Showing posts with label Living With. Show all posts
Showing posts with label Living With. Show all posts

Urinary catheter - Living With

Living with-Urinary catheter




It’s possible to live a relatively normal life with a long-term urinary catheter, although it may take some getting used to at first.
Your doctor or a specialist nurse will give you detailed advice about looking after your catheter.

Catheter equipment

You'll be given a supply of catheter equipment when you leave hospital, and you'll be told where you can get more supplies from. Catheter equipment is generally available on prescription from pharmacies.
You'll also be shown how to empty and change your equipment.

Intermittent catheters

Intermittent catheters are usually designed to be used once and then thrown away.
How to use them varies from person to person. You may be advised to use them at regular intervals spaced evenly throughout the day, or only when you feel you need the toilet.
The British Association of Urological Surgeons (BAUS) website has more detailed leaflets on self-catheterisation in men (PDF, 158kb) and self-catheterisation in women (PDF, 160kb).

Indwelling catheters

Indwelling catheters can either drain into a bag attached to your leg, which has a tap on the bottom so it can be emptied, or they can be emptied into the toilet or suitable receptacle directly using a valve.
You should empty the bag before it's completely full (around half to three-quarters full). Valves should be used to drain urine at regular intervals throughout the day to prevent urine building up in the bladder. Leg bags and valves should be changed every seven days.
The bag can be attached to your right or left leg, depending on which side is most comfortable for you. 
At night, you'll need to attach a larger bag. Your night bag should either be attached to your leg bag or to the catheter valve. It should be placed on a stand next to your bed, near the floor, to collect urine as you sleep.
Depending on the type of night bag you have, it may need to be thrown away in the morning or it may be emptied, cleaned and reused for up to a week.
The catheter itself will need to be removed and replaced at least every three months. This is usually done by a doctor or nurse, although sometimes it may be possible to teach you or your carer to do it.
The BAUS website has a more detailed leaflet about the management of urethral catheters (PDF, 173kb).

Preventing infections and other complications

Having a long-term urinary catheter increases your risk of developing urinary tract infections (UTIs), and can also lead to other problems, such as blockages.
To minimise these risks you should:
  • wash the skin in the area where the catheter enters your body with mild soap and water at least twice a day
  • wash your hands with warm water and soap before and after touching your catheter equipment
  • make sure you stay well hydrated – you should aim to drink enough fluids so that your urine stays pale
  • avoid constipation – staying hydrated can help with this, as can eating high-fibre foods, such as fruit and vegetables and wholegrain foods
  • avoid having kinks in the catheter and make sure any urine collection bags are kept below the level of your bladder at all times
Read more about the risks of urinary catheterisation.

Your regular activities

Having a urinary catheter shouldn’t stop you from doing most of your normal activities. You'll be advised about when it's safe for you to go to work, exercise, go swimming, go on holidays, and have sex.
If you have an intermittent catheter or a suprapubic catheter, you should be able to have sex as normal.
Indwelling catheters can be more problematic, but it’s still usually possible to have sex with them in place. For example, men can fold the catheter along the base of their penis and cover them both with a condom.
In some cases, you may be taught how to remove and replace the catheter so you can have sex more easily.

When to get medical advice

Contact your community nurse (the hospital or your GP practice can give you a number to call) or your GP practice if:
  • you develop severe or ongoing bladder spasms (similar to stomach cramps)
  • your catheter is blocked, or urine is leaking around the edges
  • your urine is bloodstained or has specks of blood in it (you may have accidentally pulled on your catheter); contact your community nurse if you continue passing bloodstained urine or urine with blood specks
  • you’re passing bright red blood (contact your GP as soon as possible)
  • you have symptoms of a UTI, such as lower abdominal pain, a high temperature and chills
  • your catheter falls out (if it’s indwelling and you haven’t been taught how to replace it)
Go to your nearest accident and emergency (A&E) department if your catheter falls out and you can’t contact a doctor or nurse immediately.
Read more about the risks of urinary catheterisation.

Support groups and further information

Living with a catheter can be challenging. You may find it useful to get more information and advice from support groups and other organisations.
For example, the Bladder and Bowel Foundation provide information and support for people with bladder and bowel conditions.
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Ulcerative colitis - Living With


Living with-Ulcerative colitis




There are a few things you can do to help keep symptoms of ulcerative colitis under control and reduce your risk of complications.

