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#054: Living Fully with MS. Managing Bladder and Bowel Disorders

This image is a celebration of life and nature, set against a backdrop of vibrant white daisies with cheerful yellow centers, flourishing in a field of green. The message in the overlay reads: "Living Fully with MS. Managing Bladder and Bowel Disorders," accompanied by the website "ms-perspektive.com". The text, nestled amidst the flowers, suggests a sense of hope and resilience, encouraging individuals with Multiple Sclerosis to embrace life despite the challenges of managing bladder and bowel disorders. The overall picture conveys a message of positivity, growth, and the possibility of maintaining a fulfilling life while managing chronic conditions.

This time it’s about bladder and bowel disorders caused by multiple sclerosis. Around two thirds of all people with MS have at least one episode of impaired bladder and bowel function. This is triggered by inflammation that impedes the transmission of stimuli from the brain via the spinal cord to the bladder and bowel.

Unfortunately, it is a classic taboo subject, although it does not only affect MS patients. Women after childbirth, but also many men, have such problems. It’s just that almost nobody talks about it.

Thanks to a wide range of support services, you don’t have to limit yourself.

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Table of Contents

When do bladder and bowel disorders occur in multiple sclerosis?

Bladder problems, like visual disturbances, are among the first symptoms of multiple sclerosis. In a few cases, they are the only initial symptom. In around ten percent of all MS sufferers, bladder problems are a significant part of the symptoms that lead to the diagnosis.

Previously, it was estimated that after a decade of illness, around two thirds suffer from bladder dysfunction and are restricted in their daily lives.

Bowel dysfunction is estimated to affect 40-70 percent of all people with MS during the course of the disease. The figures here are less precise because the subject is associated with great shame.

For both disorders, the sooner the problem is addressed, the sooner it can be treated and kept to a minimum.

What types of bladder and bowel disorders are associated with MS?

Overactive bladder, low urinary urgency or inactive bladder occur with decreasing frequency.

An overactive bladder has difficulty holding urine because the bladder muscle spasms. This results in frequent visits to the toilet and even wetting. This is the most common symptom.

If the urge to urinate is only slight, the bladder is not emptying properly. The urine flow starts slowly and stops prematurely. The bladder, which remains quite full, can lead to pelvic floor spasm.

An inactive bladder is the least common. In this case, the urge to urinate is completely absent as the bladder muscle is flaccid and no longer functions. The toilet is visited far too rarely. The bladder is overflowing and coughing, sneezing, laughing or other pressure causes the bladder to overflow.

Constipation is clearly the most common bowel disorder.

Uncontrolled loss of stool, bowel incontinence, is much less common. In principle, it is also possible to have both problems alternately. However, this is more likely to be the case if the symptoms have not been treated for a long time and have become worse over time. Therefore, please always consult a neurologist as soon as possible. Often the transportation no longer works well, in far fewer cases a spastic sphincter is responsible for the problems.

What can you do yourself if you have bladder and bowel dysfunction?

You can do a lot with your behavior to support the bladder and bowel in their activity. All of the following tips relate only to MS. If you have other illnesses, such as cardiovascular, metabolic or others, please check with your doctor first.

Diet

  • Drink plenty of water or tea, preferably unsweetened and not too strong, so that your body really gets plenty of fluids. Please only drink coffee or other intense caffeinated drinks in moderation. I always brew my green tea very often and only let it steep for a short time. This way I have a pleasant taste but very little tea. I have an espresso in the morning and in the afternoon. This helps me to combat tiredness and is perfectly acceptable.

  • Reduce your alcohol intake as much as possible. Alcohol tends to numb the senses and also the body and is better consumed only rarely and in small quantities with MS.

  • Eat a balanced diet that is as high in fiber as possible. This means lots of vegetables, wholegrain products, pulses and fruit. Fermented foods are also good for healthy intestinal flora and an active gut. These include yogurt, buttermilk, vinegar for fresh salads and sauerkraut. Meat and sausage should only be eaten in small quantities. And prefer a low-salt diet and fat only in moderation. In general, variety on the plate is good. Then you get all the nutrients your body needs.

  • If you have problems with residual urine, cranberry juice is good for inhibiting bacterial growth in your bladder.

You can also listen to the existing episode on this topic:

#037: Nourand – Unlocking the Nutritional Code for MS with Dr. Mireia Sospedra

Behavior

  • Do not suppress your urge to urinate by crossing your legs. This may be necessary in rare cases, but in the long term it can exacerbate existing spasticity. It is better to go to the toilet preventively or at regular intervals. Try to find the right balance by not training your bladder to fill up less and less, but also by not cramping it.

  • Daily pelvic floor exercises will help your muscles to regain their strength and counteract the symptoms. There are plenty of them. Yoga has a lot to offer, special pelvic floor courses, aqua gymnastics, simple tensing and relaxing. For women there are targeted pelvic floor exercises, especially after giving birth, but also for men. Climbing stairs trains the pelvic floor and a particularly charming way is sex. Not as a means to an end, but as a nice effect on the side. Jogging, on the other hand, or other exercises that involve a lot of jumping up and down, such as trampolining, are counterproductive for a weakened pelvic floor.

  • Exercise regularly and try to incorporate a good mix of stretching, strength and endurance into your sports program. This will help you with bowel problems in particular, but is also very good for your general physical well-being and any other symptoms.

