MS and urinary tract problems.
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Astra Tech AB, P.O. Box 14, SE-431 21 Mölndal, Sweden. Phone +46 31 776 30 00. Fax +46 31 776 30 10. www.astratech.com
This brochure presents tips and ideas on how you can
minimize your urinary tract problems.
The aim of this brochure is to help you help yourself. You may be in a situation where you have
recently been diagnosed with MS or have lived with the diagnosis for several years. This brochure discusses some of the ways in which you can gain control over any bladder issues you may
be experiencing.
As you may already know, MS affects the urinary system. The symptoms may come and go,
but it is very important that you never ignore them, as this can aggravate them. If you experience problems, you should have them investigated as soon as possible. Otherwise, you may
suffer from problems that don’t need to be problems. Not confronting these problems can at
worst lead to long-term discomfort and hospitalizations.
This is precisely what we are going to concentrate on here. By being aware of these issues,
you have the power to make your daily life easier. It also makes it easier for you to ask the right
questions and maybe even make the right demands of your health care providers. In other
words, we want to give you some valuable knowledge about your bladder. We hope that this will
help you.
Table of contents.
What is MS?.......................................................................................................... 4
How the urinary system works, when it works............................................................. 6
How might the urinary system work when you have MS?............................................. 8
Where can I get help?............................................................................................. 10
How CIC may solve your problems........................................................................... 12
What factors are important when choosing a catheter?............................................... 14
Always seek help when you have symptoms in the urinary system.
Here is some good advice to help you take control over your bladder........................... 16
Information, links and notes...................................................................................... 18
Problems with your urinary system? Use the questionnaire to find the cause.................... 20
Bladder diary ........................................................................................................ 22
3
What is MS?
Nerve cell with the axon wrapped
in myelin. An inflammatory attack
leads to a reduction of the nerve’s
ability to transmit impulses.
MS is a chronic,
inflammatory disease
that affects the central
nervous system.
MS is a chronic disease that many people live with. Not all the negative things you’ve heard
about MS are true. And only a few of the threatening scenarios actually come true.
But it is true that life changes for a person with MS. And there is still no cure for this disease. However, it can be treated and alleviated.
MS stands for Multiple Sclerosis. Roughly, the term means ”many scars”, and that is a
pretty accurate description. These scars are formed when MS afflicts the central nervous system
(the brain and the spinal cord) with inflammations. An attack of MS usually called just that, an
attack. Months, even years, can pass between attacks, but the disease is usually stable during
that time. MS may have different patterns and we are not sure what causes MS.
Normally, MS comes without warning. For example, you can suddenly experience pain in
one eye and blurred vision. After a few weeks, the problem has passed. Normal signs of MS are
numbness, changes in sensitivity, pain, weakness, fatigue, poor balance and stiffness in your
muscles. You can also experience problems with your memory, concentrating and learning new
things.
In many aspects, MS is not a dangerous disease. MS is not contagious and it is not fatal.
Most people who are diagnosed with MS are young adults between 20 and 40 years old.
Sometimes, urinary tract problems are the first symptom. The problems you can experience
are, for example, quick and sudden urgings to urinate (known as urgings), an often recurring
need to go to the toilet, leakage, problems urinating – even when you need to – and urinary
tract infections. Which symptoms you experience depends entirely on which part of the nervous system the disease attacks and can vary between attacks. When you talk to your physician,
don’t forget to describe all of your symptoms, even if they concern the urinary system.
4
How the urinary system works, when it works.
Renal pelvis
Kidney
Ureter
Bladder
muscle
Bladder
Smoth
muscle sphincter
Ureter outlet
Pelvic floor
muscles
Urine transports waste
products from the kidneys
and out of your body.
External sphincter
Urethra
Your kidneys produce urine by filtering and removing waste from the blood. The urine then
flows down to your bladder, which acts as a reservoir. The bladder itself is actually a big muscle
that can expand and contract. When it contracts, the urine is pressed out into the urethra, but
first it has to pass the sphincter muscle. This muscle is located below the bladder and functions
as a safety valve that is either open or closed. When it is open, the urine can flow out and down
into the toilet.
A healthy person usually urinates 5–7 times per day. This is dependent on how much you
eat and drink, of course. A healthy bladder can hold about 500 ml of urine. Normally, you drink
about 1.5 litres of liquid per day.
