The Operation and Recovery
Prior to the operation
You must be sure you are making the right decision based upon the information your specialist team has discussed with you and what is right for you long term. Make sure you have asked all the questions and have all the information you need. If you are unsure of anything you must find out prior to signing a consent form.
You will be referred to a Clinical Nurse Specialist within the hospital trust. This will be to discuss the surgery and your life with a Mitrofanoff. A date will then be booked for surgery.
You will have a pre-assessment appointment approximately two weeks prior to your admission, the nurse will talk to you about any questions and worries you may have. You will then go through your personal details to ensure they are correct and confirm your general health is good. A routine MRSA screening will also be carried out to confirm you are fit for surgery. Once all the details are correct and the nurse is happy, you will be given your admission letter and information.
Each surgeon will have a different bowel preparation. This may involve eating a low residue diet on the third and second day before the surgery and only have a liquid diet the day before. You must also ensure your bowels are opened daily prior to the operation, as it will be a few days after the surgery that you will open them again. If you are irregular you may need a prescription to get something to help - make an appointment with your GP.
It is important to take enough belongings into hospital with you, such as a change of clothing, nightclothes, socks and slippers, any special drinks and a book to keep you going for 10-14 days. Try not to take any valuables.
The day of the operation
Your admission will either be on the morning of the operation or the day before, depending on the hospital’s protocol. The surgeon or registrar will see you prior to going into theatre to make sure you are happy and you will have to sign a consent form.
The anaesthetist will come to discuss the general anaesthetic and pain relief for after the operation. You will be given the choice of an epidural infusion, this is a needle which goes in the bottom of the back, administered in the anaesthetic room or a patient controlled analgesia (PCA) is a hand held device, which is usually morphine, both for pain relief, which you will have for the first few days, to make you comfortable.
Remember, you must tell the doctors of any allergies.
When it is time for you to go to theatre the nurse and the hospital porter will take you to the anaesthetic room.
The nurse and hospital porter will then leave you with the anaesthetist and their assistant. If you have opted for an epidural infusion this will be administered, a needle will be put into your hand or arm where the general anaesthetic will be administered. The other lines, drips, etc. will be put in once you are asleep.
If you have already had your appendix removed or if it is not suitable, the surgeon may need to use a piece of the small bowel to create the urethra or even a fallopian tube.
The surgeon will disconnect your appendix from its usual position on the small bowel and open it up to form a tube. It will then be connected one end to a small incision in the bladder and the other end to another small incision in your abdomen. The surgeon will then create a valve where the tube joins the bladder, which squeezes shut as the bladder fills with urine. This will reduce the chance of urine leaking from the stoma.
If the capacity of the bladder is too small or needs to be removed because it is diseased, the surgeon will have to take some bowel to increase the size of the bladder.
You will be away from the ward for approximately 3 – 6 hours, although it may take longer if you are having other procedures in-conjunction with this, such as bladder augmentation.
Are There Any Risks?
All surgery carries an element of risk, however this must be balanced against the quality of life without surgery. All surgery carries a risk of bleeding during or after the operation. General anaesthetic carries a risk of complication but this is very small. The anaesthetist is a highly experienced doctor who is trained to deal with any complications.
After an anaesthetic, you may feel sick and vomit. You may have a headache, sore throat or feel dizzy. These side effects are usually short-lived and not severe.
After The Operation
You will go straight to recovery and this is where you will wake up and stay until the doctor thinks you are ready to go to the ward. You may have to go to Intensive Care for a night for constant monitoring, but if you do, do not worry, this is perfectly normal for some patients.
When you wake up you will be aware that you have a number of different tubes in your body, so do not panic (you should also make people aware of this before they come to visit you in hospital):
You will have an Intravenous drip giving fluids and medication, for the first few days, until the bowel starts to recover. The drip will be removed when you start eating and drinking properly.
You will have an epidural infusion or a patient controlled analgesia (PCA), for the first few days, to make you comfortable.
A Robinson drain, sits inside the abdomen to collect any fluid inside. This will be taken out after approximately five days.
A nasogastric tube goes into your stomach and helps prevent sickness. This will be removed after approximately five days.
If you have a neo bladder there will also be both left and right ureteric catheters, up to the kidneys, and these are removed after seven days.
You will have an intravenous infusion for a few days until you can start eating and drinking normally.