Dietary advice

Although a specific diet is not thought to play a role in causing ulcerative colitis, some changes to your diet can help control the condition.
For example, you may find it useful to:
  • eat small meals – eating 5 or 6 smaller meals a day, rather than 3 main meals, may help control your symptoms
  • drink plenty of fluids – it's easy to become dehydrated when you have ulcerative colitis, as you can lose a lot of fluid through diarrhoea; water is the best source of fluids, and you should avoid caffeine and alcohol, as these will make your diarrhoea worse, and fizzy drinks, which can cause flatulence(gas)
  • take food supplements – ask your GP or gastroenterologist if you need food supplements, as you might not be getting enough vitamins and minerals in your diet

Keep a food diary

Keeping a food diary that documents what you eat can also be helpful. 
You may find you can tolerate some foods while others make your symptoms worse.
By keeping a record of what and when you eat, you should be able to identify problem foods and eliminate them from your diet.
But you should not eliminate entire food groups (such as dairy products) from your diet without speaking to your care team, as you may not get enough of certain vitamins and minerals.
If you want to try a new food, it's best to only try 1 type a day because it's then easier to spot foods that cause problems.

Low-residue diet

Temporarily eating a low-residue or low-fibre diet can sometimes help improve symptoms of ulcerative colitis during a flare-up.
These diets are designed to reduce the amount and frequency of the stools you pass.
Examples of foods that can be eaten as part of a low-residue diet include:
  • white bread
  • refined (non-wholegrain) breakfast cereals, such as cornflakes
  • white rice, refined (low-fibre) pasta and noodles
  • cooked vegetables (but not the peel, seeds or stalks)
  • lean meat and fish
  • eggs
If you're considering trying a low-residue diet, make sure you talk to your care team first.

Stress relief

Although stress does not cause ulcerative colitis, successfully managing stress levels may reduce the frequency of symptoms.
The following advice may help:
  • exercise – this has been proven to reduce stress and boost your mood; your GP or care team can advise on a suitable exercise plan
  • relaxation techniques – breathing exercises, meditation and yoga are good ways of teaching yourself to relax
  • communication – living with ulcerative colitis can be frustrating and isolating; talking to others with the condition can help
For more information and advice, see:

Emotional impact

Living with a long-term condition that's as unpredictable and potentially debilitating as ulcerative colitis can have a significant emotional impact.
In some cases, anxiety and stress caused by ulcerative colitis can lead to depression.
Signs of depression include feeling very down, hopeless and no longer taking pleasure in activities you used to enjoy.
If you think you might be depressed, contact your GP for advice.
You may also find it useful to talk to others affected by ulcerative colitis, either face-to-face or via the internet.
Crohn's and Colitis UK is a good resource, with details of local support groups and a large range of useful information on ulcerative colitis and related issues.

Fertility

The chances of a woman with ulcerative colitis becoming pregnant are not usually affected by the condition.
But infertility can be a complication of surgery carried out to create an ileo-anal pouch.
This risk is much lower if you have surgery to divert the small intestine through an opening in your abdomen (an ileostomy).

Pregnancy

The majority of women with ulcerative colitis who decide to have children will have a normal pregnancy and a healthy baby.
But if you're pregnant or planning a pregnancy, you should discuss it with your care team.
If you become pregnant during a flare-up or have a flare-up while pregnant, there's a risk you could give birth early (premature birth) or have a baby with a low birthweight.
For this reason, doctors usually recommend trying to get ulcerative colitis under control before getting pregnant.
Most ulcerative colitis medications can be taken during pregnancy, including corticosteroids, most 5-ASAs and some types of immunosuppressant medication.
But there are certain medications, such as some types of immunosuppressant, that may need to be avoided as they're associated with an increased risk of birth defects.
In some cases, your doctors may advise you to take a medicine that's not normally recommended during pregnancy.
This might happen if they think the risks of having a flare-up outweigh the risks associated with the medicine.
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Tracheostomy - Living With

Living with-Tracheostomy




It's possible to enjoy a good quality of life with a permanent tracheostomy tube.
However, some people may find it takes time to adapt to swallowing and communicating.
Your care team will talk to you about possible problems, the help that's available, and how to look after your tracheostomy.

