Crohn's and Surgery Part 1 - When It's Necessary

This series of articles 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.

How the digestive system works 
To understand the various operations, it can help to get to know the main features of the gastrointestinal (digestive) system and the way it works. As you can see from the diagram below, the gastrointestinal tract, which is also known as the gut, is like a long tube that starts at the mouth and ends at the anus.

The main purpose of the gut is to break down the food we eat so that our body can absorb its nutrients. This begins as we chew and swallow food, and it passes down the oesophagus into the stomach, where digestive juices break it down further over 2-4 hours.

The stomach then empties the food into the small intestine (also known as the small bowel). This has 3 sections: the duodenum, jejunum and ileum. Here the food is broken down into even smaller particles and the useful nutrients are absorbed through the wall of the intestine into the blood stream. The waste products from this process, which include liquid and undigested parts of food, are then pushed into the colon (large intestine or large bowel).

Finally, the colon absorbs the liquid and the left over waste becomes solid faeces (stools). These collect in the rectum and are passed out through the anus in a bowel movement.

How does Crohn’s Disease affect the gut? 

Crohn’s Disease causes inflammation and can affect any part of the gut, although it is most commonly found in the ileum (the lower end of the small intestine) or in the colon. The areas of inflammation are often patchy, with sections of normal gut in between. A patch of inflammation may be small, only a few centimetres, or spread quite a distance along part of the gut. As well as affecting the lining of the bowel, Crohn’s may also go deeper into the bowel wall and cause abscesses or a fistula (see below).

The type of treatment recommended for Crohn’s will depend on the part(s) of the gut affected and on the severity of the symptoms. It may be medical or surgical or a combination of both. For some people, especially children, nutritional therapy (the use of an exclusive liquid diet to treat or reduce inflammation) can be a useful option.

When is surgery necessary? 

Over the last decade advances such as the development of biological drugs have produced increasingly effective medical therapies for Crohn’s Disease. There have also been changes in the way surgery for Crohn’s is now managed, for example extensive resections (removal of diseased sections of the intestine) are now less common. Nevertheless, surgery remains an important treatment option, often in combination with medical therapies, and it is estimated that about 70% of people with Crohn’s will still need surgery at some
point in their lives.

Some of the most common reasons for surgery are outlined below.

Poor response to drug or nutritional treatment 
Sometimes drug and/or nutritional therapies fail to control the inflammation and you may continue to experience symptoms such as diarrhoea, pain, poor appetite, and weight loss. Your doctor may then recommend surgery to remove any irreversibly damaged sections of intestine.

Strictures in the intestine 
The inflammation from Crohn’s may cause scarring, and this can lead to a stricture, or narrowing of the space in the intestine, especially in the small intestine. This can make it difficult for food or waste matter to pass through and may cause a blockage. Symptoms of a stricture include cramping pains, distension or bloating, and, if there is a serious blockage, nausea, vomiting and constipation. You may need surgery to
overcome the narrowing or blockage.

Abscesses or fistulas
Sometimes the inflammation spreads through the full thickness of the bowel wall and forms an abscess (a collection of pus). As the abscess develops it may ‘hollow out’ a chamber or hole. This then becomes a fistula - a channel or passageway linking the bowel to another loop of bowel, another organ such as the bladder or vagina, or the outside skin. About a third of people with Crohn’s develop fistulas (or fistulae), most commonly perianal fistulas linking the anal canal (back passage) to the skin near the anus. Fistula symptoms vary but often include leaks of faecal matter, and can be very distressing. (For more information on fistulas, see our information sheet, Living with a Fistula.) Abscesses can cause pain, fever and feeling generally unwell. Surgery can be used to treat both abscesses and fistulas.

Delayed growth in children
Poor absorption of nutrients combined with steroid treatment can lead to delayed growth in children with Crohn’s Disease. While this is most likely to be managed with nutritional treatment and drug therapy, it can also be helpful to remove any severely damaged sections of the intestine.

Cancer 
If you have severe Crohn’s Disease affecting all or most of the colon and this has lasted for at least 8-10 years, there is a slightly increased risk of bowel cancer. (For more details on this, see our information sheet, Bowel Cancer and IBD.) This may require surgery.