6
Cerebral Micturition
Centre
Pontine Micturition Centre
Spinal Cord
Sacral Reflex Centre
Hypogastric nerve
Bladder
Pelvic floor
Sphincer
Pelvic nerve
Pudendal nerve
Urethra
The brain and the bladder are connected
As the image shows, your brain and your bladder are connected in an ingenious system. The
brain contains two centres that collaborate. Receptors in the bladder signals to the spinal cord
that the bladder is starting to fill up. The spinal cord then sends signals to the micturation
centres in your brain, that you are beginning to feel a need to urinate. In this case, you can still
choose when you want to empty your bladder. The brain can ignore these signals for a while,
until the signals become so strong that you are forced to empty your bladder. When you (finally)
find a toilet, your brain sends a signal to the bladder’s sacral reflex centre to contract the bladder and relaxe the sphincter muscle. This allows the urine to flow out through the urethra.
7
How might the urinary system work
when you have MS?
The spinal cord and the brain play an important role in urinary system problems when you have
MS. When the nerve is damaged, transmission of signals between the brain and the part of the
spinal cord that controls the urinary system becomes more difficult. This leads to problems with
your urinary system, and this happens to most people with MS. Your bowels are also controlled
by the same neural paths as your urinary system, which means that they can also be affected. If
you become constipated, it can affect your ability to empty your bladder or lead to urgings.
It is important to remember that MS is not necessarily the cause of bladder problems; they
can also be caused by for instance an enlarged prostate or stress incontinence.
Basically, your urinary tract problems in MS can be divided into three groups:
a) urgings, with or without leakage (incontinence)
A condition where an overactive bladder makes you feel the need to urinate very often, but only
small amounts each time. Can cause leakage by involuntary contractions.
b) difficulty emptying your bladder completely (retention), possibly in combination with urgings
Caused by uncoordinated muscle functions. The sphincter muscle does not relax when the bladder
contracts, so urine flow is weak and intermittent. Can lead to leakage, urinary tract infections or (in
the worst cases) kidney problems.
c) problems emptying your bladder that can lead to urine leakage
A more uncommon aspect is disruptions in the lower part of the spinal cord. The bladder and sphincter muscles are weakened, which can lead to a mixture of problems called overflow incontinence.
Urinary tract infections (UTIs)
A common problem is
that you need to go to
the toilet very often, and
you might not reach it
in time.
When you have problems emptying your bladder, you are at greater risk of contracting urinary
tract infections. Bacteria thrive in the urine that is not emptied.
Make sure to pay attention when you suffer the first symptoms of a urinary tract infection.
Contact your physician or specialist as soon as possible in order to avoid the infection becoming
unnecessarily lengthy.
8
These are the most common symptoms of UTI:
• The need to urinate often, in other words frequent urgings.
• A burning feeling when you empty your bladder.
• Diffuse pain in your lower abdomen and back.
• Fever.
• Discoloured and badly smelling urine.
A urinary tract infection with fever can lead to what is known as a pseudoattack. It can mean a
deterioration of your MS condition, but one that is not permanent. For example, your bladder
emptying problems can be aggravated, which in turn can lead to new urinary tract infections.
Your health care service can tailor a form of treatment to your specific problems. As a first
alternative, this can mean a combination of medication and catheterisation. Since MS is a
changing condition, other forms of treatment alternatives can be considered in the long term.
Common treatment options often in combination:
• Medication that for example alleviates an overactive bladder.
• Clean Intermittent self-Catheterisation (CIC). Complete emptying of your bladder using a catheter.
• Use of incontinence protection and/or a uridom.
• Bladder or pelvic floor training. See tips on page 17.
These treatments are usually used in the initial phase. If none of these treatments is satisfactory,
there are several other alternative treatments. For example different kinds of surgery.
9
MS could interfere with
your muscle coordination,
making it necessary for
you to use a catheter.
Where can I get help?
Talk to your MS-doctor
– there are many ways to
improve your quality of life.
Problems with your urinary system is something that you as a person with MS may have to live
with your entire life. The symptoms may come and go, but it is important that you never ignore
them, as this can aggravate them.
A positive point is that we have been able to drastically decrease the number of urinary
system-related diseases, thanks to constantly improving diagnostic methods and follow-up analysis.
In order to establish which treatment best fits your needs, you will need to undergo an examination. A physician or some other kind of specialist can make the proper diagnosis for your
urinary tract problems. Ask your health care provider about which specialists you can speak to
in order to determine your problems and needs.
What happens during the first examination?
At your first examination, your specialist nurse or physician will gather information about how
your urinary tract problems affects you. You will leave a urine sample and undergo an ultrasound to see if your bladder is completely empty after urinating. It is important to determine if
you are able to completely empty your bladder.
