The operation

If you are considered suitable for the surgery then the following section will explain to you what will happen.

Scheduling your operation

If you are suitable to have surgery, it will be scheduled to take place as soon as possible.

If you need any additional investigations they will be organised by either your surgeon or nurse specialist. You will be asked to attend a pre-assessment clinic before your admission to hospital.

What does pre-assessment testing involve?

A nurse will ask you questions check your blood pressure, pulse and temperature and take routine swabs for MRSA screening.

A doctor will complete all relevant documentation and any further tests that you will need.  These include further blood tests, a heart recording (ECG) and chest X-ray (to check your lungs) and a cardiopulmonary exercise test.

Consent

You will be asked to give your consent to allow the surgeon to operate on you.

Before any operation, make sure that you have discussed it fully with your surgeon so that you understand what is involved. This is the time when you should ask further questions about the risks involved.

As with any surgery there are specific risks that are associated with the anaesthetic, the surgery and islet transplantation and with the recovery. When you sign the consent form, you should ensure that you understand clearly what you are signing for.

Anaesthesia for islet autotransplantation

Before your surgery your anaesthetist will visit you. This is the doctor that keeps you unconscious during your operation and looks after all your bodily systems such as breathing and heart function while you have surgery.

The anaesthetist will do everything possible to keep you safe during the operation. Before your surgery they will ask you questions about your general health and examine you. T

he anaesthetist will explain what is involved with the anaesthetic and will discuss your options for pain relief. You will be asked not to drink or eat anything for eight hours before the operation to ensure that your stomach is empty so that you can be safely put to sleep with a general anaesthetic.

The operation

To enable the surgeon to perform this operation safely, they must be able to see the pancreas clearly.

For this reason a large cut (incision) known as a roof top incision will be made across your upper abdomen under the ribcage. You will not receive a blood transfusion unless it is absolutely necessary but often it is needed during pancreatic surgery.

The length of the operation depends on how diseased your pancreas is. It can take between eight and twelve hours to perform the surgery and the islet autotransplantation.

At the end of the operation your surgeon will telephone a relative or friendn of your choice to explain what was found and what has been done.

The whole pancreas is removed usually (but not always) along with the spleen and part of the duodenum.

If the spleen is removed you will need to have immunisations to reduce the risk of any infections such as a flu jab and take low dose penicillin antibiotics. Sometimes the spleen can be preserved.

The average length of stay in hospital after surgery on your pancreas surgery is between 14 and 21 days.

What are the risks of the operation?

As with any operation, complications are always possible and some of them are potentially serious.

With this type of operation, they can include:

• 1-2% mortality (death) rate related to pancreas surgery. These figures come from specialist centres across the world including our own
• bleeding (usually from the pancreatic bed or liver after islets are injected)
• infection
• leakage from the areas joined back together with stitches
• pneumonia
• heart problems and stroke
• clots in the legs and lungs (deep vein thrombosis and pulmonary embolism)
• clots in the liver veins (1%)

What should I expect after the operation?

After your operation you will wake up in the intensive care unit (ITU) and spend a few days there.

This is because after major surgery such as pancreas surgery, the doctors and nurses will need to keep a very close check on your bodily functions. Immediately after the operation you will be on a ventilator (life support machine which helps you breath) to rest your body due to the length of your surgery.

You will usually be taken off this the following morning and allowed to breathe on your own.

As soon as you are well enough a member of the surgical team will discuss your operation in detail with you.

When you wake up after the surgery you will also have the following:

• A tube called a nasogastric tube (NG), in your nose going into your stomach. This tube drains the fluid that naturally accumulates in your stomach. You will have the NG tube for a couple of days and it may be uncomfortable

• A catheter (a soft, flexible tube) in your bladder to drain urine. This will save you having to get up to pass urine. The catheter is usually taken out after a few days

• An intravenous (IV) line into a vein in your neck and arm to give you fluids until you begin drinking fluid and eating again

• Tube drains in your abdomen to remove excess fluid following surgery.  The nurses will be regularly measuring the amount of fluid in these drains.  The tube drains will be removed within a few days, once they are draining minimal amounts of fluid

• An intravenous (IV) line into a vein in your neck to give you insulin which is called sliding scale insulin. This is to allow your newly transplanted islet to settle down in your liver and rest until they recover and start to work and produce insulin. The sliding scale insulin will continue for at least seven days and until you begin drinking fluid and eating properly again.

Will I need insulin after my operation?

This will depend on how successful your islet autotransplantation has been and how many islets were transplanted. This information will be given to you after your surgery.

In a few patients, the islets start to secret insulin as soon as they have been transplanted, whereas in others the islets do not function so well and they will always have to inject insulin (although in a small number of cases this may reduce over time).

Pain control

When you wake up you will notice immediately that the pain from your pancreas has gone although you may have some pain (this pain will be different and due to your surgery).

