Many people think surgery is the last option, but that isn’t true. Surgery is offered when doctors think it will help your symptoms. Some people may be offered both medicines and surgery. See our information on treatments to find out more about medicines for Colitis.

There are a number of reasons you may be offered surgery:

Your choice

You may be given the option to continue taking medicines or to have surgery. Some people choose to have surgery rather than trying to manage unpleasant side effects of medicines.

If medicines are not working for you

If medicines are not suitable or are not working well for you, your doctor may suggest surgery to help control your symptoms.

Slow growth in children and teenagers

For children and teenagers, being poorly and unable to get enough nutrients from food can affect their growth and development. Taking steroids can slow growth even further. Most children and teenagers with Colitis will be treated with medicines. But sometimes surgery may be needed to help with growth or development.

Higher risk of bowel cancer

Colitis is not cancer. However, the risk of developing bowel cancer increases around 8 to 10 years after the start of Colitis symptoms. Your risk of cancer is highest if all, or most, of your colon is affected by Colitis (known as extensive, total or pancolitis). If you are at higher risk of developing bowel cancer you will be offered more regular colonoscopies (a camera test to look closely at the lining of your bowel). Colonoscopies can help to spot precancerous changes in the bowel. If found, you may need surgery. See our information on bowel cancer risk.

Acute Severe Ulcerative Colitis (ASUC)

ASUC is a serious medical emergency that requires a stay in hospital for treatment and monitoring. Around 1 in 3 people with ASUC do not respond to medicines and need surgery. You may be offered medicines first, but if your condition is very severe surgery may be the safest option.

Severe complications

Sometimes Colitis can cause complications that may need emergency surgery. These complications include:

• Severe bleeding from the gut
• A hole or tear in the gut (a perforation)
• Toxic megacolon – when the colon becomes severely inflamed and enlarged (dilated), and is at risk of tearing

Surgery can help to reduce Colitis symptoms that are difficult to manage.

Reducing your symptoms may mean you can do other things more easily – like seeing friends and family, going to work, or playing sports. It may mean you need to take fewer medicines and can avoid the side effects of many medicines. Surgery could give you more freedom to do what you want to do in life.

Getting used to having a stoma or a pouch will take time, and it can be a challenge. However, most people who have had surgery for Colitis say that they would have the same surgery again.

Let your surgical team know what is important to you, and how surgery may impact that.

Colitis coming back after surgery

Colitis can’t come back if the whole large bowel (your colon and rectum) has been removed. However, some people still have symptoms outside of the gut, such as in their joints or eyes.

For most people, removing the large bowel should mean:

• Relief from tummy (abdominal) pain
• Lessening of symptoms such as urgency and diarrhoea
• Being able to stop taking medicines that may be causing side effects
• No risk of bowel cancer

Colectomy with ileo-rectal anastomosis is a type of surgery where your rectum is not removed. If you have surgery that leaves your rectum inside, you could still get inflammation in your rectum. Medicines such as 5-ASAs may be able to help control this inflammation.

Your treatment options will depend on you and the severity of your Colitis. Medicines do not work for everyone, and some complications of Colitis can be life-threatening without surgery. Speak to your IBD team and decide together which treatment options are best for you.

Your surgical team should go through your individual risk with you. They should tell you how to reduce your risk of complications. For example, if you smoke, stopping smoking can help to reduce your risk.

It’s important to know what your risks are so you can make an informed decision about your treatment. Don’t be afraid to ask your surgical team about your risks. See our Appointments Guide for tips on getting the most from your appointments.

Open surgery, also called laparotomy, is the more traditional way of operating on the gut. The surgeon makes one larger cut in the tummy (abdomen) and can see inside without using cameras. This may be used in some emergency surgeries – where surgery needs to happen quickly. It may also be preferred if you have had surgery before. Open surgery is done under general anaesthetic, which means you are fully asleep and cannot feel any pain.

A stoma is an opening made by a surgeon on the wall of your tummy (abdomen). It brings your bowel to the outside. The contents of your bowel, called your ‘stoma output’ empty straight into a bag. The bag is called a stoma bag. You can get different types of stoma bag in lots of shapes and sizes.

A two-piece stoma bag. One-piece stoma bags are also available.

You might need a stoma if you have surgery to remove a large part of your bowel.

Stomas can be made from part of the small bowel called the ileum. These stomas are called an ileostomy. Or they can be made from part of the large bowel called the colon. These stomas are called a colostomy. People with Colitis have ileostomies. Stomas can be permanent or temporary.