Speech

It's usually difficult to speak if you have a tracheostomy. Speech is generated when air passes over the vocal cords at the back of the throat.
But after a tracheostomy most of the air you breathe out will pass through your tracheostomy tube rather than over your vocal cords.
One solution is to use a speaking valve, which is an attachment that sits at the end of the tracheostomy tube and is designed to temporarily close every time you breathe out. This prevents the air leaking out of the tube and allows you to speak.
It can take a while to get used to speaking with the valve. You may be referred to a speech and language therapist for advice and training to help you learn to speak while the tracheostomy tube is in place.

Eating

Most people will eventually be able to eat normally with a tracheostomy, although swallowing can be difficult at first.
While in hospital, you may start by taking small sips of water before gradually moving on to soft foods, followed by regular food.
If you have swallowing difficulties, a speech and language therapist can teach you some techniques that may help.

Physical activity

After having a tracheostomy you should be able to continue doing everyday activities, but should avoid vigorous activities for about six weeks after the procedure.
It's very important to keep your tracheostomy opening clean and dry when you're outside. The opening will usually be covered with a dressing.
You could also wear a loose piece of clothing, such as a scarf, to stop substances such as water, sand or dust entering the opening and causing breathing problems.

Cleaning the tracheostomy tube

A tracheostomy tube needs to be cleaned regularly to stop it becoming blocked with fluid and mucus. This may need to be done several times a day.
A specialist tracheostomy nurse will teach you how to take care of your tracheostomy tube before you leave hospital, including how to suction fluid from your windpipe (trachea) and how to clean and change the tube.
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Thalassaemia - Living With

Living with-Thalassaemia




There are a number of things you can do to help you stay as healthy as possible if you have thalassaemia.

Healthy lifestyle

To help reduce your chances of developing some of the problems associated with thalassaemia, it's a good idea to:
  • have a healthy, balanced diet – you do not usually need a special diet, although sometimes you may be advised to take supplements such as folic acid, calcium or vitamin D
  • exercise regularly – regular exercise, particularly weight-bearing and aerobic exercise, can help strengthen bones and reduce the risk of osteoporosis
  • avoid smoking and drinking excessive amounts of alcohol – this can help keep your bones and heart healthy
  • try to avoid infection – wash your hands with soap and water regularly, avoid close contact with sick people when possible, and ensure all your vaccinations are up-to-date
Make sure you take your medicine as advised and attend all of your check-ups.

Pregnancy and contraception

Women with thalassaemia major or other severe types can have a healthy pregnancy, but it's a good idea to speak to your care team for advice first because:
  • it may be useful to find out if your partner is a carrier of thalassaemia and discuss the effects of this with a genetic counsellor
  • some people with thalassaemia need fertility treatment to help them get pregnant
  • during pregnancy there's an increased risk of problems, such as heart problems in the mother and growth problems in the baby 
  • you may need extra monitoring and changes to your treatment during pregnancy
If you're not planning a pregnancy, use a reliable form of contraception.

Precautions before you have surgery

It's important to let your healthcare team know if you need to have an operation under general anaesthetic at any point.
You should also tell your surgeon that you have thalassaemia.
This is because general anaesthetic can cause problems such as an increased risk of blood clots for people with thalassaemia.
You may need close monitoring during surgery and a blood transfusion before or afterwards to reduce the risk of complications.

When to get medical advice

It's important to make sure you know when to get medical advice and where to go, as thalassaemia can cause a number of serious problems that can appear suddenly.
Symptoms to look out for include:
Contact your GP or healthcare team immediately if you develop any of these symptoms.
If this is not possible, go to your nearest A&E department. 
If you're not well enough to travel to hospital yourself, dial 999 for an ambulance.
Make sure the medical staff looking after you are aware that you have thalassaemia.
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Stomach cancer - Living With

Living with-Stomach cancer




Being diagnosed with cancer is a tough challenge for most people, but support is available to help you cope.
You may find the following advice helpful:
  • keep talking to your friends and family – they can be a powerful support system
  • talk to others in the same situation
  • research your condition
  • set reasonable goals
  • take time out for yourself
Cancer charities, such as Macmillan Cancer Support, are a good source of information and support and can provide further details about local information and support services.

