An ileostomy is a surgical procedure used to divert the end of the small bowel (known as the ileum) out of the body through an artificial opening in the abdomen called a stoma. This procedure is undertaken when the colon is either completely removed or allowed to ‘rest’ following treatment or other surgery.

Inflammatory bowel disease (IBD) refers to the chronic health conditions that cause inflammation in the gut. The two main conditions are Crohn’s disease and ulcerative colitis. Crohn’s disease can cause symptoms anywhere from inside the mouth to the anus, whereas ulcerative colitis affects the large intestine only. (We’ve written about the similarities and differences between the conditions in a previous blog post.)

In some cases, surgery may be considered to treat these conditions depending on the severity of symptoms and the potential benefit. Surgery may also be used to preserve life in emergency situations, where the bowel is severely diseased and at risk of rupture.

In order to find out more about these conditions and the various surgical techniques used, we conducted an interview with IA, the Ileostomy and Internal Pouch Association.

Q. How common is ileostomy surgery?

‘There are no official statistics released on the numbers of surgeries performed but the NHS quotes that approximately 9,000 ileostomies are performed annually. Not all of these will be permanent.’

Q. At what point in a person's treatment for IBD would surgery be considered?

‘Surgery is considered for various reasons to treat IBD. This could be:

  1. Where the surgeon needs to preserve life and an ileostomy is formed under emergency conditions. This can be more traumatic and difficult for the person given they have had little or no time to research, discuss and consider what life with a stoma might be like.
  2. Where drug treatment has failed to control the symptoms of the disease and surgery is needed to preserve quality of life. This would be a discussion between the patient and gastro team in conjunction with the surgeon. It’s important to assess a patient’s readiness for surgery, and that they have been given the opportunity to make an informed decision when considering surgery as part of managing their disease. Consideration would also be given to the current state of their health ensuring that they are given the best chance of recovery post surgery.
  3. Given that patient awareness of surgery is greater these days, a patient can decide when he/she feels that surgery may be the best option for them through discussion with their medical team.'

Q. What types of surgery are there?

This table breaks down the different types of surgery and what section of the bowel is affected:

Q. What role does a stoma nurse play in the time before surgery takes place?

‘It is important that the patient is introduced to the stoma nurse as soon as surgery becomes an option. The stoma nurse can play a vital role pre surgery. This consists of:

  • educating the patient and their family about living with a stoma.
  • helping the patient come to terms with stoma surgery and all that it entails, using support, empathy and counselling skills.
  • identifying any issues they may face based on factors such as lifestyle, occupation, family situation, current health and any disabilities that may make living with a stoma challenging.
  • introducing the person to a range of appliances and suggesting the most suitable for him/her.
  • providing the person with literature/videos about living with a stoma, introducing them to a patient support group such as IA (the Ileostomy and Internal Pouch Association) or arrange for them to speak with another person who has been through similar surgery (one of the flagship services that IA offers).
  • In preparation for surgery, where time allows (as in non emergency surgery), the stoma nurse will also ‘site’ a patient prior to surgery (place a mark on the patient’s abdomen at the most suitable position as a guide for the surgeon during surgery). Based on factors such as build, body shape, ability, position of waistline and clothing styles typically worn, the nurse will work with the patient to identify the ‘best’ place for the stoma to be sited on the abdomen, when stood up and sat down to ensure stoma function isn’t compromised or difficult for the patient to manage.

An ‘ill-placed’ stoma can make a person’s life difficult, leading to difficulty maintaining the daily routine with the stoma and possible acceptance. It’s not always possible to site a patient prior to surgery, especially where it is being done under emergency conditions.’

Q. How can a stoma nurse help a patient post surgery?

‘Post surgery the stoma care nurse will visit the patient on the ward and teach them how to care for the stoma. They will be shown how to clean the stoma and change their stoma bag, what to look out for when changing the bag as part of the care routine and ensure they are able to do this either unassisted (or with assistance, if required) before they can be discharged.

