Going home after your pancreatic surgery

You have now recovered enough from your operation to start thinking about going home. This sheet contains useful information for when you are at home.

Before you leave hospital, the surgical team looking after you will want to be sure that:

• all of your wounds are healing properly
• you are eating and drinking sufficiently
• you are going to the toilet ok
• you are managing to look after yourself

If you have concerns about any part of your recovery, please speak to a member of the team.

On the day you go home, you will be given a letter from the nurses on the ward. This letter has a summary of your hospital stay and information about your medications and your outpatient appointments. A copy of this letter will also be sent to your GP.

Medicines

If you require medicines, you will be given a 14-day supply of these to take with you when you leave the hospital. Your nurse will explain to you what they are and how to take them.

You will be given a supply of dalteparin injections to administer each day for 28 days from the operation date. This is to help prevent blood clots in your legs (deep vein thrombosis). You will be taught how to inject yourself once a day before you leave hospital; alternatively the ward will ask a district nurse to inject these for you.

Wounds

If your clips/stitches have not been removed before going home, the ward nurses will advise you to arrange an appointment with your practice nurse to remove them, at the GP surgery.

If you still have a wound that is not completely healed, the ward nurses will arrange for a district nurse to visit you at home to monitor this.

If your wounds are healed, we would ask you to observe them regularly. If you notice:

• increased pain or tenderness
• increased swelling or opening of the wound
• redness or warmth around the wound
• you have a temperature of above 38˚C

a wound infection may be developing and you may need antibiotics so please contact your GP or the HPB specialist nurse.

When bathing or showering do not rub the wound, just let the soapy water run over it. Try to avoid putting perfumed or scented soap or sprays near the wound site until healed, as this may cause irritation.

Pain

It is normal to have some pain around the wound which may last for several weeks and should improve gradually. You will be given some painkillers to take home with you. Take these as directed and if necessary obtain a repeat prescription from your GP. If your pain is not being controlled by the painkillers, or is getting worse, please see your GP or telephone your HPB Specialist Nurse.

Activities

Most people feel tired once they get home. This will slowly reduce over time but it may be about six months before you can fully resume normal activities.

Activity as well as rest is important after your operation. Try to pace your activities throughout the day, avoid long periods without moving during the day but rest when you need to.

It is important to use your muscles to rebuild them but avoid extremes of exercise and heavy lifting to prevent strain on the healing wound. Pain is generally an indicator of how much you can or cannot do. We encourage you to take gentle exercise, such as walking or housework. Build up to your normal lifestyle.

You may not be able to drive for several weeks or months. Check with your doctor before resuming driving. You should also check your car insurance company does not have a time restriction on when you can resume driving after major abdominal surgery. You should make sure you feel able to do an emergency stop safely before you drive.

Eating and drinking

There are no foods which should be totally avoided as a result of your surgery. However you will initially need more energy and protein in your diet to help you heal and recover. Some people find they have a reduced appetite, an altered sense of taste, feel full more quickly or may lose weight.

If you experience any of these, you may find the following helpful:

• Eat what appeals to you and try not to skip meals
• Eating five or six small meals or snacks per day rather than the traditional three main meals
• Aim for high calorie options such as full fat milk, whole oat milk, yogurt, and butter
• Add extra snacks into your day, eg hummus, boiled egg, pate, dips, soup, beans
• Add calories to your food with extra oil, cream, cheese, nut butters or sauces

It is quite normal to have a reduced appetite for several weeks after this operation. If you have any concerns about your diet or weight loss, please call your dietitian, the contact details are below.

The need for extra calories and protein will gradually reduce as you heal. In the long term we recommend you follow a healthy, well-balanced diet as recommended for the general population.

We recommend that anyone who has had a Whipple’s operation or had their whole pancreas removed takes an A-Z multivitamin and mineral supplement lifelong.

Bowels

The pancreas plays an important role in the digestion of food. It produces enzymes that help to break down food so that it can be absorbed in your gut. Having some of your pancreas removed can affect how many of these enzymes are made. This can lead to problems with your digestion and changes to your bowel habits.

The following symptoms can be a sign that you do not have enough enzymes to digest what you have eaten;

• Losing weight, despite eating well
• Loose and/or urgent stools
• Pale, orange, yellow, oily or bulky stools
• Foul smelling stools or wind
• Stools which float and/or are difficult to flush away
• Abdominal pain, wind and bloating
• Very variable blood glucose levels

If any of these symptoms occur it is important to highlight them to your dietitian, doctor or specialist nurse, who can give you more information. There are capsules you can take with your food which contain these enzymes. They are called Creon, Nutrizym 22, Pancrease HL or Pancrex V. They help you to digest what you eat, alleviate the symptoms described above and nourish you. If you are already taking these capsules and get these symptoms, tell your dietitian, you may benefit from taking more or changing medications.

Going home with the drain(s)

There is a risk of a leak of pancreatic fluid from the cut surface of the pancreas gland or where it has been joined with the small intestine (pancreatic anastomosis). For the majority of people, the leak is minor and can be controlled by the drains placed at the time of the operation. If you are otherwise well, you can go home with the drain in place, this can be looked after by the district nurses or your practice nurse at the GP surgery. If you are to be discharged with a drain, the nurses looking after you on the ward will arrange for the district nurses or practice nurse to look after it. We ask you to make a note of the colour and amount of fluid coming out of the drains each day, for an accurate assessment of the leak.

You will be seen in the outpatient clinic on a regular basis to monitor your progress until the drain can be removed. Most people have the drains removed between two and six weeks after going home. If you are finding it difficult to manage the drain at home or have any concerns regarding the fluid coming out of the drain, please contact the HPB specialist nurses.

Follow-up appointments

After discharge from hospital you will receive a telephone call from one of the surgeons and on a separate occasion, one of the HPB specialist nurses, to see how you are doing at home. If you have had cancer removed during your surgery, you will usually be recommended to meet with an oncologist (cancer doctor) to discuss possible treatment once you have recovered from the operation.

If you do not receive a follow-up appointment for the telephone call with the surgeon, please contact the HPB secretaries.

Support and contacts once at home

After your discharge from hospital you may come across things that you or your family would like to discuss with someone. The team are here to help you and are happy to answer any questions you might have.

You can contact the hospital team on the following numbers:

HPB specialist nurses: 01223 256147

HPB secretaries: 01223 217862/ 257074

HPB administrator 01223 257103

HPB dietitians: 01223 216655

During the weekend and out of office-hours please contact your GP/ 111 who will contact the on-call surgical team if needed.

Below are some reasons to call for advice with information on who to call with each query and highlighting those that should be done urgently.

Reasons to call GP or 111

• Feeling unwell and dizzy
• Chest infection
• Wound infection

Reasons to call 999 or attend A&E

• Blood in drain / drain fallen out
• Feel very weak and unable to get out of bed
• Increased abdominal pain
• Sudden onset of vomiting and collapse / feeling unwell
• Increased temperature and shivering /low body temperature ( with or without) light-headedness/ rapid heartbeat/mottled skin/ shortness of breath
• Swelling of a leg /Increase in size of calf / redness / swelling / warm /red or darkened skin around painful area with or without shortness of breath