Intestine Transplant

Intestine Transplant

The intestinal tract is part of the digestive tract, which breaks down food into small pieces. The body absorbs these pieces to create energy. The digestive tract is a hollow tube and is divided into several parts. Each part has a special purpose:

The oesophagus – This is the tube that moves food from the mouth into the stomach.

The stomach – Mainly stores food before it enters the small intestine.

The small intestine – This is where most food is broken down and absorbed into the body.

The large intestine (or colon) – This is where water is absorbed from the digested food and forms solid stools.

The small intestine is about 7-8 feet long in new-born infants and grows to about 20 feet by adulthood. The small intestine is made up of three parts:

The first part is the duodenum, which is about 12 inches long in adults. It is connected to the stomach. Pancreatic and liver fluids drain into the duodenum.

The middle of the small intestine is the jejunum, which makes up about half of the small intestine. The jejunum is responsible for absorbing carbohydrates, proteins, vitamins and minerals; these are all taken into the blood stream from the jejunum.

The lower small intestine is called the ileum.The ileum is between 2-4 meters long. It is responsible for absorbing anything the body needs which the jejunum has not already absorbed.

The small intestine is the most important part of the digestive system. Most people can live without a stomach or a large intestine, but it is harder to live without a small intestine.

Intestinal failure can develop when a person’s small intestine does not provide the necessary long term nutrition needed to sustain a normal life. This leads to the need for additional long term nutrition to be delivered through large veins in the body. This is called “Total Parenteral Nutrition” or TPN.

There are two types of intestinal failure:

1. The small intestine may be too short to digest food correctly. This is called “short gut syndrome”.

2. The small intestine or other parts of the digestive tract are not working correctly. This may be called a “motility disorder”.

Transplantation is a surgery to put a donated organ from someone who has either died or offered their organ as a living donor, into a person who needs it. Currently we do not perform living related transplants for intestines. A part of the small intestine can be transplanted into a person. If needed, other organs, such as a stomach or pancreas, can be transplanted at the same time.

No. In some people, potential problems of transplantation may outweigh the benefits. Problems may occur if:

The patient is not strong enough to withstand the surgery because of other serious illness.

In some patients (particularly those with tumours) it may not be technically possible to carry out the operation.

The patient may have serious infections at the time of surgery.

Because of these potential problems, each patient is checked by the medical team at the transplant center to determine if a transplant would be the right treatment for them.

Some patients with intestinal or multi organ disease may be considered for an intestinal transplant and your consultant thinks this might be appropriate for you. You will now need to be carefully assessed to see if intestinal transplant is the best choice for you and your disease.

The first step of this assessment will be an appointment with an transplant surgeon, or at the hospital that has referred you. The purpose of this first appointment is to decide if it is appropriate for you to go for a full clinical assessment.

Once a date is agreed, the tests and investigations are immediately arranged. The tests and investigations are to check you are fit and well enough to go through the surgery and that a transplant is the right option for you. Please remember that
it is extremely difficult to reschedule tests once they have been arranged.

You may need to be admitted to the transplant ward for your assessment. The tests and investigations will take place over a time period.

The intestinal transplant assessment usually consists of:

Blood tests (includes tests for HIV and hepatitis)

Diagnostic imaging: Chest X-ray, CT scan of the abdomen, an ultrasound of arms and legs (to look at your veins) and an ultrasound of your liver

Heart testing – which will involve an appointment with a cardiologist (heart specialist), a myocardial perfusion scan – about which you will receive a more detailed letter, and an echocardiogram (an ultrasound of your heart – ECG).

A lung function test

Sigmoidoscopy or colonoscopy (examinations of your bowel)

Dental evaluation (usually done by your local dentist)

Cervical smear test for all adult females (should be done by your GP)

You will also meet with several people:

• Gastroenterologist
• Dietitian
• Transplant Specialist

• Pharmacist
• Anaesthetist
• Consultant Transplant Surgeon • Transplant Co-ordinator
• Psychiatrist

The actual tests you have and people you will meet depends on your own needs. You may need to have more tests or see other specialists, depending on your past medical history or the results of your tests.