A stoma nurse will not agree to a patient being discharged if they do not feel the patient can adequately care for themselves or have the required support in place at home to help them. Obviously not all patients with a stoma are able to care for themselves and the nurse will also help to train parents (if the patient is a child), carers or spouses/partners/family members/friends, depending upon the person’s situation.

Patients will be supplied with an adequate amount of equipment to take home with them, and told how to obtain a further supply. Post discharge, the stoma nurse will usually follow up their patient within a few days to see how they are managing. This may be a telephone call or home visit depending upon the service offered by the nursing team.’

Q. How often should a patient expect to see a stoma nurse following on from their surgery?

‘This will be determined according to the needs of the patient, and the stoma nursing service available in the area. Patients can expect to be seen more often initially following discharge from hospital; either at home or in hospital or community clinics, and then less frequently as the patient progresses. Contact details are given so that the patient can ring for advice or an appointment‘

Some nurses endeavour to see patients at set frequencies post surgery (e.g. monthly, quarterly, annually) so they can monitor progress and offer support as required. As time progresses and a person’s confidence grows the need to see the stoma nurse decreases and some patients may not need to speak to their nurse for years after surgery, if at all.’

‘Where a person does see the nurse, it could be for many reasons. Possible reasons include:

  • if the person is experiencing any problems (such as sore skin, hernia, leakage or perhaps psychologically they are not coping with or accepting the stoma)
  • if the stoma isn’t working as it should
  • to answer any general lifestyle questions about living with a stoma (such as diet, travel, sex and relationships, pregnancy, products and accessories)
  • having a product review (to determine whether they are still using a stoma bag that best suits their needs)
  • if they are experiencing difficulty since stoma formation (such as psychological impacts, which may require a referral for counselling)

Q. How does a stoma affect everyday life?

‘Having a stoma does affect everyday life but how much really depends on the person and their stoma. For those who have been living with chronic disease or illness, hopefully it brings a welcome relief to those symptoms and allows them an opportunity to return to the daily things that they enjoy doing without the ongoing effects that a disease like IBD can have on a person. Those ongoing effects can of course be mental as well as physical. A stoma can also be formed as part of ongoing management of bowel disease and therefore some may continue managing active disease as well as living with a stoma.

Post surgery, a person needs to gain confidence living with a stoma. A lack of confidence can really affect a person day to day and prevent them from being able to do what many consider even the simplest of tasks, such as socialising with friends and family or even going out of the front door.

Returning to work can initially be a worry post surgery. Concerns such as access to toilets, changing facilities should a leak occur or even ‘toilet’ time can be a worry where time is monitored. Discussing your concerns with your employer prior to your return can help to put your mind at rest. A phased return can often help you settle back to work, wherever possible, but will depend on your role. This may include a combination of days in the office and days working from home, returning to work part time whilst you gradually build up to your normal working pattern or perhaps a change of duties whilst you settle. One of the things that concerns people post surgery is how much to share with work colleagues. Everyone is different and how much you to choose to share (or not share at all) is a personal choice.

Naturally, most are concerned about the effect an ileostomy can have on present and future relationships. Entering into a new relationship can be daunting for someone with a stoma. What do I tell the person – When? How? What will they think of me?  

Thankfully for many their worries are unfounded and a supportive partner accepts the person you are.’

People with IBD can also access support from Crohn’s and Colitis UK, which again has local support groups and runs fundraising activities for those affected.

Q. Are there any specific dietary or lifestyle factors someone living with a stoma will need to take into account?

‘One of the biggest concerns many have following this type of surgery is diet. Whether they can enjoy all the foods they used to eat; or perhaps after chronic illness they were on a limited diet and are frightened to expand their diet to other foods beyond what they have become used to.

Diet is a very individual thing for anyone, with or without a stoma, and there is lots of ‘advice’ on the internet about what people should and should not eat. It is true that there are certain foods that can have specific effects on the body but as a general rule we would encourage people to eat whatever they enjoy, subject to any medical advice or allergies they may have.