An Ileostomy showing the stoma opening

A stoma nurse will support you and give you practical help and information on living with a stoma.

Subtotal colectomy with ileostomy

During a subtotal colectomy the surgeon removes the colon but leaves the rectum (the colon and rectum together make up the large bowel). The surgeon makes an ileostomy (stoma) by joining a section of the small bowel to the surface of the tummy. Bowel contents pass out of this opening into a stoma bag.

The ileostomy may be temporary or permanent. Some people may be able to have pouch surgery in the future, so the ileostomy is only temporary. Other people may decide to live with a permanent ileostomy.

This type of surgery may be done in emergency situations.

Proctocolectomy with ileostomy

In this surgery the whole colon, rectum and anal canal are removed. The surgeon makes an ileostomy (stoma) by joining a section of the small bowel to the surface of the tummy. Bowel contents pass out of this opening into a stoma bag.

Proctocolectomy with ileostomy surgery is irreversible. This means the ileostomy is permanent. But this also means that there is no colon and rectum (large bowel) to become inflamed or develop bowel cancer.

Pouch surgery: restorative proctocolectomy with ileo-anal pouch (IPAA)

This surgery is commonly known as J-pouch surgery, or IPAA (ileal pouch-anal anastomosis) surgery. The colon and rectum (large bowel) are removed and the small bowel is joined to the anus. A pouch is made from the small bowel. This pouch can store poo until you are ready to go to the toilet.

This type of surgery is usually done in stages, so you’ll need to have more than one surgery. It’s most commonly done in three stages, but can be done in two stages, or in rare circumstances, one stage. Your surgeon will discuss which option is best for you.

In the first surgery, the surgeon removes the whole colon, but leaves the rectum and anus. The surgeon makes a temporary ileostomy (stoma) by joining a section of the small bowel to the surface of the tummy. Bowel contents pass out of this opening into a stoma bag.

In the second surgery, the surgeon makes a pouch from the lower end of the small bowel (ileum) and joins it to the anus.

For people having a two-stage procedure, the pouch is made in the first surgery. A looped section of the small bowel is joined to the surface of the tummy to create a temporary ileostomy. The ileostomy gives the newly formed pouch a chance to heal. This usually takes about three months. The temporary ileostomy is closed in the second or third surgery so the pouch can be used.

Having pouch surgery means you can still poo out of your bottom. A pouch can give you some control of when you pass poo and wind.

A pouch can’t hold poo for quite as long as a healthy rectum. This means you will need to poo more times a day than if you had a healthy rectum. Typically, people with a pouch go to the toilet for a poo about six times a day, and at least once at night. Some people will experience some unintended leaking of poo (bowel incontinence), but this usually reduces in the months following surgery. See our information on bowel incontinence.

Pouch surgery involves cutting into the lower tummy area (pelvic area), which may affect fertility in some people. See the later section Surgery and everyday life.

Pouch surgery can be a more complicated type of surgery, so it may not be carried out in your local hospital. If your doctor thinks pouch surgery could be suitable for you, you may be referred to a specialist hospital.

Colectomy with ileo-rectal anastomosis

In this surgery the colon is removed and the end of the small bowel (terminal ileum) is attached to the rectum. This means you can poo out of your bottom and would not have a stoma.

For this surgery to work, the rectum has to be healthy and not inflamed or scarred. If your anal muscles are damaged there’s also a high risk this surgery will not work. For these reasons, this type of surgery is not commonly used in Colitis. If you still have a rectum there’s a risk of it becoming inflamed from Colitis. There’s also a risk of developing cancer in the rectum.

Removing the colon means water cannot be absorbed like normal, so your poo may be quite watery. You may have to go to the toilet many times during the day and night.

Talking to your surgical team

Before a planned surgery is booked in, you will meet a surgeon to discuss your operation. The surgeon will explain your surgical options in more detail. They will also talk through the benefits and risks of the surgery. They should mention any possible complications that can happen as a result of surgery. Let them know if there’s anything you do not understand. This is your chance to ask questions and find out more information. Our Appointments Guide includes questions you may want to ask in your appointments.

If you decide to have surgery, you’ll be asked to sign a consent form. This is an agreement to say you understand the risks and benefits of the surgery. It is written proof that you give permission for the surgeon to carry out the operation. Even if you sign a consent form you can change your mind and withdraw consent at any point. If you cannot give consent, for example if you are under 16 years old, there are rules in place to help protect you. The NHS has more information on consent.

At this stage, you may also meet a stoma care nurse if you’re going to have a stoma. They will be able to help with any questions you have about the surgery or your care after the surgery.