The surgeon will have inserted a catheter into the Mitrofanoff to keep it open. This should stay in place for six weeks after the operation. You will also have a supra pubic catheter for six weeks after the operation, to allow the bladder and Mitrofanoff to heal. During this time one of the catheters will be connected to a collection bag, so urine can drain freely from the bladder. The other will be closed off with a spigot and care should be taken to secure this from slipping off with a suitable dressing.
It is quite common to have bladder spasms after this type of surgery, and to leak a small amount of urine, which may be tinged with blood. These are quite normal, you will be able to get some medication to deal with the bladder spasms before going home. A few days after the operation, paracetamol or ibuprofen should be enough to deal with any remaining discomfort.
You may have daily injections to thin the blood while you are in hospital, either injected into the upper arm or the stomach depending on the hospital protocol.
You will be provided with elasticated stockings to prevent blood clots forming in the legs.
In the days following the operation, a physiotherapist will come to see you to show you breathing and leg exercises to prevent complications.
You will feel some pain, discomfort, weakness and also feel very tired, but this will improve as the days go on.
Looking After Your Mitrofanoff
The nurse will flush saline water into the bladder twice a day for the first three days, on the fourth day they will start bladder wash outs and show you how to do this.
The Mitrofanoff needs to be treated as a wound. Before you go home the nurse will show you how to take care of it. When you are able to strip wash do not soak it in soap and water. Wash around the area with care, when drying dab dry with a sterile dressing, to prevent infection, and making the site sore.
You should drink between 2 – 3 litres a day and reduce consumption of fizzy drinks and caffeine as this can help reduce any irritation. Cranberry juice is good for the bladder and can help reduce irritation and infections.
When Going Home
When the wounds have started to scab, you will be able to have a shower. When doing so make sure you wash around the area with care and when drying dab dry carefully with a sterile dressing, to prevent infection and making the site sore.
You may have steri-strips over the scar, they will fall off on their own accord. Do not try taking them off. Leave them for as long as possible.
You will be asked to observe the wound and visit your GP if infection occurs where they may issue antibiotics. The district or community nurses may visit you at home to check your wound, dressings and general well-being.
You will see your surgeon approximately three months after your surgery.
Starting To Use Your Mitrofanoff
Six weeks after your operation you will have to go back to the hospital to have the Mitrofanoff and the supra pubic catheters removed and then you will start learning how to catheterise through your Mitrofanoff.
You will have a lot to learn about your Mitrofanoff and it may feel very daunting to begin with, however it will not take long before it comes as second nature.
The nurse will give you enough supplies of what you need to go home. Then you should register with a home delivery service such as Fittleworth, Bullens, Select, Salts or Nightingale. Once you have registered you will then receive your supplies which will be delivered straight to your home.
You should catheterise at least 2 – 4 hourly throughout the day, do not leave it longer than this as there is a risk of infection and / or leakage.
It will take about four weeks before you can hold a good capacity.
You should drink at least 2 – 3 litres a day, to prevent irritation and infections.
Assemble the equipment you will need – catheter, lubricating jelly (if your catheter is not pre – lubricated)
Wash your hands thoroughly
Sit or stand over the toilet
Lubricate the end of the catheter if necessary
Gently insert the catheter into the Mitrofanoff and guide it into the bladder
Try not to apply too much force when inserting the catheter as it may create a false channel
Allow the urine to drain
Slightly move the catheter in the bladder when it has stopped draining to make sure the bladder is completely empty
When the bladder is empty remove the catheter carefully
Cover and dispose of the catheter
Wash your hands
When going home you will still feel very weak. You will get stronger every day. You must try to do a little bit more each day to increase and keep building your strength and stamina. Your body will tell you when you are doing too much or you need a rest. You may need to have afternoon naps for the first few weeks. Try to get out and have some fresh air while increasing your walking distance daily.
Your appetite may be slow for some time after, so take supplements if needed. Eat as much fruit and vegetables as possible.
Within the first 6 weeks you will not be able to do any lifting or driving. Full recovery will take 3 – 12 months depending on the surgery involved.
There is a chance the Mitrofanoff could be difficult to catheterise, if the opening is too narrow or the valve too tight. This affects about a quarter of patients with a Mitrofanoff but it is easy to correct.
The Mitrofanoff may shrink slightly after the operation, which is common. In some people the Mitrofanoff may need to be stretched.