Your specialist nurse will also ask you to fill out a ”bladder diary” (see page 22) to see how
often, how much and when you urinate. Your bladder diary is a valuable tool. It helps establish
a clearer picture of your problems.
This first examination becomes a good foundation to determine if you need to be further
examined at a specialist clinic, for example by a urologist or a gynaecologist.
What can I do?
Your most important contribution is to be alert to any changes in your bladder emptying pattern and to inform your nurse/physician about the change. Based on this, your nurse or physician can determine the most appropriate treatment for you.
10
How CIC may solve your problems.
Clean intermittent self-catheterisation (CIC) is a technique for bladder emptying when you
have difficulties doing it the normal way. This is different from a permanent catheter for continuous urine drainage. Treatment with a permanent catheter is something you should avoid, as
it causes complications such as urinary tract infections, which in turn cause urgings, bladder
stones and, in the worst case, infections that can require hospitalization.
This is how it works
CIC may reduce risk of:
* Urgings
* Frequency
* Leakage
* Night time voiding
* Incomplete bladder
emptying
* Urinary Tract Infection
* Damaged kidneys
CIC involves periodically passing a small tube (called a catheter) into the bladder to allow all of
the urine to flow out. This helps to completely empty the bladder when needed. Normally, you
use a catheter about five times per day, which is as often as you otherwise would urinate without a catheter. Once the bladder is emptied the catheter is removed from the body. Although it
can seem quite strange at first, most people find learning to catheterise very easy. Many people
with limited mobility or hand dexterity perform CIC regularly. With some practice it only takes
a few minutes. The only difference from living a normal life is that you use a catheter when you
empty your bladder.
You will avoid accidental leakage
For detailed instructions
on performing CIC, please
ask for our User guide.
Intermittent self-catheterisation is a good strategy for people with MS. Since the bladder often
won’t empty completely with voluntary urination, it is a good way to avoid leaking and urinary
tract infections.
You can avoid “living” on the toilet. Many people with MS don’t dare to leave home due to
sudden urgings and frequency with leakage problems. By combining medical treatment and
CIC, you can alleviate this problem. Medication decreases your bladder activity and CIC ensures that the bladder is emptied completely.
You will decrease the risk of urinary tract infections (UTI)
People with MS can get really sick when they contract a UTI. By completely emptying your
bladder, you reduce that risk.
You can influence the spasticity
Stiffness and muscle spasms can become worse if your bladder is full or if you have a urinary
tract infection.
You will sleep better
Needing to frequently go to the toilet at night has a negative impact on your ability to be active
the next day. Catheterise your bladder before you go to bed; that way, you will sleep better and
prevent nighttime leakage.
Reduce your fatigue
Constantly needing to worry about leakage or frequently having to go to the toilet is tiring. By
reducing the number of times you need to urinate during the day and night, might give the
chance to regain control over your bladder. In that way CIC can help you reduce your fatigue.
12
What about sex?
CIC should have a positive impact on your sex life. You’ll be able to maintain a sexual relationship without worrying about embarrassing leakage or discomfort.
13
What factors are important when choosing a
catheter?
How to try out catheters for clean intermittent catheterisation
When trying out catheters, it is important to get help from a health care professional. Your
catheter must be the right length and diameter. You should also make sure you get a catheter
that is documented to be safe and gentle to use. A common myth is that all catheters approved
for use in health care are equally good. In reality, this approval often means that the catheter
offered only meets minimum standards.
Use a catheter that is gentle to both insert and remove
Do you need to use a
catheter sometimes?
Make sure it’s a LoFric.
Hydrophilic catheters are the most gentle to your body. This is because they have a surface
that attracts water. The result is a very wet and slippery surface, which greatly reduces friction
against your urethra. But all hydrophilic catheters are not equally good. Make sure you use one
that is just as gentle to remove as it is to insert.
Think long-term
To avoid complications, you should make sure that the catheter’s health implications in longterm use are well documented. That is your guarantee for a successful and complete emptying
of the bladder as well as for long term optimal urological health. Therefore, it is not enough
to test different catheters for just a few days to say which ones are the best for you in the long
term.
Over 20 years experience
LoFric is a catheter brand that has been on the market for over 20 years. Today, it is the market’s
most well documented catheter. Studies have shown how well LoFric works in long-term use.
Today, LoFric is the only hydrophilic catheter that can display documented reduced long-term
risk of complications.
14
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Always seek help when you have symptoms in
the urinary system. Here is some good advice to
help you take control over your bladder.
• If you have problems with your urinary system, drinking less so that you urinate less
often is not a good idea. Your kidneys and bladder need to be exercised in order to
work properly. Also, your urine will have a higher concentration of waste products,
which leads to an increased risk of infection.