Pre-operative assessment

Before planned surgery, you will have a pre-operative assessment. This helps your surgical team to make your surgery the safest it can be. It will also help the anaesthetist plan the best anaesthetic for you. Even if your surgery is done as an emergency, a surgeon and an anaesthetist will both assess you first.

The pre-operative team is usually made up of doctors and nurses. They may call you to assess you, or invite you to the hospital for an assessment. They will ask about your medical history and home life. They may ask you to do some tests before your surgery. This could include blood tests, a heart tracing (ECG) and chest X-ray. The tests you have will depend on your age, medical history, and the type of surgery you’re going to have.

If possible, it’s good to be as fit as you can before surgery. This can help your recovery and lower your risk of complications. Your surgical team can give you advice on how to improve your fitness before surgery. This could include eating well, not smoking and being as active as you can be. If you are underweight, you may be advised to take extra nutrients. This may be in the form of a special liquid feed to have as well as your usual diet. If you are a smoker, your IBD team will support you to stop smoking. It’s important to stop smoking before you have surgery, as smoking increases your risk of complications.

Anaemia is common in people with Colitis. Anaemia is when you have fewer red blood cells to carry oxygen around the body. If you have anaemia you should be treated for this before surgery, if possible.

Medicines and surgery

Your surgical team may advise you to stop taking certain medicines before surgery. They should give you a plan for when and how you should stop taking them.

Medicines that may be stopped or changed include:

• Steroids
• The combined oral contraceptive pill
• Blood thinning medicines

It’s important to tell your surgical team about all the medicines you are taking, including over-the-counter or herbal medicines. They will tell you which ones you need to stop or change before surgery. They may also advise you to start medicines before surgery. If you have other conditions such as diabetes or high blood pressure, they will want to make sure these are under control before surgery.

In some cases, you may need to take a strong laxative called a bowel preparation the day before surgery. This is used to completely empty your bowel. In other cases, you may be asked to have an enema to clear the last part of your bowel.

Things to think about before having surgery

• Transport – how will you get to and from hospital?
• Next of kin – who should the hospital contact with updates about your hospital stay? Are they ok with being contacted?
• Work and volunteering – will you need to take time off and who should you talk to about this?
• Caring responsibilities – do you care for anyone, such as children, a relative, or a partner? Any pets? Who will be looking after them whilst you are in hospital and whilst you recover at home?
• Pre-hospital instructions – did your surgical team give you any instructions on what to do before coming in, like stopping medicines?
• Going home – will somebody be able to help you when you go home? Can you get food delivered?
• Hospital visiting policy – when can people come to visit you?

Though most hospitals have Wi-Fi, it is not always reliable. You may want to download music, podcasts, or things to watch before coming into hospital just in case there is no internet to use.

How long you’ll stay in hospital

How long you’ll need to stay in hospital will depend on your individual situation. For the common surgeries mentioned in this information, it’ll probably be around 7 to 10 days. However, some people may only need to stay in hospital for 3 to 4 days. If you were very unwell before your surgery you may need to stay in longer.

It may be helpful to ask your surgical team when they expect you to go home. Generally, people who have had keyhole surgery are able to leave hospital sooner than people who have had open surgery. Hospital stays for planned surgery tend to be shorter than for emergency surgery. People who need emergency surgery are usually very unwell and may have a more complicated recovery.

Enhanced recovery programmes

Some hospitals have enhanced recovery programmes in place for some types of surgery. These programmes aim to reduce complications after surgery and get people safely home more quickly. Enhanced recovery programmes focus on being as healthy as possible before surgery, as well as getting moving as soon as possible after surgery.

Feeling better after surgery

When you feel better will be different for each person. When you first get home, you’ll probably feel quite weak and tired. You may not feel like doing much.

You should avoid any strenuous exercise for at least a few weeks after your surgery. This is so your wounds can heal properly. This means avoiding any heavy lifting or housework. You may struggle to go up stairs for a short time after surgery.

As time goes on you’ll notice your strength coming back. After a few weeks, you should be able to gradually introduce exercise into your daily routine. A gentle exercise programme may help speed up your recovery and you will likely be given advice on this by your surgical team.

You should be able to start going back to your normal daily activities. It’s important to listen to your body and only do as much as feels comfortable. Everybody is different, so try not to put too much pressure on yourself to get back to normal life straight away.