  • If you are not sure whether you have too much residual urine in your bladder, you can also keep a diary of how much you drink and how much urine you pass. Of course, this means that you have to measure how much you have urinated using a measuring cup. Or you can contact specialists who can also provide information using ultrasound or other methods.

  • For more severe problems with constipation, a colon massage can be very pleasant. If you only need it infrequently, a physiotherapist can perform it. If you have a regular problem, you should have it explained to you so that you can do something good for yourself.

Psyche

  • Perhaps you need to go to the toilet more often when you are emotionally tense. Then it can be helpful to use talk therapy, whether as one-to-one psychotherapy or in larger discussion groups, you need to find out for yourself.

Medication check

  • It may be that antispastic drugs or other medications intensify your bowel disorders. It is best to ask your neurologist about this and weigh up together how the benefits relate to the side effects before making any adjustments. After all, with MS you may well be struggling with several symptoms.

In general, although you cannot repair the damaged nerves with the measures mentioned, you can help your body to optimize all other factors that influence the bladder and bowel. This will certainly reduce the problem.

What aids and medication are available for bladder and bowel disorders?

Medication

There are medications that alleviate the spastic contraction of the bladder, while others have a relaxing effect on the sphincter muscle.

If you can no longer sleep through the night, it is possible to temporarily reduce urine production or specifically weaken the muscle responsible for the urge to urinate, the expulsion muscle.

If your bladder problems lead to an acute urinary tract infection, antibiotics can help.

Water-retaining laxatives are used for the bowel. By means of osmosis, they draw water back into the large intestine so that your bowel movements do not become hard, but remain soft and can therefore be excreted more easily. In addition, a larger amount of stool, due to the more water, stimulates intestinal activity better.

There are also medications that stimulate transportation.
If the external sphincter muscle is severely affected by spasticity and causes pain, an injection can provide relief.

And if the opposite problem occurs, i.e. involuntary defecation, you can use medicinal charcoal tablets. They bind the bowel contents.

Aids

Assistive devices and stoppers

There is a large portfolio of aids that help you to participate in normal life as relaxed as possible without having to take your MS symptoms into consideration.

These include incontinence aids that collect urine and stool. For women there are special pads and tampons and for men there is a type of condom.

For bowel problems, there is a type of tampon for both sexes. You can even continue swimming with it.

And swimming or aqua sports are among the sports that are particularly good for MS. So it’s all the better that aids can help you to continue doing water sports.

Controlled emptying of the bladder and bowel

If you have problems emptying your bladder, you can learn to catheterize yourself. However, you will need good fine motor skills to avoid accidentally injuring yourself.

One step further is permanent urinary diversion or a bladder pacemaker.

For bowel evacuation, there are clysters and other aids that flush the bowel in a controlled manner so that it can then be emptied. Please do not attempt this yourself, but ask a specialist to explain the technique and equipment to you. The water must not flow too far back into the bowel, as this would be dangerous.

What can you do in acute phases?

Talk to your neurologist. They can certainly help you. And the better your neurologist knows about all the symptoms, the more specifically he can help you and weigh up your treatment if you have more than one MS symptom.

And if bladder and bowel disorders remain permanent?

Then there are many experts who can help you.

Nutritionists, physiotherapists, medical specialists for incontinence. You are not alone. Many people have this problem.

But you will only find relief if you dare to talk about it. The more openly you describe the situation and where you are restricted by the bladder or bowel disorder, the better all these situations can be eliminated. For a fulfilling and enjoyable life with MS.

You should also apply for the Euro toilet key if you regularly travel within Europe, no matter how large your radius is. It gives you access to over 12,000 public disabled toilets. In the UK it’s called the RADAR key and be sure to check with your local patient organization to see if there is a special key for disabled toilets in your area if you don’t live in Europe. This can be a huge relief in everyday life and when traveling. After all, there are often long queues for the toilet at train stations or in city centers. Often, all you need to apply is confirmation from a neurologist that you have incontinence.

On the following pages you will find detailed information on the symptomatic treatment of bladder and bowel dysfunction:

What is the best prevention against bladder and bowel disorders?

That you lead a healthy life with sufficient exercise, train your pelvic floor, eat a balanced diet, drink enough and consume only a few stimulants. And, of course, a functioning immunotherapy that protects you from further lesions and relapses and stops multiple sclerosis as completely as possible or at least slows it down considerably.

Food for thought

Talk to your neurologist about your bladder or bowel disorder, regardless of whether it occurs acutely or whether you have had it for a long time and have been afraid to talk about it.

Help is available in many different ways. But you must address the problem and ask for support. Your doctor can advise you and you can work out a strategy together on how to deal with the problem. As much as necessary and as little as possible is certainly a good way. After all, if you can initially counteract the problem with your own measures, you will have further options if the symptom worsens.

But please don’t wait too long, as this could exacerbate the bladder and/or bowel dysfunction. In addition, resulting infections can worsen other MS symptoms or even trigger inflammatory activity. And if it’s acute, bold intervention may also be the best choice.

Question to you

Do you suffer from bladder or bowel problems?

See you soon and try to make the best out of your life,
Nele

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Nele Handwerker

Blogger & Patient Advocate

I show you how to make the best of your life with MS from family to career to hobbies. Thanks to science and research, a lot is possible nowadays.

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