Yes. All of the specialists you meet will tell you a lot of information about transplantation and what is involved but you should also ask any questions you may have. It might help to write down any questions you want to ask and bring them with you. You may find it useful to bring along a friend or relative for support and to discuss any questions you may have.

You may also like to speak to someone who has already had an intestinal transplant. This can be arranged through your Transplant Co-ordinator.

After the assessment is complete, your case is discussed by the multi-disciplinary team, both locally and nationally. The team consists of transplant surgeons, nurses, gastroenterologists, anaesthetists, pharmacists, dietitians and psychiatrists. The team will decide if a transplant is suitable for you. The multi-disciplinary team meet monthly and the national meeting occurs every other month. Your case must be approved at both meetings before you are put on to the waiting list.

Your Recipient Transplant Co-ordinator will contact you when the decision has been made. Keep in mind that the multi-disciplinary team may suggest you need more tests before a decision is made.

If it is agreed you are suitable for a transplant, you will be put on the transplant waiting list. Your Transplant Co-ordinator will contact you to arrange for you to sign a ‘consent’ form to show that you agree to go on the waiting list.

It takes about a week after signing the consent form to become ‘active’ on the list. Your Transplant Co-ordinator will let you know when this has happened. When possible your Transplant Co-ordinator will call you the day you become active. Being active on the national transplant waiting list means that you could receive an offer of a transplant at any time day or night.

They must ask your permission to use your personal information on the waiting list. The consent form lets them know you are happy for them to use your personal information and put your name on the waiting list. They do not use your personal information for anything else.

Carry on as normal but make sure you stay as healthy as you can.

Take regular exercise as this will help maintain your fitness

If you smoke it is very important to stop.

Let your doctor or Transplant Co-ordinator know if you become unwell, are admitted to hospital or have any changes in your health or medication. You may need to be put on hold from the list if you become unwell, as you might not be well enough to have the surgery. This is called being ‘temporarily suspended’ from the list.

Inform your Transplant Co-ordinator if you travel abroad or are going to be out of contact. Again this will mean you may need to be temporarily suspended from the waiting list.

Do not forget to inform your Transplant Co-ordinator when your health improves or you return from holiday so you can be reactivated on the list.

Send in a monthly sample of blood. This enables us to closely monitor your antibody status, which allows us to match organs to you. We will write to you once you are active on the waiting list and send you the blood bottles and envelopes you require to do this. You will need to arrange your blood tests with the nurse at your GP surgery and then post the samples in the envelopes provided.

It is very important that we always have an up to date contact number and home address for you. Transplant calls can come at any time of the day or night and if we are unable to contact you then we would have to offer the organ to somebody else. Make sure your phone is switched on, volume turned up and in working order, especially overnight

Once you are on the transplant waiting list there will be a period of waiting for a suitable organ to become available. Organs
are matched to your blood group and your tissue type. Your tissue type can be affected by the number of antibodies you have. You can develop antibodies through various means; blood transfusions, pregnancies and infections. If you have a high level of antibodies the wait for a matching organ may be increased.

If you do not have any antibodies you may receive an offer of an organ relatively quickly i.e. months rather than years. We will discuss your tissue type and antibodies with you.

Can I reduce the wait for an intestine?

No. Organs are given to the person who is the closest match to the donor so that there is the best chance of success. Neither your doctors nor your Transplant Co-ordinator has any influence over this.

When will I be offered an intestine?

There are Recipient Transplant Co-ordinators working around
the clock accepting offers of organs and coordinating transplant operations. Please remember you could be called anytime, day or night. Think about how you will get to the hospital, especially if you are called overnight. If you are going to need transport it is important your Transplant Co-ordinator is aware of this. Please also think about what you will do with young children or pets when the call comes. When you are called you will need to come to the hospital as soon as possible as preparing you for surgery must happen very quickly. If you are delayed it could put the chance of your transplant happening at risk.

What should I do when I get the offer?