Recovery and follow-up

Recovery

Getting back to normal after surgery can take time. It's important to take things slowly and give yourself time to recover. During your recovery, avoid lifting heavy things such as children or shopping bags, and strenuous tasks such as housework. You may also be advised not to drive.
Some other treatments, particularly chemotherapy and radiotherapy, can make you very tired. You may need to take a break from some of your normal activities for a while. Don't be afraid to ask for practical help from family and friends.

Follow-up

After your treatment has finished, you'll be invited for regular check-ups, usually every 3 months for the first year. During the check-up, your doctor will examine you and may arrange blood tests or scans to see how you're responding to treatment.

Diet after surgery

If you've had an operation to remove part of your stomach (partial gastrectomy), you'll only be able to eat small amounts of food for a while after your operation. This is because your stomach won't be able to hold as much food as it could before the surgery, and your body will need to adjust to its new stomach capacity. You should gradually be able to increase the amount you eat as your stomach begins to expand.
If you've had surgery to remove all of your stomach (total gastrectomy), it may be some time before you can eat normally again. As with a partial gastrectomy, you'll only be able to eat small amounts of food until your body adjusts. You may have to eat little and often, and make changes to the types of food you eat. Your care team will be able to advise you about what and when you should eat.
Having surgery to remove your stomach also means you'll need to have regular injections of vitamin B12. Vitamin B12 is usually absorbed through your stomach from the food you eat and is needed to help prevent a condition called anaemia and nerve problems.

Relationships with others

It's not always easy to talk about cancer, either for you or your family and friends. You may sense that some people feel awkward around you or avoid you. Being open about how you feel and what your family and friends can do to help may put them at ease. Don't feel shy about telling them you need some time to yourself, if that's what you need.

Money and financial support

If you have to stop work or cut down your hours because of your illness, you may find it hard to cope financially. If you have cancer, or you're caring for someone with cancer, you may be entitled to financial support:
  • if you have a job but can't work because of your illness, you're entitled to Statutory Sick Pay from your employer
  • if you don't have a job and can't work because of your illness, you may be entitled to Employment and Support Allowance
  • if you're caring for someone with cancer, you may be entitled to Carer's Allowance
  • you may be eligible for other benefits if you have children living at home or if you have a low household income
Find out as early as possible what help is available to you. Speak to the social worker at your hospital, who will be able to give you the information you need.

Free prescriptions

People being treated for cancer are entitled to apply for an exemption certificate, which gives them free prescriptions for all medication, including medicine for unrelated conditions.
The certificate is valid for 5 years, and you can apply for it through your GP or cancer specialist.
Further information

Talk to others

Your GP or nurse will be able to answer any questions you have and reassure you. You may find it helpful to talk to a trained counsellor or psychologist, or to someone at a specialist helpline. Your GP surgery will have details about these. Some people find it helpful to talk to others who have stomach cancer, either at a local support group or on an internet forum.

Caring for someone with stomach cancer

Being a carer isn't easy. Responding to the needs of the person you're caring for can be both emotionally and physically tiring, and it can be easy to forget your own health and mental wellbeing.
Trying to combine caring with a paid job or looking after a family can cause even more stress.
Putting yourself last on the list doesn't work over the long term. If you're caring for someone else, it's important to look after yourself and get as much help as possible. It's in your best interests and those of the person you're caring for.

Looking after yourself

Eat regularly and healthily. You may not have time to sit down for every meal, but you should make time to do so at least once a day.
It's understandable if there are times when you feel resentful, and then guilty for feeling so. You may also feel exhausted, isolated and worry about the person you care for. Remember: you're human, and those feelings are natural.

Getting help and support

When you're caring for someone, friends and family aren't always able to understand what you're going through. It can sometimes help to talk to people in the same situation as you.
Read a guide to care and support for more information about some of the issues that affect long-term carers.
You can also call the Carers Direct helpline (0300 123 1053) if you need help with your caring role and want to talk to someone about the options available to you.

Carers' benefits

If you're caring for someone with cancer, you may be entitled to Carer's Allowance.
Your GP and social services will also be able to advise you about any benefits that you may be eligible to receive.

Dealing with dying

If your stomach cancer can't be cured, your GP will give you support and any necessary pain relief (often alongside chemotherapy or radiotherapy, which can be used to reduce your symptoms). This is called palliative care.
Support is also available for your family and friends.
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Sickle cell disease - Living With

Living with-Sickle cell disease




There are a number of things you can do, and precautions you can take, to stay as healthy as possible if you have sickle cell disease.