Your follow-up plan will depend on your individual situation. You should still be under the care of a gastroenterology team and a surgical team. You may have a nurse come to your home to help with any wounds if this is needed. Make sure you understand your follow-up plan when you are discharged from hospital. If you do not know, make sure to ask someone. It is also worth asking:

• What symptoms should I look out for?
• Who should I contact if I’m concerned?

If you’ve had stoma surgery, your stoma nurse is there to help. Having a stoma can be a big change and it may take a while to get used to it. Talk to the stoma care nurses if you need more information or have any issues. Many hospitals have stoma clinics or offer a stoma care advice line. See our information on Living with a stoma.

Driving

In the long term, surgery should not affect driving. However, you may have to avoid driving straight after surgery. You should not drive again until you are able to control a car properly, including making an emergency stop if needed. This may take several months. If you still cannot drive safely 3 months after your surgery you need to tell the DVLA. Your car insurance may not cover you if you drive before you are fully recovered, so check the terms of your policy. It may be helpful to ask your surgeon to confirm that you can drive again in writing, at your follow up appointment.

Diet

After your surgery, you may have to change what you eat for a short time. Your surgical team will give you specific advice on what you should eat. For example, they may advise you to eat a diet low in fibre. This will make it easier for your gut to break down and absorb food while it recovers from surgery.

As you recover, you may find that you can eat larger meals and a wider range of foods.

Most people with a stoma do not need to stay on a special diet. But there might be some foods or drinks that make your stoma more active or give you bad wind. This is different for everyone. Your stoma care nurse or the hospital dietitian should be able to advise you.

See our information on food for more on diet and Colitis.

Hydration

Your colon (part of your large bowel) is important for absorbing water. If you have your colon taken out you have a higher risk of dehydration. You may find it helps to drink extra fluids and rehydration drinks, including electrolyte mix. Our information on dehydration has more on staying hydrated after surgery.

Work and finances

If you work, you may be wondering how surgery will affect your job and your income. It can take from 3 to 10 weeks before people feel able to return to work. This depends on the type of surgery you’re having and the type of job you have. If you work in a very physical job, you may need more time off.

If you can, it’s best to let your employer know early on about your medical needs and time off so they can make adjustments. It may help to read our information on employment.

If you are absent for more than a week, you will need to get a ‘fit note’ (‘statement of fitness for work’) from the healthcare professional who is caring for you. They can make suggestions for additional support or adjustments when returning to work. This could include building up slowly to your normal hours and duties. This is called a ‘phased’ return to work.

See the ACAS website for more information on returning to work after an absence.

If you’re worried about money, have a look at our information on finance and benefits. You may be eligible for support. You can also visit the UK Government website or Citizens Advice for more information on welfare benefits. If you care for a child who lives with Colitis, you may want to read our information on disability benefits for children to see you if are eligible for financial help.

School and university

You may need to take some time out of studying to recover from surgery. Try to speak to your school, college or university as early as you can so they are aware of the situation. They may be able to give you extended deadlines or adjustments for exams. See CICRA for more information on Colitis and schools.

Emotional reactions

Everyone reacts to surgery in their own way. And your emotions may even change during the process. You may feel worried or scared, maybe nervous. You may feel a sense of relief. Or you may feel doubt about whether having surgery was the right decision. Going through lots of different emotions can be exhausting. Emergency surgery can be especially difficult as there is less time to adjust. The people close to you may also find it difficult to cope with the thought of you having surgery.

You may find it helpful to talk to someone about these feelings. IBD nurses, stoma nurses and psychologists can support you. You can also speak to your GP about local psychology services. Our information on mental health and wellbeing has further details about this.

It may be helpful to talk to other people who have had surgery for their Colitis or who have a stoma. Check our support for you page for ways you can connect to others living with Crohn’s or Colitis.

Body image

Your body may look different after surgery and you may find this difficult to come to terms with. On the other hand, you may feel that having surgery improves your body confidence. You may feel better and able to do the things you enjoy. Maybe you can start going to the gym. Or maybe you have the energy to be intimate with a partner again. If you’re having worries, talk to your IBD team. Your nurses will likely have spoken to lots of people about their body image worries. It may also be helpful to speak to others – friends, family, or other people who have been through a similar experience. Check our support for you page for ways you can connect to others living with Crohn’s or Colitis. Our information on mental wellbeing may also be helpful.

Sex and relationships

You may be worried about how surgery will affect your sex life. Your surgical team can give you specific advice about when they think it’s safe for you to have sex after surgery. Going back to sexual activity may mean exploring other ways of being intimate or new positions. It can be difficult to talk about sex, but being open about your needs and concerns can help.

