, I can do anything. This disease does not have to stop me doing anything.

I would advise several things if you consider taking a trip:

•    Research your insurance thoroughly and actually speak to your provider and discuss your concerns, insuring you are covered for your illness. Take all details with you.
•    Take some over the counter medicines (like re-hydration tablets and vitamins) to help keep your health up.
•     Bring not only the required amount of medication but EXTRA.
•     Carry a letter explaining all your required medicine and why you have it.
•     Do some research of medical facilities available in the areas you’re visiting before going (just in case) and check the prices.

-   Take extra money if medical assistance is required. Although you’ll get the money back from your insurers, you have to pay yourself initially. So make sure you have some available.

-    I would personally travel with someone and make sure they know the details of your condition. But this is just a personal preference.

Some of these things I didn’t need in the end, but it will vary massively from country to country and with circumstance changes. So I would recommend having these things in place just in case.

Otherwise my parting message is plan, prepare and take the leap of faith. You’ll always regret what you didn’t do more than what you did. If you are nervous, or still going through rough uncertain patches of the disease, perhaps start by visiting more western countries, or for short trips and see how they go for you.  Good luck and safe travelling!

Colitis and Surgery Part 4 - What to Expect

This information is about the types of surgery that may be needed in the treatment of Ulcerative Colitis (UC). You may also find other Crohn’s and Colitis UK information useful, especially our booklets Ulcerative Colitis and Living with IBD. Most of our publications are available from our website: www.crohnsandcolitis.org.uk.

What can I expect to happen before the operation?

If the surgery is elective (planned), you should have time to talk through the options with your health care team and to discuss the best way to prepare for the operation. It is important that you are as fit as possible before having the surgery. So, if you are seriously underweight you may be advised to take extra nutrients, perhaps in the form of a special liquid feed as a supplement to your diet. If you smoke, you will be advised to stop.

Exact procedures vary from hospital to hospital, but you will probably be asked to attend a pre-admission clinic for a health check a week or two before your admission. During this appointment a doctor or nurse will examine you and ask about your general health as well as your UC symptoms. They will take a blood sample for routine tests and may send you for other tests such as chest x-ray or ECG (a tracing of your heart rhythms). This information will help the anaesthetist plan the best anaesthetic for you.

A surgeon will meet you to discuss your operation and you may be asked to sign a consent form at this stage (or this may not happen until you are actually admitted to hospital). It is important that you fully understand what operation is planned and what are the likely benefits and side-effects. Your surgeon should also explain the complications that can happen as a result of your surgery. Do take this opportunity to talk through the details of your operation and to ask questions if you feel you do not understand anything, or would like more information. You may also meet a colorectal nurse, and, if you are going to have a stoma, a stoma care nurse, who will also be able to help with any queries you may have about the operation or your after care.

Once in hospital you may expect something like the following to happen:

1. A doctor will examine you and a nurse will check your temperature, blood pressure, pulse and weight. This information can then be compared with readings taken after the operation.
2. If you have not already done so, you will be asked to sign a consent form to confirm that you agree to the operation. If anything is unclear, ask for it to be explained. If you don’t want the surgery to happen you have a right not to sign the form
3. If you are going to have a stoma, the stoma care nurse will visit you again to talk through what this may mean for you and to make sure you have all the information you need. She may make a mark on your stomach where the surgeon will create the stoma.
4. An anaesthetist will visit you to talk about how you will be given the anaesthetic and how your pain will be controlled after the operation.
5. You may need to take a ‘bowel preparation’ (a strong laxative) the day before the operation. This is to make sure that the bowel is completely clean.
6. You will usually be given a pair of white support stockings to wear during and after the operation; you may be given a small injection as well. Both these measures help prevent blood clots in the legs.

What can I expect to happen after the operation?

Immediately after the operation you will be moved into the recovery room, or, in some hospitals, into the HDU (high dependency unit) so that your condition can be closely monitored. Once you begin to recover you will be moved back to a general surgery ward.

You will be given some sort of pain relief, perhaps through an epidural (a fine tube attached to your back) or intravenously (through a drip in your arm, into a vein). The delivery of the pain-killing drugs may be automatic, or you may be able to control it by pressing a hand-held button. You may also be given medication to control anaesthetic side effects such as nausea and vomiting.

There may be several other tubes coming out of your body, including a drip to provide fluids, a catheter to drain and measure urine, and a drain tube near the operation wound or from your back passage. Some people will also have a nasogastric tube (a tube passed down through the nose into the stomach), which is used to remove secretions (fluids) or gas that may collect in your stomach after surgery. These tubes will be removed over the next few days and you should be able to start taking painkillers by mouth if you need them. You may find your throat feels sore from the breathing tube used during the operation. Gargles can usually help ease this.