Managing sickle cell pain

You can reduce your risk of painful episodes (sickle cell crises) by avoiding things that can trigger them.
Try to:
  • drink plenty of fluids, particularly during hot weather – dehydration increases the risk of a sickle cell crisis
  • avoid extreme temperatures – you should dress appropriately for the weather and avoid sudden temperature changes, such as swimming in cold water
  • be careful at high altitudes – the lack of oxygen at high altitudes may trigger a crisis (travelling by plane should not be a problem because planes are pressurised to maintain a steady oxygen level)
  • avoid very strenuous exercise – people with sickle cell disease should be active, but intense activities that cause you to become seriously out of breath are best avoided
  • avoid alcohol and smoking – alcohol can cause you to become dehydrated and smoking can trigger a serious lung condition called acute chest syndrome
  • relax – stress can trigger a sickle cell crisis, so it may help to learn relaxation techniques, such as breathing exercises
Your healthcare team can give you more advice about avoiding triggers.
It's also a good idea to be prepared for treating painful episodes at home. Keep a ready supply of painkillers (paracetamol or ibuprofen) and consider buying some heated pads to soothe the pain.

Avoiding infections

You'll usually be given antibiotics and advised to have vaccinations to help prevent most serious infections, but there are also things you can do to reduce your risk.
For example, you should make sure you follow good food hygiene measures to prevent food poisoning.
  • wash your hands with soap and water regularly – particularly after going to the toilet and before handling food
  • cook food thoroughly – particularly make sure reheated food, meat and most types of seafood are steaming hot in the middle before eating them
  • store food correctly – make sure chilled food is kept in the fridge and cooked leftovers that you intend to reheat later are not left out for long
Make sure you speak to your GP or healthcare team if you're planning to travel aboard, as this may mean you need extra medication or vaccinations.
For example, if you're travelling to an area where malaria is found, it's important to take antimalarial medication.
You may also need to take extra food and water precautions abroad.

Pregnancy and contraception

Women with sickle cell disease can have a healthy pregnancy, but it's a good idea to speak to your healthcare team for advice first.
It may be useful to find out if your partner is a carrier of sickle cell and discuss the implications of this with a counsellor.
Some sickle cell disease medicines, such as hydroxycarbamide, can harm an unborn baby. You may need to be stop taking them before trying to get pregnant.
There's an increased risk of problems, such as anaemia, sickle cell pain, miscarriage and pre-eclampsia, during pregnancy.
And you may need extra monitoring and treatment during pregnancy to help prevent problems.
If you're not planning a pregnancy, use a reliable form of contraception.

Surgery precautions if you have sickle cell disease

It's important to let your healthcare team know if you need to have an operation under general anaesthetic at any point. Tell your surgeon that you have sickle cell disease.
This is because general anaesthetic can cause problems for people with sickle cell disease, including an increased risk of experiencing a sickle cell crisis.
You may need close monitoring during surgery to make sure you're getting enough fluids and oxygen and are kept warm.
Sometimes you may be need a blood transfusion beforehand to reduce the risk of complications.

When to get medical advice

Make sure you know when to get medical advice and where to go, as sickle cell disease can cause a number of serious problems that can appear suddenly.
Problems to look out for include:
  • a high temperature over 38C (or any increased temperature in a child)
  • severe pain that's not responding to treatment at home
  • severe vomiting or diarrhoea
  • a severe headache, dizziness or a stiff neck
  • breathing difficulties
  • very pale skin or lips
  • sudden swelling in the tummy
  • a painful erection (priapism) lasting more than 2 hours
  • confusion, drowsiness or slurred speech
  • fits (seizures)
  • weakness on 1 or both sides of the body
  • changes in vision or sudden vision loss
Contact your GP or healthcare team straight away if you develop any of these symptoms.
If this is not possible, go to your nearest A&E. If you're not well enough to travel to hospital yourself, dial 999 for an ambulance.
Make sure that the medical staff looking after you know you have sickle cell disease.

Sickle cell anaemia: Pamela's story
Watch Pamela talk about how to cope with sickle cell anaemia and why it is important to raise awareness of the condition.
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