Wessex Bladder Cancer Support
TIPS FOR LIVING WITH A STOMA
There are some positives of having your bladder removed and one of them is your entitlement to a Radar Key to gain access to Radar Key locked toilets. These keys are available from stoma equipment companies and a number of support organisations.
There are many different types and sizes of bags with and without full and half moon flanges to improve seals and a great selection of aids to help with bag changing. Discussions with your Stoma Nurse will help you decide what is right for you and may change as your body size settles down after the operation. All of the Urostomy Equipment suppliers will provide a range of accessories from mattress protectors to bed pads, hand sanitizers, disposal bags, adhesive remover sprays and other aids. Some suppliers will offer a service where they will call you, discuss your requirements, arrange the prescription through your Doctor and then deliver your supplies direct to you. In the early days you will find your Stoma Nurse a valuable contact for advice together with friends from your local support group who have been there and understand your problems.
Frequency of bag changing is a personal issue. Some people change daily, some every other and some as much as every 4 days. Even this may vary as in the early days you will find a fair amount of mucus collects in the bag. - This is quite normal -
You will need a reasonable work space, a table or work top of approx 50cm x 70cm, access to hot water, and approx 10/15 mins. A small folding table can easily be obtained for under £20. You will soon get the hang of it and come up with your own system but the watchword is HYGIENE. Make sure your empty your bag before removing it - less messy, and WASH YOUR HANDS.You want to do everything in your power to avoid a Utinary Tract Infection (UTI). These can be nasty and need a considerable period of antibiotic treatment.
HYGIENE &URINARY TRACT INFECTIONS (UTI's)
The urine in your bag should be the colour of straw which shows that all is Ok and the kidneys are working normally. To help avoid a UTI it is often recommended that you have a high strength dose of Cranberry every day (Either juice or high strength Cranberry Fruit Concentrate Tablets), Supermarkets, chemists and high street stores like Holland & Barrett all stock them. Check this out with your GP first particularly if you are on medications like warfarin. This is especially important when you go on holiday. The last thing you want is a UTI in the middle of the Pacific Ocean on your Cruise of a Lifetime, or in the middle of the Masai Mara on Safari or on the beach in your favourite sunshine resort!
If possible the ideal is to get your stoma nurse to take the sample for you but this is seldom practical so the next best thing is: Remove the stoma bag and carefully clean round the stoma. Bend foward and place a sample bottle below the stoma (Be careful not to let the bottle touch the stoma) Allow the stoma to drip or squirt into the bottle. This may take a few minutes as the stoma is unlikely to behave itself and squirt on demand!. You MUST inform whoever is taking the sample that it is from a stoma. If you have a UTI you need a course of antibiotics for 10/14 days. This is because the formation of the Ileal Conduit is not smooth and needs longer treatment. Your Urology Consultant can explain this to you and advise your GP.
NIGHT BAGS: (For those not using the u-drain system)
You will need to connect your stoma bag to a larger bag to collect urine at night. These bags take 2ltr and are available from your equipment supplier. These come with a long tube which connects direct to the base of the stoma bag at one end and the nightbag at the other end, It is advisable to place the night bag on a stand (Get from your supplier) then in a bowl or on a towel to protect against any leakage. It does restrict movement in bed a bit, but its a great improvement from getting up many times a night to pee or empty your bag. These night bags can be washed out, water and a steriliser like Milton or even washing up liquid, and then re-used. You will need to get hold of a couple of syringes to use in cleaning (try your GP, Nurse, Stoma Nurse, chemist or if all else fails they are quite cheap to buy online.) Night bags don't need changing as frequently as the day bags, ideas vary widely but the average seems to be every 1/2 weeks.
Fristly it always helpful to have an emergency bag/clothes change prepared to take with you when you travel. A lot of people always carry an emergency kit in the car. Prepare a complete kit with a new bag and all the equipment you need to change the bag. A bottle of water in the car is a good idea as is a spare empty bottle in case you run into a traffic jam or other delay and need to empty your bag. equipment suppliers often will give you a suitable carry bag for your emergency kit. - Don't forget hand sanitizer, and if you use it a peal easy spray.
LONG DISTANCE TRAVEL:
With a bit of preparation you can do almost anything you did before the operation.
Concertina type folding Travel Certificates/Passports can be got from equipent suppliers some stoma nurses and support groups. These are written in many languages explaining your condition and special needs. You can get your GP to sign them for you.
As to the quantities of bags that you take this depends on your frequency of bag change, the number of days you are going away for and the climate where you are going. You will also need to allow for accidents. It is rec ommended that you take at least twice as many days as you are going away for. e.g. 14 day holiday - take supplies for 28 days. (Note; You should get aprox. 14 bag changes out of a 50ml peal easy spray for bag removal.). When travelling by air it is recommended that you carry all your urostomy supplies in your/and your partner's hand baggage in case you lose the luggage.
After you have booked your seats, phone the airlines customer service or welfare dept, explaining the operation you have had, the need for possible quick access to a toilet, the extra weight of your prescription equipment, then most of them will issue you an aisle seat close to the toilets and increase your hand luggage allowance there and then . During long journeys it may be advisable eto wear a leg bag attached to your stoma bag this will increase your storage by about 500 ml. You will need to wear trousers to conceal it. These bags are supplied with various length tubes to connect to your stoma bag, and can be washed out like your night bag. Speak to your GP about getting a supply for your holiday.
This is a must. There a several companies who provide insurance but it is a problem. Research on the internet and use of the comparison sites can bring up a list of suitable insurers. Talk to friends in your support group about who they use, and even talk to your current insurance provider.
Just remember, you have had surgery to the abdomen and can be prone to getting a hernia around the stoma. This is because the surgeons cut through the abdominal muscles to form the stoma and this leaves a weakness. Take great care lifting any heavy object or doing heavy manual taks. You can get support belts and even support garments. Talk to others in your support group and also to your stoma nurses as these can sometimes be provided on prescription.
You Have Been Given a Second Chance - So ENJOY it!!