To help get your circulation moving, you will be encouraged to get out of bed and into a chair as soon as you are able – probably within a day or so. As you continue to recover, a physiotherapist may visit you to show you some simple leg and chest exercises.

Depending on the type of surgery performed, some people are allowed to start drinking water within hours of their operation; others, however, will be asked to wait until bowel sounds are heard and they have begun to pass wind. So it may be a few days before you can start taking fluids and you may need to build up from small sips to drinking normally. You will then be encouraged to start eating a light diet.

If you have a stoma, the stoma care nurse will show you how to look after it and how to manage your stoma bag. If you have any problems, don’t hesitate to ask for help.

Some people have found that a few days after the surgery they do not feel as well as they did immediately after the operation and can feel quite depressed. This is probably a reaction to the ‘shock’ of the operation and this experience usually passes.

How long will I need to stay in hospital?

This can vary quite a lot according to the type of operation needed and also from individual to individual. Most people stay in hospital for between one and two weeks, although you may be allowed to go home earlier and have any stitches or clips taken out at home or in an outpatients clinic. In general, hospital stays for elective (planned) surgery tend to be shorter than for emergency surgery, as people having emergency surgery are usually more unwell and may have a more complicated recovery.

How long will it take to recover?

When you first go home you will probably find that you feel weak and tire easily. You may not feel like doing much. On the other hand, you should no longer have the symptoms from your UC, and, as you recover, should begin to feel a lot better than before the operation.

If you have a stoma bag, it may take time to learn how to manage it. Talk to the stoma care nurses if you have a problem or need more information. Specialist nurses should also be able to help with advice about living with an ileo-anal pouch. Patient associations such as the Ileostomy and Internal Pouch Support Group (0800 018 4724 www.iasupport.org), or the Colostomy Association (0800 328 4257 www.colostomyassociation.org.uk), can also be helpful.

As time passes you will regain your strength and stamina, and will probably be able to return to your normal daily activities including sports and hobbies. Everyone is different, however, and how long this takes can depend not on only the type of operation you have had, but also on your age and your general state of health. During your recovery it is important to strike a balance between trying to do more each day and over-doing things. Listen to your body and only do as much as feels comfortable.

A gentle exercise program may help speed up your recovery and you will probably be given some advice on this by the hospital or your IBD team.

Most people are advised not to do any heavy lifting or housework like ironing or vacuuming for a period of time following their operation. You should not start to drive again until you feel strong enough and comfortable enough to control a car properly, including making an emergency stop if you need to. This may take several months. Your car insurance may not cover you if you drive before you are fully recovered.

When you can return to work will also depend on the operation you have had, your general health, and the type of work you do. People with jobs that involve a lot of physical effort may need more time off than those with less active jobs, although even sitting at a desk all day can be very tiring after surgery. On average, it probably takes about 2-3 months before most people feel able to return to work. Working part- time for a while, or only taking on lighter duties, can often help the recovery process.

How might an operation affect my everyday life?

Diet
You may find that once you have recovered from the surgery you are able to eat larger meals and a wider range of foods. Eating a balanced and nutritious diet should help your recovery. You may be advised to follow a low residue diet for a while: the hospital will give you details of this. People with a stoma or pouch do not generally need a special diet, although it can help to make a point of eating regular meals, and to take extra fluids and salt. You may also prefer to avoid certain foods. The hospital dietitian should be able to advise you. Our booklet Food and IBD also has further information on diet and Ulcerative Colitis.

Sex and Pregnancy
Most people are able to resume sexual activity after surgery for Ulcerative Colitis, although it may take a little time, perhaps several months, to recover fully. In men, operations on the rectum can occasionally lead to impotence. This may resolve itself – if not there are several aids and medicines which can help. There is some research to show that both of the main operations most commonly carried out for UC, but especially IPAA surgery, can affect fertility in women. Couples who may want to have a family after UC surgery should discuss this with their consultant. Doctors also usually recommend that women with a stoma or pouch give birth by caesarean section. (For more information see our information sheets Fertility and IBD and Pregnancy and IBD.)

Emotional Reactions
Everyone reacts to surgery in their own way and some people experience a range of emotions, both before and then after an operation. You may feel apprehension, doubt, acceptance, relief, confidence, a sense of well-being and perhaps even some disappointment. It is not uncommon for people with an operation scar or a stoma to feel depressed about their changed body image. This can be a time of worry for family members as well.