A Recipient Transplant Co-ordinator (it may be someone you have never spoken to) will tell you exactly what to do. The Co-ordinator will ask you some questions about your general health. It is important for you to inform them if you have any new illnesses and/or medication. The Transplant Co-ordinator will let you know what to bring to the hospital and where to go to. Do not have anything to eat or drink once you receive the call, unless you need to maintain your blood sugar levels. If this applies to you, you must eat enough to maintain your blood sugar levels.

Once you get to the hospital, the hospital staff will start getting you ready for surgery. This will include blood tests, starting an intravenous drip to keep you hydrated, (as you will be asked not to eat or drink anything), a chest X-ray and an ECG (tracing) of

your heart. We will then discuss the surgery again, including the risks and allow you to ask any questions.

You may have to wait for over 12 hours before finding out if
the transplant can go ahead. Once the surgeons have seen
the organs at the donor hospital, they will let the Recipient Transplant Co-ordinator know if the surgery is going ahead or if we should send you home (this is often called a ‘dry run’ or ‘false alarm’).

Dry runs or false alarms are common. Because we are working against time, everything needs to happen very quickly. This
is why you are called in before the surgeons have seen the new organs. We do not know if the organ we accept for you is good enough until the surgeons have actually seen it. Do not be surprised if you are sent home without a transplant. Unfortunately this can happen to you more than once before getting your transplant.

As the recipient of a donated organ you are entitled to know the following:

Age range of the donor

Gender of the donor

Type of death (such as a head injury) unless this might compromise the donors confidentiality

Whether the donor poses a greater risk to you of spread of infection or cancer

No. There are two main reasons why you may not receive the transplant once you arrive at the hospital:

1. We need to assess you and ensure you are currently fit and well enough to undergo surgery and that there have been no significant changes since you were last seen by your medical team. For example we will check that you have not had any new heart problems, put on too much weight or have an infection.

When you arrive a blood sample will be taken to ensure the donor organ is an exact match to you. This is called a cross match, if there is a reaction from the sample it is called a positive cross match and the transplant will not be able to proceed.

As discussed previously, dry runs can occur if the donor organ is not suitable.

If I am called to the hospital, do I have to have the transplant?

No. It is your choice whether you want to have the transplant or not. But you must be informed that we are unable to guarantee if or when another suitable organ may become available. If you do decline an organ you will be invited to re-discuss the option of transplant and ensure you wish to remain on the list. Being on the transplant waiting list is your choice. Should you wish to be removed please ask your referring doctor to inform the team of this requestion

Donor intestines come from somebody that has died. They are donating their organs because they were either on the organ donation register or their family have agreed to donation. There are two main types of deceased donors – Donors after Brain Death (DBD) and Donors after Cardiac Death (DCD). For an intestinal transplant the intestine would only come from a DBD donor. These are usually patients who have had an injury to their brain (for example a stroke or head injury) and tests have shown that their brain is dead. The patient will not survive without a machine to keep them breathing and they have lost all senses. The organs are retrieved whilst the donor’s heart is still beating. The intestine is removed from the donor and placed on ice to transport. A team of surgeons  will go to the donor hospital to retrieve the organ and bring it to your hospital.

All donors are thoroughly screened for cancer and any infection and specifically tested for hepatitis and HIV, to reduce any risk
to you of spread following transplant. We cannot guarantee the screening will pick up all cancer or infections, although it is very rare for the screening process to miss any potential risks. If there are any potential risks to you from the donor, the doctors will discuss this with you and ask if you want to receive the intestine.

The transplant operation takes place in the main operating theatres of the transplant Hospital. You will be taken to the anaesthetic room once we have confirmation the transplant is proceeding. Surgery usually lasts 8-10 hours. If your operation is longer, this does not mean the surgery is going poorly. Each operation will be different.

The surgeon usually joins one end of the donor intestine to the end of your intestine. Sometimes, the upper end of the donor intestine is joined directly to the stomach.

Sometimes the stomach and intestine are transplanted together. In this case the stomach is joined to the oesophagus at one end. The end of the intestine is taken to a hole (stoma) created by the surgeon leading outside the body (a colostomy). Solid waste from the intestine comes out of the hole and goes into a bag attached to the outside of the body.

