Introduction

A small bowel (intestinal) transplant is an operation to replacea diseased or shortened small bowel with a healthy bowel from a donor.

It's a complicated and highly specialised operation that's onlycarried out at four specialist centres in the UK:

• Birmingham Children's Hospital
• Addenbrooke's Hospitalin Cambridge
• John Radcliffe Hospital in Oxford
• King's College Hospital in London

Asuccessful small bowel transplant can allow you to live as normal a life as possible, although medication and regular check-ups will be needed indefinitely.

This topic covers:

When it's needed

Transplant assessment

Waiting for a transplant

Types of transplant procedures

How it's performed

Recovery in hospital

Recovery at home

Risks

When asmall bowel transplant is needed

A small bowel transplant may be considered for people withbowel failure whodevelop complications fromtotal parenteral nutrition (TPN), or if TPN isn't possible.

TPNis where a personrequires all theirnutrition to begiven througha drip into a vein because their bowel is unable to absorb nutrients from any food they eat.

Bowelor intestinal failuremeansa person's bowel isn't able to absorb enough nutrients from food.It's most often caused by either short gut syndrome or a non-functioning bowel.

Short gut syndrome,also known asshort bowel syndrome,is where a large part of the small bowel is missing, removed or damaged.

It can be caused by:

• twisting of the bowel (volvulus)
• a birth defect where some of ababy's bowel develops outside the body (gastroschisis)
• when part of the tissue of the bowel dies (necrotising enterocolitis)
• surgery to remove a large section ofbowel to treat Crohn's disease or bowel cancer

Most people with short gut syndrome need someparenteral nutrition. In many cases this can be given at home withoutcausingany significant problems.

However, in some cases long-term TPN can lead to complications, whichcan sometimes be life threatening.

Theseproblems include:

• running out of suitable veins to insert the catheters
• an infection where the catheter is inserted, which can spread through the bloodstream and lead to sepsis
• liver disease

Transplant assessment

If you're being considered for a small bowel transplant, you'll be referred for a transplant assessment. Testswill becarried out over a period of one to three weeks to see whether a transplantis the best treatment for you.

Depending on your overall health, you may need to stay in hospital while these tests are carried out, or you may only need toattend a series of outpatient appointments.

Tests you may have include:

• blood tests to check your liver function, electrolytes, kidney function and see if you have any serious infections, such as HIV or hepatitis
• a number of scans such as a chest X-ray , a computerised tomography (CT) scan ofyour tummy (abdomen) and an ultrasound scan of your liver
• an endoscopy wherea long, thin tube with a camera on the end is inserted into your rectum to examine the inside of your bowel
• lung function tests

During the assessment, you'll have the chance to meet members of the transplant team andask questions.

The transplant co-ordinator will talk to you and your family about what happens, as well asthe risks involved in a small bowel transplant.

When the assessment is complete, a decision will be madeabout whether a small bowel transplant is the best option for you.

It may be unsuitable if:

• you have cancer that has spread to several areas of your body
• you have a serious illness with a verypoor outlook
• you require breathing support with a ventilator, a machine that moves oxygen-enriched air in and out of your lungs
• you're over 60 years of age
• youhaven't acted on your doctor's advice to quit smoking, for example or youhaven'ttaken the medication prescribed for you or you've missedhospital appointments

Waiting for a small bowel transplant

If you're suitable for a small bowel transplant and are unable to receive a living donation from a family member, you'll be placed on the national waiting list.

If you're on the waiting list, the transplant centre will need to contact you at short noticeas soon as organs become available for transplantation, so you must inform staff if there are any changes to your contact details.

You'll usually be contacted beforethe transplant surgeons have had a chance to assess the suitability of the donated organs, which means there's a chance youmay be called in several times for "false alarms" beforethe operation is eventually carried out.

The length of time you wait depends on:

• your blood group
• donor availability
• how many other patients are on the list and how urgent their cases are

On average, people wait just under six months for a small bowel transplant.

While you wait, you'll be cared for by the doctor who referred you to the transplant centre.

Your doctor will keep the transplant team updated about changes to your condition. Another assessment is sometimes necessary to make sure you're still suitable for a transplant.

Types of transplant procedures

The main types of transplant procedure are:

• small bowel transplant only recommended for people with bowel failure who do nothave liver disease
• combined liver and small bowel transplant recommended for people with bowel failure who also have advanced liver disease
• multiple organ ( multivisceral ) transplant although it's not often carried out, this can be recommended for people with multiple organ failure, and involves transplanting the stomach, pancreas, duodenum (the first section of small bowel), liver and small bowel

It's sometimes possible to carry out a small bowel transplant using a section of bowel donated by a living family member.