Emergency problems 
Emergency surgery is not often required for Crohn’s Disease, but may be needed if there is severe bleeding from the bowel, a perforation (a hole or tear in the wall of the bowel), for toxic megacolon (very severe disease of the colon), or to treat a bowel obstruction.

Coming up in Part 2: Which are the most common types of operation?

Guest Writer - Steph

We asked Steph if we could use her brilliant blog post from her website Imagine Being Different as we thought it would resonate with a lot of people. Can envisage you all nodding and smiling along to this one too!

Since being diagnosed with IBD, I’ve had some cracking things said to me. These are just a few examples of when humans need to think before they speak.

“Oh so you have IBS.” 

And no I don’t mean the people who say “So its like IBS” because I know that those people, are just a little confused. So I’ll explain it to them and then they know the difference between IBD and IBS.  I’m talking about the people who just shrug you off and think you’re an idiot for not saying IBS properly. Somehow, I think I know the difference considering I was diagnosed with it and have been living with the disease for quite some time.

“You’re always getting sick”

Yes I am always getting sick, because my body is constantly working overtime to try and fight this disease, so it means that when a small cold or infection comes along, it doesn’t have the strength to fight that off too so generally its really easy for me to get sick.

“Why don’t you take some painkillers?”

Why didn’t I think of that?!

“It can’t be that bad/painful if you’re out” 

If I stayed inside every time I wasn’t well, I would never leave the house. I don’t complain or let on how much pain I’m usually in because otherwise I would be moaning all the time and as much as it shouldn’t be this way, I wouldn’t have any friends if I was constantly telling everyone how much it hurt, how long I spent in the bathroom, how little sleep I got because I’m always in the bathroom. I suck it up because if I didn’t, I’d be leading an extremely limited life.

“But you don’t look sick.”

I’m sorry I didn’t realise I had to look sick to be sick. I’m sure if my intestine was on the outside, you’d be able to see all the inflammation, the blood and the ulcers but alas, my intestine is on the inside, I can however show you my poop if you really want to see how sick I am.

I’ve actually had a nurse say that to me after a holiday in Greece. I had to be hospitalised for a week because I was so dehydrated and my pouchitis was absolutely awful. I had of course spent the majority of the time lying in the sun because that was the extent of what I could do and the nurse saw my holiday glow and said the above to me.

If I wasn’t so poorly I’m sure that I would have smacked her round the head with my hospital tray.

I use the disabled toilets on a regular basis because it means I can go to the bathroom in peace and not have to feel embarrassed about any noise or smell. Also, its helpful for when there are queues and I need the toilet badly. When I had a stoma, it was a relief to have the radar key in case I needed to change my bag, however I once had a beautiful person say

“Its disgusting that she is using the disabled toilet when there’s nothing wrong with her.”

I was actually busting for the loo so badly that I was afraid I was going to have an accident. What I should have done is stepped in front of him and pooped my pants. Nothing wrong with me now huh?!?!

Last but not least, my all time favourite...........

“But at least you’ve lost weight.” 

*Facepalm*

Thanks for the double edged sword there. Not only are you completely dismissing my disease but you’re also saying that I was a little bit on the chubby side of life.

The reason I lose weight when I have a flare is because nothing will stay in my system. I am usually so sick that it hurts to eat, so I don’t and anything that I do have will pass through my system in about an hour. My intestine is so inflamed that nothing will be absorbed so not only have I lost weight but I’m also quite malnourished. But hey, its okay, because I’ve lost some weight.

I know sometimes its people making light of the situation, or its just that others don’t know how to deal with it. Sometimes though, when you’re having a really rough time with it all, the last thing you need is someone making a remark like the above.

What amazing things have been said to you?

Schools Need to Download THIS!

Full Information Sheet Here <= this, download this! Now! Do it!

A summary of how staff can help support children with IBD



What is IBD?



The two most common forms of Inflammatory Bowel Disease (IBD) are Ulcerative Colitis and Crohn’s Disease. These are life-long chronic conditions which can cause severe stomach pain, an urgent need to use the toilet, diarrhoea, extreme tiredness, nausea and loss of appetite. IBD can also delay growth and cause extreme thinness. Some children and young people with IBD also have joint pains, eye problems and mouth ulcers.

