Small Bowel TransplantBack
Small Bowel Transplant
A small bowel (intestinal) transplant is an operation to replace a diseased or shortened small bowel with a healthy bowel from a donor.
It's a complicated and highly specialised operation that's only carried out at four specialist centres in the UK:
- Birmingham Children's Hospital
- Addenbrooke's Hospital in Cambridge
- John Radcliffe Hospital in Oxford
- King's College Hospital in London
A successful 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 a small bowel transplant is needed
A small bowel transplant may be considered for people with bowel failure who develop complications from total parenteral nutrition (TPN), or if TPN isn't possible.
TPN is where a person requires all their nutrition to be given through a drip into a vein because their bowel is unable to absorb nutrients from any food they eat.
Bowel or intestinal failure means a 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 as short 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 a baby's bowel develops outside the body (gastroschisis)
- when part of the tissue of the bowel dies (necrotising enterocolitis)
- surgery to remove a large section of bowel to treat Crohn's disease or bowel cancer
Most people with short gut syndrome need some parenteral nutrition. In many cases this can be given at home without causing any significant problems.
However, in some cases long-term TPN can lead to complications, which can sometimes be life threatening.
These problems 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
If you're being considered for a small bowel transplant, you'll be referred for a transplant assessment. Tests will be carried out over a period of one to three weeks to see whether a transplant is 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 to attend 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 of your tummy (abdomen) and an ultrasound scan of your liver
- an endoscopy - where a 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 and ask questions.
The transplant co-ordinator will talk to you and your family about what happens, as well as the risks involved in a small bowel transplant.
When the assessment is complete, a decision will be made about 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 very poor 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
- you haven't acted on your doctor's advice - to quit smoking, for example - or you haven't taken the medication prescribed for you or you've missed hospital 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 notice as 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 before the transplant surgeons have had a chance to assess the suitability of the donated organs, which means there's a chance you may be called in several times for "false alarms" before the 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 not have 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 donated part 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. The transplanted bowel is then connected to your digestive tract or what is left of the bowel.
The surgeon will form an ileostomy, where part of the small bowel is diverted through an opening in the tummy, called a stoma.
After the operation, the ileostomy allows digestive waste to pass out of your body into an external pouch 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 this isn'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'll continue 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 from parenteral nutrition to eating a 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 to stay in accommodation provided by the hospital nearby 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 the first few weeks or months after leaving hospital you'll need 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 possible - including 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 complications can still occur:
- heart and breathing problems
- infection of the small bowel - such as an infection by the cytomegalovirus (CMV)
- blood clots (thrombosis)
- post-transplant lymphoproliferative disorder (PTLD) - where the 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 of these risks and the overall 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 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 stop the organ working properly.
Immunosuppressant medications that weaken your immune system are given during and after your transplant, and must be taken for life to reduce the risk of your body rejecting your new bowel.
As well as stopping the donated organ working properly, rejection can sometimes mean 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 surgery to 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). GvHD can 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.
'He'd defied all the odds stacked against him'
'He'd defied all the odds stacked against him'
Few boys have faced as many trials as Aaron Gray. He received a liver and small bowel transplant when he was just three and has also had two heart operations.
Family life for Catriona Gray and her partner William, who live in Peebles, Scotland, was turned upside down when it was found that Aaron, their first child, had been born with an acute heart condition that needed immediate surgery.
The operation saved his life, but while he was recovering Aaron caught an infection that destroyed most of his small intestine. At five weeks old it was likely he would die. "We were told to prepare ourselves for the worst," says Catriona.
Aaron pulled through, but suffered acute liver damage. Aged only seven months, he needed a new liver and small bowel. Aaron finally left hospital for the first time when he was 13 months old, but his heart was too weak to undergo transplant surgery and his future looked bleak.
"It was a worrying time. We feared the worst," says Catriona. "Then, at last, we had some good news. Aaron's liver started to repair itself. His jaundice went and he was the healthiest he had ever been. He'd defied all the odds stacked against him."
In the summer of 1999, when he was almost three, Aaron was declared fit enough for open heart surgery. However, he again fell victim to a severe postoperative infection. His jaundice returned, his liver was suffering and by January 2000 he was in urgent need of a transplant. Then came the agonising wait for a donor.
The call came at the end of May. The family were rushed by air ambulance from Scotland to Birmingham for the operation. A liver and small bowel had been donated by the parents of a 10-year-old boy and were successfully transplanted into Aaron.
He improved rapidly. Within two weeks of the transplant the yellowness of jaundice had gone and Aaron's appetite returned, along with his health.
"Aaron now lives a wonderful, normal life and can eat for Scotland, and loves his veggies. He has a strong, outgoing personality, without which I'm sure he wouldn't have made it through these past years," says Catriona. "He is an inspiration to us all."