• A good general rule is to drink about two litres of fluids a day. Some people choose to
drink less in the evening in order to avoid nighttime visits to the toilet.
• Drinking something that increases the acidity of your urine, for example cranberry juice,
can help to prevent infections.
• When emptying your bladder with a catheter, make sure you empty it completely and
often enough.
• Taking trips is no obstacle, not even when you use a catheter. If the travel time is long
and you are unsure about access to a toilet, you can use a catheter with a collection
bag for your urine. If you are uncertain of the water quality use bottled water. By avoiding
foreign bacteria, you reduce the risk of urinary tract infections.
• Bladder training is a method to gradually get your bladder used to increasing quantities
of urine. Talk to your physician, nurse or urotherapist if you want to get started with this.
• Pinch exercises can help women to strengthen their pelvic muscles. These pinch exercises
increase your ability to keep urgings at bay until you reach a toilet.
• Your urine production increases when you drink alcohol and coffee. This means that
you also need to urinate more often. If this is a problem, try drinking something else.
• Limit your use of soap on your genital area since that can be a way to prevent urinary tract
infections. Soap can dry out your skin and make it more susceptible to bacteria attacks.
• Avoid wearing tight clothing that puts pressure on your bladder.
• Constipation is common for people with MS. Eat a fibre-rich diet with fruit, raw
vegetables and whole-grain bread. Try to exercise, and drink plenty of water. Also, consult
your physician – the constipation could be a side-effect of your medication.
17
Information and links.
www.lofric.com
www.msif.org
www.ms-in-europe.org
www.nationalmssociety.org
www.mssociety.org.uk
Testimonials.
“At first I felt that CIC using LoFric sounded horrible. But it was surprisingly easy to learn and the catheter is so soft and slippery when it
has soaked in water that I can barely feel it.”
Benny
“I used to suffer UTI’s several times a year. I simply couldn’t empty my
bladder properly. But since I started using CIC therapy, I rarely suffer
UTI’s and I feel much better in every way. I seldom suffer urine leakage
and I also feel that my MS is more stable than it was before.”
Charlotte
“My urologist informed me that due to MS, I had an overactive bladder. I was prescribed medication to control it, but after a few years it
got worse. The problem was I always had some urine left in my bladder, even after urinating, which led to urinary tract infections. But with
LoFric catheters, I can empty my bladder completely. Both my UTI’s and
urine leakage have decreased considerably. And I feel as good as I did
before.”
Jennie
18
Notes.
19
Problems with your urinary system?
Use the questionnaire to find the cause.
How do I know what to report to my physician or nurse? What is normal? What is not normal? We’ve put together a questionnaire that will help you get started. Sometimes, it can be
difficult to determine if a bladder-emptying pattern is normal or not, which is why an individual evaluation must be made.
Fill this in and bring it to your doctor or nurse. This will make it easier for them to find the
cause of your problems and give you the right help.
Questionnaire
1. How many times during the day do you urinate?
1–6 times
7–10 times
More than 10 times
2. How many times do you wake up at night because you need to urinate?
None
Once
Twice
More
3. How often do you experience urine leakage?
Never
Once per week or less 2–3 times per week
Once a day
Several times per day
4. Do you experience urine leakage during physical activity, for example at work or during
exercise, when you run, cough or sneeze?
No
Yes
5. Do you experience urine leakage when you feel an urge, and don’t make it to the
toilet in time?
No
Yes
6. Do you experience urine leakage when sleeping?
No
Yes
7. Can you, by pinching, stop your urine from leaking?
No
Yes
20
8. Do you use sanitary napkins or pads?
Never Yes, sometimes Yes, most of the time Yes, always
9. Do you ever reach the toilet after feeling an urge, and find you have problems
to start urinating?
Never Yes, sometimes Yes, most of the time Yes, always
10. Do you normally experience interruptions in your urine flow while urinating?
Never Yes, sometimes Yes, most of the time
11. Have you had a urinary tract infection in the past 12 months?
No
Yes, 1–2 times Yes, 3 or more times
21
Bladder diary.
When you visit your doctor or urologist he/she will ask you to fill in a bladder diary. This is a
form that helps to map how your urinary sytem functions over time. You will be asked to fill it in
both day and night during a few days. You might be asked how much you have had to drink so
it would be a good idea to keep track. The results are a great help in establishing a diagnosis.
BLADDER DIARY
Date
22
Time
Spontaneously
voided volume
Time spent
voiding
Catheterised
volume
Urgent=U
Wet=W
Dry=D