Symptoms fluctuate and periods of remission can be followed by acute ‘flare ups’. Treatment for IBD often includes courses of drugs which can cause excessive weight gain, a moon-face, spottiness and mood swings. Some children are treated by being put on exclusive liquid diets, and may have a feeding tube. IBD can be very embarrassing to a child or young personand very painful, both physically and psychologically.



​

​Actions that can help:



• Let the child/young person leave and return to the classroom discreetly and without having to get permission whenever they need the toilet. If other toilets are locked or some distance away, let them use a staff toilet.
• Appreciate that they may arrive late at school or for lessons because of an urgent need to use a toilet or because joint pains have slowed them down.
• Be aware that a child/young person with IBD may need to take medication during school hours and/or need extra meal breaks.
• Respect their embarrassment about their condition and their need for privacy; they should decide how much other pupils are told.
• Try to be alert for bullying from others.
• Let them judge for themselves how much sport/PE or after-school activities they can join in - but don’t stop them trying whatever they want to try.
• Don’t exclude pupils with IBD from school trips: talk to them about their needs and try and arrange to meet these, eg with an aisle seat at the theatre or cinema and using a coach with a toilet.
• If a child/young person with IBD is unwell at school, don’t rush to send them home – sometimes they may be able to continue after a rest.
  
• If they have to have time off, either at home or in hospital, encourage the class to keep in touch, for example with cards and phone calls or by email.
• Do not automatically wait for them to return to school before offering schoolwork. They may be able to do some work at home and would like to keep up with others in their class. For example, provide notes on lessons and arrange for work to be set by email.
• Arrange a liaison teacher for the child/young person, their parents and other teachers to talk to.
• Keep in touch with parents about their child’s ongoing or changing needs. If possible, an individual health care plan should be drawn up for each child/young person, which can be passed on as they move up the school.

​

More Information:

If further information would be helpful, contact the Crohn's and Colitis UK Information Line: 0845 130 2233, open Monday to Friday 10am-1pm. There is an answerphone service outside these hours, or you may email
info@crohnsandcolitis.org.uk.

This and all our other information sheets can be downloaded from: www.crohnsandcolitis.org.uk

Universities and Colleges Need to Download THIS!!!

Full Information Sheet Here <= download this! Now! It's important & useful info!

A summary of how staff can help support young adults with IBD



What is IBD?



It is very likely that several students in your university or college will suffer from Ulcerative Colitis or Crohn’s Disease, known collectively as Inflammatory Bowel Disease or IBD. IBD affects about one in 250 people in the UK population, and it is quite common for these illnesses to start in late teens and early adulthood. IBD can make student life more demanding. Some understanding of the physical and psychological effects of IBD will help you to provide the support and encouragement students with IBD often need to achieve their full potential.



The two most common forms of Inflammatory Bowel Disease (IBD) are Ulcerative Colitis and Crohn’s Disease. These are life-long chronic conditions which can cause severe stomach pain, an urgent need to use the toilet, diarrhoea, extreme tiredness, nausea and loss of appetite. IBD can also delay growth and cause extreme thinness. Some children and young people with IBD also have joint pains, eye problems and mouth ulcers.



​

How can Universities and Colleges help?



Respect and understanding



Each individual is unique, and students with IBD are likely to have differing views about how they wish to deal with their condition while at university or college.

​

Access to Disability Services

​

Students with IBD may or may not consider that they have a disability. However, if they have severe UC or Crohn’s Disease they may have needs which mean they might benefit from the support offered by Student Disability Services



​

Accommodation

​

Many students with IBD consider ensuite accommodation a necessity. If this is not available then it helps if the student can have a room very close to a toilet and bathroom/shower. However, this is less satisfactory as without ensuite facilities there can still be the possibility of embarrassing accidents.

​

Other accommodation needs may include:

• living on or close to campus to help minimise travel needs
• convenient laundry facilities
• catering on site, or, alternatively,
• cooking facilities, which may make it easier for some students with IBD to meet their dietary requirements.

​

Departmental Support

​

Many students with IBD find it helpful to have someone within their academic department whom they can to talk to about their IBD and some of the difficulties it might cause. This can apply even if the student has a Study Needs Agreement or something similar.