Initially after surgery, people may be advised to eat foods that are easily digestible (low in fibre) and then gradually build up to normal. Many are concerned that a high fibre diet can lead to a bowel obstruction when living with a stoma, for example, foods that aren’t digested by the body, regardless of whether you have a stoma, such as certain fruit and vegetables.

Beyond the immediate care of the stoma, other lifestyle factors that many think about can include socialising, working, school (stomas affect children of all ages also), relationships (with existing or new partners), body image, diet (eating in or out), clothing, exercise and travel/holidays.’

Q. When or how often is it possible to have 'reversal surgery' to insert an ileo-anal pouch?

Around 400 ileo-anal pouches are formed annually in the UK (according to Pouch Registry figures from 2017). An ileo-anal pouch is not suited to everybody. People who have a diagnosis such as ulcerative colitis, Familial Adenomatous Polyposis (FAP), colon cancer or perhaps large bowel trauma may be suited to a ileo-anal pouch..

A person diagnosed with Crohn’s Disease or Indeterminate Colitis will not usually be considered for an ileo-anal pouch as these conditions can occur within the small bowel which is used to construct the ileo-anal pouch. Because an ileo-anal pouch offers a person a continent solution and control, it is equally important also that the anal sphincter and fine nerves in the pelvic area are not damaged which could otherwise compromise pouch function.’

Q. What does reversal surgery involve?

‘Pouches are typically formed in stages. Two stage surgery involves colon removal, the creation of the ileo-anal pouch and a covering ileostomy (in one operation) followed by stoma reversal (often referred to as takedown – second operation).

During stage one, the colon is removed (including the rectum), the ileo-anal pouch is formed from the last 30-40cm of the small bowel (known as the ileum) and is stitched to the top of the anus internally. A loop ileostomy is formed to divert the stool protecting the pouch whilst it heals. Takedown will typically happen around 3-6 months post stage 1 of the surgery.

Three stage surgery may be done where the patient requires surgery to be split into three stages if the patient is very unwell. A sub-total colectomy may be done during stage 1 to remove the colon, leaving the rectum in place and an ileostomy formed. This may allow time for symptoms to be alleviated, the body to recover as a person learns to cope with a stoma whist they have time to consider an internal pouch.

During stage two the surgeon removes the rectum and forms the ileo-anal pouch from the remaining end of the small bowel. A temporary ileostomy is formed above the pouch to allow this to heal. Stage 3 is stoma reversal or ‘takedown’ once the pouch is fully healed.’

Q. What physical difficulties can someone with an ileostomy or ileo-anal pouch experience?

‘Most surgery carries risks and these are best discussed with your surgeon or stoma care nurse prior to surgery. In general, someone living with an ileostomy MAY experience issues such as leakage or sore skin, bowel obstruction, hernia or adequate hydration; however, these issues can be mitigated with careful management and advice from your stoma nurse.

In general, with an ileo-anal pouch, you may experience issues such as

  • an increase in frequency in the early days, whilst the pouch settles and you learn to understand the different sensations coming from the pouch. This can lead to occasional leakage (from the anus) but usually settles over time.
  • inflammation of the pouch, known as pouchitis, can be another issue for some, however once diagnosed, it can be managed with a course of antibiotics.

In women of child-bearing age, an ileo-anal pouch can reduce their ability to conceive and we recommend that if you are considering an ileo-anal pouch and are planning to start a family, you discuss this with your surgeon ahead of surgery.

In extreme cases, the pouch may become troublesome and lead to excision (removal of the pouch and return to an ileostomy) however this would only usually be after extensive investigation by, and discussion with, your medical team. Figures show around 5-10% of pouches fall into this category.   

Everyone is different however and many people live happily with an ileostomy or an ileo-anal pouch, with minimal issues or completely symptom-free. Many are able to enjoy doing the things in life that they want to, that disease may have prevented them from doing.’

You can find more information on living with a stoma or an ileo-anal pouch at the Ileostomy and Internal Pouch Association website. Alternatively you can contact them on 0800 0184 724 or email info(at)iasupport.org for copies of stoma or pouch related literature or to speak with someone who has been through a similar experience.