You may find it helpful to talk to someone about these feelings. Stoma care and IBD nurses can be an excellent source of support. If you would like to speak to a professional counsellor, check whether your GP has a counselling service. There may also be a counsellor attached to your IBD team or hospital. (See our information sheet Counselling for IBD for more details on how to find a counsellor.) Ostomy Lifestyle: 0800 7314264 www.ostomylifestyle.org.uk

At Crohn's and Colitis UK we have a confidential supportive listening service, Crohn’s and Colitis Support, staffed by trained volunteers with personal experience of IBD. Trained staff on our general Information Line can answer queries on any aspect of IBD. 0845 130 3344 or info@crohnsandcolitis.org.uk

We also have available a list of 10 questions to ask your surgeon based on those recommended by the American College of Surgery.

Crohn's and Surgery Part 4 - What to Expect

This information is about the types of surgery that may be needed in the treatment of Crohn’s Disease. You may also find other Crohn’s and Colitis UK information useful, especially our booklets, Crohn’s Disease and Living with IBD. Most of our publications are available from our website: www.crohnsandcolitis.org.uk

What can I expect to happen before the operation?

If the surgery is planned or elective, you should have time to talk through the options with your health care team, and to discuss the best way to prepare for the operation. It is important that you are as fit as possible before having the surgery. So, if you are seriously underweight you may be advised to take extra nutrients, perhaps in the form of a special liquid feed as a supplement to your diet. If you smoke, you will be advised to stop. Smoking has been shown to be one factor that increases the risk of needing surgery again.

Exact procedures vary from hospital to hospital, but you will probably be asked to attend a pre-admission clinic for a health check a week or two before your admission. During this appointment a doctor or nurse will examine you and ask about your general health as well as your Crohn’s symptoms. They will take a blood sample for routine tests, and may send you for other tests such as chest x-ray or ECG (a tracing of your heart rhythms). This information will help the anaesthetist plan the best anaesthetic for you.

A surgeon will meet you to discuss your operation, and you may be asked to sign a consent form at this stage (or this may not happen until you are actually admitted to hospital). It is important that you fully understand what operation is planned and what the likely benefits and side-effects are. Your surgeon is also likely to explain to you about the complications that can happen as a result of surgery. Do ask questions if you feel you do not understand anything, or would like more information. You may also meet a colorectal nurse, and, if you are going to have a stoma, a stoma care nurse, who will also be able to help with any queries you may have about the operation or your after care.

Once in hospital you may expect something like the following to happen:

1. A doctor will examine you and a nurse will check your temperature, blood pressure, pulse and weight. This information can then be compared with readings taken after the operation.
2. If you are going to have a stoma, the stoma care nurse will visit you again to talk through what this may mean for you, and to make sure you have all the information you need. She may make a mark on your stomach where the surgeon will create the stoma.
3. If you have not already done so, you will be asked to sign a consent form to confirm that you agree to the operation. If anything is unclear, ask for it to be explained. If you don’t want the surgery to happen, you have a right not to sign the form.
4. An anaesthetist will visit you to talk about how you will be given the anaesthetic and how your pain will be controlled after the operation.
5. In some cases you may need to take a ‘bowel preparation’ (a strong laxative) the day before the operation. This is to make sure that the bowel is completely clean. In other cases, you will not need a laxative but may be asked to have an enema to empty the last part of the bowel.
6. You will usually be given a pair of white support stockings to wear during and after the operation, and you may be given a small injection as well. Both these measures help prevent blood clots in the legs.

What can I expect to happen after the operation?

Immediately after the operation you will be moved into the recovery room, where your condition can be closely monitored. Once you have regained consciousness you will be returned to the ward.

You will be given some sort of pain relief, perhaps through an epidural (a fine tube attached to your back) or intravenously (through a drip in your arm, into a vein). The delivery of the pain-killing drugs may be automatic, or you may be able to control it by pressing a hand-held button. You may also be given medication to control anaesthetic side effects such as nausea and vomiting.

There may be several other tubes coming out of your body, including a drip to provide fluids, a catheter to drain and measure urine, and a drain tube near the operation wound. Some people will also have a nasogastric tube (a tube in your nose to keep your stomach empty). These tubes will be removed over the next few days and you should be able to start taking painkillers by mouth if you need them. You may find your throat feels sore from the breathing tube used during the operation. Gargles can usually help ease this.
Depending on the operation you have had, you may be encouraged to get out of bed and into a chair the day after, or in some cases, the same day. This is to help get your circulation moving. A physiotherapist may visit you to show you some simple leg and chest exercises.