After this type of surgery it is not uncommon to experience significant pain or discomfort in the first few days, which can be quite difficult to control, due to the longstanding need for painkillers for your chronic pancreatitis before your operation.

This is a particular problem in patients who need such high doses of strong painkillers because the condition is so painful and it takes a while after your operation to get your pain under control.

You will be given painkillers for several days after the operation to control the pain due to your operation.

Pain relief after pancreas surgery is usually given in the form of an epidural, which is a method of providing continuous pain relief. The epidural is a fine length of tubing, which is inserted into a small space in your backbone. The epidural tubing is connected to a pump which automatically delivers pain-relieving medication to you and should give continuous pain relief.

When you wake up from your operation you will be connected to a pump and you will receive your painkillers without the need for you to do anything.

You will have pain-relieving epidural for as long as you need it, but most patients move on to tablets after a few days. It is very important that your pain is controlled enough to enable you to walk, cough and breathe deeply.

Physiotherapy

Soon after your operation you will be helped out of bed to a chair and then encouraged to walk a short distance with help from the physiotherapist or nurse.

Walking soon after surgery helps improve circulation, prevents blood clots, and stimulates bowel functions. You will be encouraged to do coughing and deep breathing exercises all of which help to prevent chest infections or pneumonia.

Your diet

Once your bowels begin to work again, you will be allowed to drink sips of clear fluids and gradually advance to a normal diet.

At first you will not be able to eat the same portions of food you did before the surgery. Many patients lose weight before the operation and during the first couple of weeks after surgery.

You will regain the weight slowly as your appetite and capacity for food improves. You will also need to continue taking pancreatic enzymes by mouth to help your digestion.

Going home

Once you tolerate a normal diet, move your bowels, can manage your own blood sugars and give yourself insulin (if necessary) and show no signs of complications, you will be ready to go home.

Your doctor will give you discharge instructions and prescriptions for any medication you need. Your nurse will review these instructions with you. If you need a visit by a district nurse when you are at home, it will be arranged before you leave hospital.

Special considerations

Fatigue

Feeling tired (fatigue) is the most common complaint following pancreas surgery, and is expected. You may need a nap during the day, but try to stay out of bed as much as possible so you will sleep at night.

It usually takes six to twelve weeks until your energy levels return to normal.

Decreased appetite

It is common to have a decreased appetite after surgery. Try eating smaller meals that have each of the four groups (i.e. fruits/vegetables, meat/chicken/fish, breads/grains and dairy products).

Alcohol

Alcohol may be consumed in moderation but please check with your doctor before doing so.

Pain relief

You will be discharged home on the same amount of painkillers that you were taking before your operation.

This is because over the years your body becomes addicted to the painkillers and weaning them off too soon after your surgery can often set your recovery back.

In many cases it can result in some patients requiring higher does of pain relief in the short term. We will monitor your pain management during your follow-up appointments and advice you when to start reducing them.

It can take between six months to a year before we encourage you to begin this weaning process and we advise that you reduce your painkillers by 25% each month until you have stopped them completely.

Please remember that some painkillers cause constipation so take extra fluids and fibre in your diet.

Numbness

This is normal to have numbness of the skin below the incision because some of the nerves were cut. This sensation will diminish over time but there may be some permanent numbness below the middle of your cut.

Exercise

Exercise will help you gain strength and feel better. Walking is recommended. Check with your doctor or clinical nurse specialist before resuming any strenuous exercise. Do not lift anything heavier than 2kg for six weeks.

Driving

It may be a number of weeks before you are able to drive again. We recommend that you contact your insurance company for advice before starting to drive.

• A temperature above 38°C
• Uncontrolled blood sugars
• Redness or leakage from your wound
• Any increase in pain or new pain
• Uncontrolled nausea or vomiting
• Any new or unexplained symptoms

Follow-up appointments

Consultant surgeon

Usually your first appointment after your operation with your consultant should be within 6 to 8 weeks after you leave hospital.

You will receive this appointment through the post. After your first appointment, your next appointments will be every three months up to one year and then every year up to ten years.

At each visit your consultant will organise for you to have an ultrasound scan and blood tests before your next visit. After ten years you will be discharged.

Diabetes care team

The diabetes care team will make the necessary arrangements for you to be followed up in respect of your diabetes management following your discharge from hospital.

Before discharge you will be given the contact numbers of the diabetes care team. Once your blood sugars are stable you will then be discharged back into the care of your general practitioners.

Contact numbers and further information

Main Hospital: 0191 233 6161

HPB Office/Nurse Specialists: 0191 213 7333

Consultants

Professor Steve White – Tel: 0191 213 7074

Mr Colin Wilson – Tel: 0191 213 1866

Professor Jim Shaw – Tel: 0191 282 6466

Dr Angeles Maillo-Nieto

Dr Richard Makin

Dr Jocelyn Buckingham – Tel: 0191 282 4081

Dr Kofi Oppong – Tel: 0191 213 1391