The stoma, depending on how much of your large intestine you have left, may be temporary. The reason for it is to allow the transplant team to monitor how your body is accepting your new organ. The transplant team will monitor the volume of waste which comes out of the stoma in a 24 hour period. If the volume suddenly increases it may be a sign of infection or rejection. In this case they will review you further.

The stoma is also used to allow the transplant team to see the new intestine. This is done by putting a small camera through the stoma; this camera can zoom in closely and allows the team

to see the very small structures inside the intestine to check there is no rejection. This will be done twice a week in the first month and gradually become monthly, three monthly and then will eventually be done once a year if your stoma needs to be permanent. This procedure is called a scope.

What happens to your own intestine?

The major obstacle with this operation is the removal of your own intestine, as this can be complicated by lots of scar tissues from previous intestinal surgery. The intestine that is removed will be disposed of.

You will wake up in the Intensive Care Unit. The average length of stay is 5-7 days but you may need to stay longer – it depends on how quickly you recover after the surgery. You will have many intravenous access lines (narrow tubes going into your veins) connected to medications, fluids and monitoring equipment (to check your blood pressure, heart rate and how well you
are breathing). The cut on your abdomen will either resemble
a large “I” or a large upside down letter “Y”. The wound will be stitched and there may be 2-4 wound drains in place to
drain away any excess fluid. Before you are discharged from
the intensive care unit, staff need to make sure you can breathe normally without help, are able to sit in a chair and no longer need to have your blood pressure or heart rate monitored all the time.

After your stay in Intensive Care you will be transferred to the Transplant ward. The nurses on this ward work specifically with transplant patients and are very used to the transplant related medications and care that you need.

As soon as you get to the ward the healthcare staff will start to get you ready for your discharge home. At the Oxford transplant center we always aim to include the patient and their family
in the care. Throughout your hospital stay we believe that

Your recovery is a team effort between the multi-disciplinary healthcare team and you and your family.

The transplant ward nursing staff will be teaching you how to monitor your blood pressure and temperature, how to measure your urine output, how to monitor how much you drink and how to take your new medications. Your nurses will encourage you to do as much as you are physically capable of doing.

This helps reduce the risk of complications such as blood clots and chest infections and will help to get you home as soon as possible. At first, we will help you up to the chair and later help you with walking in the corridor. You will be surprised how quickly you get back on your feet with just a little effort.

Within approximately 48 hours after your operation you will be started on Total Parenteral Nutrition (TPN). This is nutrition given straight into your blood stream via an intravenous drip. This will continue until we are certain that your intestine can cope with liquid feed or food.

During your operation you will have a narrow plastic feeding tube inserted into your stomach. This feeding tube will have another tube attached inside that will be placed into your intestine. When your intestine is ready we will commence
liquid feed very slowly via this tube. Once your new intestine is absorbing enough nutrients and vitamins from the liquid feed your transplant dietitian will slowly reduce and turn the TPN off. This happens usually within the first 2 weeks but this can vary from person to person. Once you are receiving liquid feed and your intestine is absorbing the right amount of nutrition you will be able to start on oral food (food by mouth). You will start off on a light, low fat diet and will progress onto a normal diet. The transplant dietitian will work closely with you at this point so you are fully aware of what food you can and can’t eat.

You may need some advice and support managing the stoma if you have not had a stoma before. This will be given by the

transplant dietitian and stoma care team. You will also see the dietetic assistant who will order foods for you on a daily basis until you are happy taking a normal diet.

This can vary from person to person and often depends on whether you were eating before your transplant or not. If you have spent many years restricting diet and fluids, it is likely that it will take some time to build up your food intake again. During this time you will be supported by the transplant dietitian who will advise and support you. Most patients return to a normal diet with no restrictions. Once on an oral diet you will be asked to follow food safety advice to reduce the risk of infection from foods. This will be discussed with you in great detail when the time comes.

As part of your assessment you will meet with our pain team to develop an individualised plan of post-operative care for you. Many patients with intestinal failure are on large amounts of pain relief, therefore your post-operative care is designed to suit you. Most commonly we use patient controlled analgesia (pain relief). Pain medication can be altered to suit your needs but this has to be done in a safe controlled manner as some medications can affect how well the new intestine will absorb fluids / food.