Also depending on the type of surgery performed, some people are allowed to start drinking water within 12 hours of their operation; others however will be asked to wait until bowel sounds are heard and they have begun to pass wind. So, it may be a few days before you can start taking fluids, and you may need to build up from small sips to drinking normally. You will then be encouraged to start eating a light diet.

If you have a stoma, the stoma care nurse will show you how to look after it and how to manage your stoma bag. If you have any problems, don’t hesitate to ask for help.

Some people have found that a few days after the surgery they do not feel as well as they did immediately after the operation, and can feel quite depressed. This is probably a reaction to the ‘shock’ of the operation, and this experience usually passes.

How long will I need to stay in hospital?

This can vary quite a lot according to type of operation and also from individual to individual. Most people stay in hospital for between one and two weeks. The average stay is about 7 – 10 days after the operation, although you may be allowed to go home earlier, and have any stitches or clips taken out at home. In general, hospital stays for elective or planned surgery tend to be shorter than for emergency surgery, as people having emergency surgery are usually more unwell and may have a more complicated recovery.

How long will it take to recover?

When you first go home you will probably find that you feel weak and tire easily. You may not feel like doing much. On the other hand, you should no longer have the pain from your Crohn’s, and, as you recover, should begin to feel a lot better than before the operation.

As time passes you will regain your strength and stamina and will probably be able to return to your normal daily activities, including sports and hobbies. Everyone is different however, and how long this takes can depend on not only the type of operation you have had, but also your age and your general state of health. During your recovery it is important to strike a balance between trying to do more each day and over-doing things. Listen to your body and only do as much as feels comfortable.

A gentle exercise program may help speed up your recovery, and you will probably be given some advice on this by the hospital or your IBD team.

If you have a colostomy or ileostomy and a stoma bag, it will take time to learn how to manage it. Talk to the stoma care nurses if you have a problem or need more information. You may also find patient associations like the Ileostomy and Internal Pouch Support Group (0800 018 4724 www.iasupport.org), or the Colostomy Association (0800 328 4257 http://www.colostomyassociation.org.uk/) helpful.

Most people are advised not to do any heavy lifting or housework like ironing or vacuuming for a period of time following their operation. You should not start to drive again until you feel strong enough and comfortable enough to control a car properly, including making an emergency stop if you need to, and this may take several months. Your car insurance may not cover you if you drive before you are fully recovered.

When you can return to work will depend on the operation and the type of work you do. People with jobs that involve a lot of physical effort may need more time off than those with less active jobs, although even sitting at a desk all day can be very tiring after surgery. In general, following a resection you may expect to be off work for about four-six weeks; after an ileostomy, for about two months.

How might an operation affect my everyday life?

Diet
You may find that once you have recovered from the surgery you are able to eat larger meals and a wider range of foods. Eating a balanced and nutritious diet should help recovery, and is particularly important if you have had sections of your small intestine removed. Some people with Crohn’s have difficulty in absorbing fat from their food, especially after resections, and if you have had your terminal ileum removed you may need to have vitamin B12 injections. People with a stoma do not generally need a special diet, although it can help to take extra fluids and salt, and you may prefer to avoid certain foods. The hospital dietitian should be able to advise you. Our booklet, Food and IBD, also has further information on diet and Crohn’s Disease.

Sex and Pregnancy
Most people are able to resume sexual activity after surgery for Crohn’s Disease, although it may take a little time, perhaps several months, to recover fully. In men, operations on the rectum can occasionally lead to impotence. This may resolve itself – if not, there are several aids and medicines which can help. There is no reason for women not to consider pregnancy after having surgery for Crohn’s, although if you have a stoma a caesarean section may be recommended. See our booklet Pregnancy and IBD for more information.

Emotional Reactions
Everyone reacts to surgery in their own way, and some people experience a range of emotions both before and then after an operation. You may feel apprehension, doubt, acceptance, relief, confidence, a sense of well-being and perhaps even some disappointment. It is not uncommon for people with an operation scar or a stoma to feel depressed about their changed body image. This can be a time of worry for family members as well. Ostomy Lifestyle: 0800 7314264 www.ostomylifestyle.org.uk

You may find it helpful to talk someone about these feelings. Stoma care and IBD nurses can be an excellent source of support. If you would like to speak to a professional counsellor, check whether your GP has a counselling service. There may also be a counsellor attached to your IBD team or hospital. (See our information sheet, Counselling for IBD, for more details on how to find a counsellor.)