For some men, having surgery may lead to difficulties with erections. This may resolve itself, but if not, speak to your IBD team, GP or visit a sexual health clinic for ways to help.

Our Sex and relationships information has more on how surgery may affect sex and suggests other ways you could be intimate with a partner.

Fertility and pregnancy

Some types of surgery for Colitis can affect fertility, so if you’re thinking of having children it’s important to let your surgical team know. For some people, it may be possible to delay surgery until they have completed their family. For other people, they may be able to have keyhole surgery. The risk of fertility problems is lower with this type of surgery.

You should still use contraception if you do not want to get pregnant, or do not want to make someone pregnant after surgery.

People with male reproductive organs

After having pouch surgery, you may have problems getting or keeping an erection. Many people can treat this with a medicine called sildenafil (Viagra). After pouch surgery, some people develop a rare complication called retrograde ejaculation. This is when the semen goes back towards the bladder instead of out the penis. The risk of this is lower after having keyhole surgery.

People with female reproductive organs

Having surgery for Colitis can make it more difficult to get pregnant. It’s thought that surgery in your tummy can cause scarring around the fallopian tubes and ovaries. This leads to fertility issues.

Having pouch surgery can increase your risk of fertility problems, but this risk may be lower in people who have had keyhole surgery. Up to 5 in 10 women have difficulty getting pregnant naturally after pouch surgery. Of those women that become pregnant after pouch surgery, around 3 in 10 become pregnant after using in vitro fertilisation (IVF) treatment. Your chances of getting pregnant after using fertility treatments are similar to people using fertility treatments who do not have Colitis.

If you do become pregnant, either before or after surgery, your doctors will advise you on what options are safest for you and your baby. For example:

• If you have a stoma, it’s still possible to deliver vaginally, but you may need a caesarean section if any complications arise.
• Vaginal deliveries are not advised if you have active disease in the rectum.
• If you’ve had pouch surgery, you will be advised to have a caesarean section. Vaginal delivery is possible, but it may increase your risk of incontinence.

Any surgery in the tummy, including a caesarean section, or surgery for your Colitis, can lead to scar tissue forming, called adhesions. Adhesions can make any future surgery a bit more complicated. Your surgeon should be able to give you further advice on this.

You may find it helpful to read our information on Reproductive health and on Pregnancy and breastfeeding.

Travelling

Having surgery shouldn’t stop you travelling. You may be advised not to fly in the first few weeks after surgery. Blood clots are more likely to develop when you sit still for a long time – like on long-haul flights. And this risk is higher if you’ve had surgery recently. Ask your surgical team if they have any specific advice for you about travelling. If you have a stoma, you’ll have to consider packing your supplies. Read more about travelling with Colitis in our information on travelling.

Insurance

When declaring your medical conditions, insurance companies will normally ask you if you’ve had surgery because of your Colitis. The cost quoted to you may be affected if you are waiting for surgery, or recently had surgery. Our information on insurance gives more details about this.

Exercise and physical activity

In the long term, having surgery should not affect how you exercise. If surgery helps your symptoms, it may mean you can be more active. If you have a stoma, you may have to make sure you have spare bags and other supplies with you.

Having surgery in the tummy area, especially stoma surgery, can put you at higher risk of getting a hernia. A hernia happens when there’s some weakness in the muscle wall, so internal organs, such as the bowel, can push through. You can reduce your risk of getting a hernia by working on your core strength and practising tummy exercises. Some people also find wearing support underwear can help. Speak to your surgical team about what could help you.

There is more on how you can exercise with Colitis in our Being active with Crohn’s or Colitis information. Colostomy UK and the Ileostomy and Internal Pouch Association also have information on exercising after surgery.

Children and young people

Much of the information here will apply to children as well. However, there are some things to be aware of:

• Surgery on children and young people often takes place in specialist hospitals. This may mean you have to travel further for the surgery.
• Children cannot consent to treatment until they are 16 years old.
• The growth and development of a child or young person will be important in deciding if surgery is suitable for them.
• Children and young people may be given some specific instructions before surgery. For example, avoiding vaccinations in the few weeks before surgery.

CICRA has more information on surgery in children with Colitis.

We follow strict processes to make sure our information is based on up-to-date evidence and easy to understand.

Please email us at evidence@crohnsandcolitis.org.uk if:

• You have any comments or suggestions for improvements
• You would like more information about the sources of evidence we use
• You would like details of any conflicts of interest

You can also write to us at Crohn’s & Colitis UK, 1 Bishop Square, Hatfield, AL10 9NE, or contact us through our Helpline: 0300 222 5700