Common IBD-related support needs

​

Students with IBD often have particular needs or difficulties such as the following:

​

• Urgency Problems
• Lateness
• Medication & Snack Breaks
• Feeling Unwell
• Missing Sessions
• Field Trips
• Coursework Extensions
• Exams
• Extra Curricular Activities



Download the full Information Sheet for how to deal with each of these support needs.





More Information:

If further information would be helpful, contact the Crohn's and Colitis UK Information Line: 0845 130 2233, open Monday to Friday 10am-1pm. There is an answerphone service outside these hours, or you may email
info@crohnsandcolitis.org.uk.

This and all our other information sheets can be downloaded from: www.crohnsandcolitis.org.uk 

Guest Writer - Lindsay "Let's Talk About Sh--"

Let’s just say it – nobody wants to talk about poo.

I mean, they’ll talk sh*t. They’ll say things like, “I just love lemonade, it’s so refreshing!” and, “I was watching Storage Wars, it was totally inspiring!” and, “Wouldn’t it be great if Kate and William were secretly having TRIPLETS?” But they won’t talk about sh*t.

Nobody’ll say, “I had THE most explosive visit to the loo last night,” or, “My haemorrhoids aren’t half playing up,” or, “I’m prepping for a ‘scope this weekend! Wish me luck with the Moviprep!” Well, you might if you’re in an old folks home where everyone’s losing control of their nethers, but as a YOUNG PERSON? It’s social suicide.

And I hate that it is. I’m not saying I WANT to share the intimate details of every ‘motion’ as the IBD team at my local hospital like to call it (first visit, I asked, “Do you mean my poo?”), but it’d be nice if people didn’t recoil in horror when you admit that, actually, your IBD is playing up, you’re in total aggers and you’d quite like to go chill out in the bathroom for a bit, if that’s ok.

It’s a very British thing, I think. This aversion to talking about what goes on in the toilet. Sometimes, though, I like to challenge that, just to make people feel uncomfortable – if I have to be in pain, why not everyone else? I remember saying, quite loudly, at my gran’s once that prepping for a colonoscopy was, without a doubt, hands down, the worst experience of my life. I followed this statement up with: “I swear to GOD, I’ve never pooed like that in my life. I mean, it was everywhere. It was like, ‘Where is this coming from? How is this possible?’” And in that moment, I think my gran might have thrown up in her mouth.

I know it’s unpleasant. But it’s something that I, and thousands of other people, have to deal with. And it can be really awful if you don’t have anyone to share it with. I feel really sorry for my mum – I’ll share a full report with her when I come out of the loo when my Crohn’s is flaring up. Amount of blood, colour, consistency – the works. When I was in hospital once, I had to fill in a ‘stool chart’, a duty I embraced. I eventually had the chart taken away from me because my descriptions were getting a bit out of hand. I might have employed the odd simile to help paint a clearer picture.

I’m not saying that everyone should take a leaf out of my book and make their colleagues listen to a blow by blow account of their recent colonoscopy (I was awake for it, though, and there was NO WAY that experience was going by undocumented) but I do think that being open about the fact that, OK, sometimes something simple like going to the loo isn’t easy might make a difference. Because that’s the worst bit about IBD – you feel like you can’t talk about it.

Britain needs to set its blushes to one side for a minute and realise that maybe it is OK to talk about what goes on behind closed bathroom doors, because for some people? It’s really awful. It’s embarrassing and it’s painful and it’s horrible to deal with. So talk about it. You don’t need to go into colour and consistency, but don’t shy away from it. Don’t pretend you don’t poo. Talking helps. It helps you deal with it, and it helps other people understand.

Maybe if I could set my watch by my toilet trips, if I didn’t have to think about going to the loo or keep markers in my diary when I experience bleeding, I’d be a bit more conservative about bathroom activities too. But, really, we all have to go. Whether it’s normal pooing or not. And a little bit of sympathy, a, ‘God, that sounds awful!’ is a LOT more welcome for us poor IBD afflicted lot than a look of disgust, a curled lip or a full on recoil of horror. You don’t have to understand – just listening helps.

And if you’re the one that’s spent an evening with extra strength painkillers, anti nausea tablets and diarrhoea, having that person there who doesn’t look at you like you have three heads? It makes life a little bit easier. It makes you feel a little less alone.