The average length of stay in hospital is 4-6 weeks. After being discharged from the ward, and you can look after your new intestine by yourself.

Yes. We need to monitor you very closely following your transplant and will be looking at the contents of your blood to check on levels such as sodium, potassium and iron. We will monitor your the level of vitamins and minerals, to ensure you are getting the right amounts of nutrients. Your inflammatory (infection) markers will be closely monitored. If they go up it
tells the team that there is an infection somewhere in your body. If this happens we can treat you quickly. Your kidney function will be monitored, some of the medications you will be on post operatively can have an impact on your kidneys and therefore we need to ensure they continue to work properly.

Initially blood tests will be once a week but this will slow down as you recover and will eventually be on a monthly basis, then every other month and then every 3 months.

You will need to take an immunosuppressive drug (a type of drug which should stop your body rejecting the organ) and have its level monitored for the rest of your life. This will ensure you are taking the correct  medication dose.Regular endoscopies and biopsies will be done to monitor and prevent any rejection of the transplanted organ.

An endoscopy is the procedure of putting a small camera through your stoma, into the new intestine. This allows the transplant team to monitor for rejection in the best way by looking at the new intestine to check on the healing process.

A biopsy is when the surgeon removes a small amount of
tissue for examination in the laboratory. After you have had an intestinal transplant, on some occasions the surgeon will want to take a biopsy of the transplanted intestine. We have highly skilled pathologists (a specialist doctor who studies the cause
of disease) who will look at this biopsy in microscopic detail to check for any rejection. This will not happen at every endoscopy and the surgeon will inform you if he is going to take a biopsy. It should not cause you any pain or discomfort. If you have been discharged home and are returning to clinic, having a biopsy will not keep you in the hospital overnight.

As with all procedures there are potential risks with a biopsy, although these risks are very small. There is a small risk of bleeding (2-5%). If bleeding were to occur it may lead to you needing a blood transfusion. The risk of a biopsy damaging your new intestine is very small and the benefit of knowing what is going on in your intestines often outweighs the small risk to you of undergoing a biopsy. The transplant team will discuss the risks and benefits of having a biopsy with you at the time

The development of better immunosuppression medications and surgical techniques over the last ten years has led to improved results from intestinal transplant, and continues to do so. The number of intestinal transplants performed increases each year. The Intestinal Transplant More than 80% of people who have an intestinal transplant gain independence from intravenous feeding can return to eating and drinking as normal.

Your body’s natural immune response is to try and get rid of the new organ. White blood cells are sent in the blood supply by the body to attack the transplanted intestine. Immunosuppressant medication controls this response. However, rejection will

occur in about a quarter of all transplants. If you have received more than one organ in your transplant, rejection could affect one or all of the organs. Rejection is diagnosed by a biopsy. Rejections can usually be treated successfully with increased immunosuppression medication but in severe cases it can lead to the transplanted organ being removed.

1. Increased stoma output and / or diarrhoea
2. Fever / high temperature (above 37.5 C or 99.5 F) 3. Abdominal swelling
4. General tiredness, weakness, fatigue
5. Nausea and / or vomiting
6. Rash on the skin of the body

Infection

The intestine naturally contains thousands of bacteria. One of the most difficult parts of transplanting the intestine is that when you put it into the recipients’ body these bacteria can spread and cause infection. Following a transplant you will
be on immunosuppression medication, reducing your body’s defence level against bacteria and making you at greater risk of infections. Therefore, making you more likely to become unwell if the bacteria in the donor intestine spreads.

Signs and symptoms of INFECTION after your transplant:

Fever / high temperature (above 37.5 C or higher), chills or shaking

General tiredness, weakness, fatigue or aching (flu-like symptoms)

Nausea, vomiting or severe diarrhoea

Persistent loss of appetite

Pain, tenderness, swelling or leaking fluid from the wound or any part of your body

Skin or mouth sores

Lumps or blisters

Persistent or productive cough, shortness of breath or chest pain

Sore throat

Burning sensation pain, frequency or difficulty with urination

Urine that is cloudy or has a foul odour.

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