In these cases the donor will need to have an operation, where the donatedpart of bowel is removed and the remaining sections of bowel are connected together.

How a small bowel transplant is performed

A small bowel transplant is performed under general anaesthetic and takes around 8 to 10 hours to complete, although it can take longer.

After removing your diseased bowel, your blood vessels are connected to the blood vessels of the transplanted bowel. Thetransplanted bowel is then connected to your digestive tract orwhat is left of the bowel.

The surgeon willform an ileostomy , where part of the small bowel is divertedthrough an opening in thetummy, called astoma.

After the operation, the ileostomy allowsdigestive waste to pass out of your body into an externalpouch and lets the transplant team assess the health of your transplanted bowel.

Depending on your health and the operation's success, the ileostomy may be closed a few months after the operation and the bowel reconnected, but thisisn't always possible.

Recovery in hospital

Immediately after a small bowel transplant, you'll be taken to the intensive care unit (ICU) and carefully monitored. This is so the transplant team can check your body is accepting the new organ.

While in the ICU, you'll have various tubes in your veins to provide medications and fluids, and you'll be attached to monitoring equipment.

You may also have regular bowel biopsies ,where tissue samples are taken using the opening in your tummy created by the surgeon.

Alternatively, you may have an endoscopy ,where a long, thin tube with a camera on the end is inserted into the opening in your tummy to examine the inside of your bowel.

The transplant team can determine whether your body is rejecting the bowel from your biopsy results.If it is, additional treatment with medications to suppress your immune system (immunosuppressants) will be given.

Once you've started to recover you'll usually be transferred to a specialist transplant ward, where you'llcontinue to be given painkillers, immunosuppressant medication and nutrition through a tube into a vein (parenteral nutrition).

Over time the vast majority of people are able to move fromparenteral nutrition to eatinga normal diet fed through the mouth.

Recovery at home

On average people who have a small bowel transplant are discharged from hospital after around four to six weeks.

If you live a long distance from the hospital, you may need tostay in accommodation provided by the hospitalnearby for a month or two after you are discharged so you can be monitored carefully and treated quickly if any problems develop.

You'll be given immunosuppressant medication to help prevent your body rejecting the transplant. This medication needs to be taken for the rest of your life.

For thefirst fewweeks or months after leaving hospital you'llneed to continue having regular blood tests and endoscopies, but these will be carried out less often over time. Eventually you may only need to see your surgeon once a year and have blood tests every few months.

Although it can take a long time to make a full recovery from a small bowel transplant and there's a risk of potentially serious complications, the aim of the operation is to eventually allow you to live as normal a life as possibleincluding working, enjoying hobbies and living independently.

Risks of a small bowel transplant

As with all types of surgery, there are risks associated with having a small bowel transplant.

Better anti-rejection drugs, refined surgical procedures and a greater understanding of the body's immune system have increased the number of successful bowel transplants and improved survival rates in recent years.

However, potentially serious complicationscan still occur:

• heart and breathing problems
• infection of the small bowel such as an infectionby the cytomegalovirus (CMV)
• blood clots (thrombosis)
• post-transplant lymphoproliferative disorder (PTLD) wherethe Epstein-Barr virus infects white blood cells, which can lead to abnormal growths throughout the body and multiple organ failure, if not treated promptly
• rejection of the donor organ
• problems associated with the long-term use of anti-rejection medication such as an increased risk of infections, kidney problems and certain types of cancer

Because ofthese risks and theoverall poor health of people who are considered for a small bowel transplant, some people die within a few years of the procedure.

However, the majority of adults and children who have the operation live for at least another five years.

Rejection

Rejection is a normal reaction of the body. When a new organ is transplanted, your body's immune system sees it as a threat and makes antibodies, which can stopthe organworking properly.

Immunosuppressantmedications that weaken your immune system are given during and after your transplant, and must be taken for lifeto reduce the risk ofyour bodyrejecting your new bowel.

As well as stopping the donated organ working properly,rejection can sometimesmean that bacteria found in the small bowel can get into your bloodstream and cause a serious widespread infection.

You'll be closely monitored by the transplant team after surgeryto reduce this risk.

There's another rare type of rejection where the immune cells transplanted with the new organ fight against the cells of the host.

This is called graft versus host disease (GvHD). GvHDcan occur within a few weeks of a transplant or, less commonly, a few months or even years later.

In some cases where the transplant fails you may be put on the waiting list again for another transplant.