Fundraising for Crohn's and Colitis UK

You can find out lots about Fundraising in our magazine Action! For the latest edition click here

You can do all sorts of things to raise money to go towards the work of Crohn's and Colitis UK. Click here for our A-Z of Fundraising Ideas. 

It's easy to make a donation to Crohn's and Colitis UK you can:

• make a donation online through our partner site JustGiving
• or use our printed donation form. You can also download a Gift Aid Declaration Form to allow us to claim back the tax you have paid on your donation.  Please click here for the form.
• you can also create a donations page for your own sponsored event through Justgiving.  This enables people to sponsor you online or you can sponsor people already raising money for Crohn's and Colitis UK

When you donate via Justgiving they reclaim the income tax you have paid on that sum on our behalf (where you have declared yourself to be a UK tax payer) and add that to your donation before passing the total to Crohn's and Colitis UK.

Crohn's and Colitis UK pays Justgiving a small administration fee for this service which includes the charge made by the credit card company.

Your help is vital to the work that we do and we hope to hear from you! Contact us on 01727 734485 or fundraising@CrohnsAndColitis.org.uk

Find out where your money goes.

Pregnancy and IBD Part 5 - Delivery and Breastfeeding

If you have Inflammatory Bowel Disease (IBD) and are thinking of having a baby, you may be concerned about how your condition might affect your pregnancy. You may also be worrying about whether having a baby could affect your IBD. The good news is that the great majority of women with Ulcerative Colitis (UC) or Crohn’s Disease (the two most common forms of IBD) can expect a normal pregnancy and a healthy baby.



What sort of delivery should I have?

In most cases, a normal vaginal delivery should be perfectly all right. However, a caesarean section may be recommended by your medical team if you have severe or perianal Crohn’s Disease. You may also be advised to have a caesarean if you have an ileo-anal pouch. 

This is because there is some evidence that a vaginal delivery may lead to an increased risk of faecal incontinence, although other studies suggest this risk may be lower than previously thought. A recent survey among women with IBD who did not have a pouch also found that about one in 10 reported problems with faecal incontinence following a vaginal delivery. On the other hand it may be worth considering that a vaginal delivery avoids surgery and its possible risks.


If you do opt for a vaginal delivery but also have scar tissue around your anus, your doctor may advise an episiotomy (a cut at the opening of the vagina) to prevent tearing. Talk to your gastroenterologist or obstetrician about your own preferences and about any worries you may have.


What about my ileostomy?

Many women with ileostomies have a normal pregnancy and delivery. Your stoma may change shape and become larger as your abdomen expands. It will usually return to normal after the delivery. Occasionally the enlarging uterus can temporarily block the stoma. A change of diet may help – your stoma nurse should be able to advise you on this. You may also find there is an increase in output from your stoma during the third trimester of pregnancy. This too should resolve itself after the birth. Most women with a stoma should be able to have a vaginal birth, but sometimes a caesarean section may be necessary. 

I want to breastfeed. Will my medicines do any harm to the baby?

Breastfeeding is important for the development of a healthy immune system, and is generally recommended. There is no evidence that many of the drugs used to treat IBD are harmful to a breastfed baby, although very few are actually licensed for use while breastfeeding. This may be because little is known about the drug’s long term effect, or because the drug companies are cautious about conducting trials with breastfeeding mothers. So, they prefer to advise against any use of their medications while breastfeeding. If you would like to breastfeed, talk to your doctor and your IBD team about any possible problems from your medication.

• Based on past experience, the 5-ASA drugs such as mesalazine and sulphasalazine are considered by doctors to be safe while breastfeeding. Research has shown that they are transferred into the breast milk, but in very low concentrations.
• Steroids such as prednisolone also appear in low concentrations in breast milk. Again they are generally considered safe, although if you are taking large doses of steroids (over 40mg a day) breastfeeding is not recommended. You can reduce the effects of steroids by waiting for 4 hours after taking a dose before starting to breastfeed.
• Some doctors would not advise breastfeeding by mothers on azathioprine or mercaptopurine, but very little of the active drug is secreted into breast milk. Also, there is no evidence of harm in children of mothers who have breastfed while on thesedrugs. Thus the benefits of breastfeeding may outweigh any small potential risk.
• Recent studies have suggested that infliximab does not pass into breast milk and that it may be safe to  breastfeed while taking this drug. 
• Evidence about adalimumab’s safety is still very limited. The long term effects of these drugs on a child’s developing immune system are also still unknown. Most doctors still recommend that you do not breastfeed during treatment with these medicines or for six months after your last dose.
• Breastfeeding is not advisable if you are taking ciclosporin, methotrexate, mycophenolate mofetil, or tacrolimus. It is also better not to breastfeed while you are on antibiotics such as ciproflaxacin or metronidazole, or the anti-diarrhoeals, loperamide and diphenoxylate.

Our booklet Drugs used in IBD and our specific drug treatment leaflets have more information about all these drugs. 

For all the information contained in this series of articles and more please read our information leaflet Pregnancy and IBD.

What Does Crohn's and Colitis UK Do... ? Research!

Crohn's and Colitis UK provides Information Standard accredited information sheets on a range of topics - most of which have been covered in this blog. Take a look at previous blog posts to see if we've answered one of your questions.

The charity is also there to provide support for people living with IBD and their friends and family. Find out more here...

Crohn's and Colitis UK sometimes commissions research or reviews into particular aspects of Inflammatory Bowel Diseases, both into research and service development issues. The latest report is an updated review of the role of Mycobacterium Paratuberculosis in Crohn’s Disease.  You can read the reports by following this link. If you wish to quote from the reports please provide people with a reference to the full reports here on the main charity website.

List of Research Awards

Research Awards since 2011 are listed in reverse date order (latest year first) sorted by the size of the grant. The total for each year is shown at the end of that year's listings; awards from 2000 to 2011 are also available.

Medical Research Awards for 2012

Dr Jeremy Sanderson - Guy's and St Thomas' Trust Foundation Hospital Optimising the Response to Thiopurine Therapy in Inflammatory Bowel Disease: A Search for Biomarkers Predicting Thiopurine Hypermethylation £59,961 (1 year) Click here for the lay summary

Pro Jonathan Rhodes - Department of Gastroenterology, University of Liverpool Comparison of Combination Antibiotic and Hydroxychloroquine Therapy (Ciprofloxacin, Doxycycline and Hydroxychloroquine) with Standard Therapy (Budesonide) in the Treatment of Active Crohn's Disease £50,993 (2 years) Click here for the lay summary

Dr Julian Knight - Wellcome Trust Centre for Human Genetics, University of Oxford Functional Genomic Profiling of Intestinal Stromal Cells in Inflammatory Bowel Disease Susceptibility £45,070 (1 year) Click here for the lay summary

Dr Elaine Nimmo - Gastrointestinal Unit IGMM, University of Edinburgh Investigating the Importance of NOD2 and TIP60 in the Pathogenesis of Ileal Crohn's Disease £32,000 (1 year) Click here for the lay summary

Medical Research Awards for 2012 total: £188,024 

Crohn's and Colitis UK Research Fund

More than 100 projects have been funded by Crohn's and Colitis UK members since the Research Fund was started in 1984. The research has been mainly into the causes and treatments for Inflammatory Bowel Disease, but in recent years several Social and Psychological projects have been funded. The funds for research have come almost entirely from Crohn's and Colitis UK members own fund-raising and donations, but support from Charitable Trusts and Companies is growing. Our aim is to increase the funds we make available to £500,000 per year by the end of 2007.

If you would like to make a donation to the Research Fund, please click here; if you would like to discuss fundraising for the Crohn's and Colitis UK research Fund, please email Geraldine Tunnicliffe.

Crohn's and Colitis UK's policy has been to fund projects at hospitals and universities throughout the United Kingdom, not just at one centre. Awards are made using peer-review and the projects funded have covered a wide variety of possible causes, including genetics, viruses and bacteria, the immune system and the environment. No single line of research seems to offer a complete understanding of the disease and Crohn's and Colitis UK aims to help research progress in all areas. Crohn's and Colitis UK has been awarded a Certificate of Best Practice in peer-review of research applications by the Association of Medical Research Charities (AMRC).

Summary of Research Awards 1984 to 2006

Crohn's and Colitis UK has produced a summary of Crohn's and Colitis UK research from 2001 to 2006 which can bedownloaded in PDF format. An earlier review covering Crohn's and Colitis UK research from 1984 to 2001 can also be downloaded in PDF format