Faecal incontinence
Being incontinent in public can be very embarrassing. It doesn't have to happen; there are a lot of things you can do to prevent it from happening.
This newsletter discusses why people with MS develop problems with their bowel function and gives simple advice on how to manage constipation and other MS-related bowel problems.
Have you ever being incontinent in public? This is one of the most embarrassing things that can happen to someone with MS. I have many patients with MS who describe their experience of being incontinent of faeces and/or urine in public as being the worst thing that has happened to them.
I manage several patients who have become socially isolated as a result of this experience; they simply stay at home so as not to experience the embarrassment again. One patient of mine developed a severe anxiety disorder as a result of an episode of faecal incontinence in public. Her anxiety was so bad that she had to see a psychiatrist. She was eventually diagnosed as having post-traumatic stress disorder. She had intrusive thoughts and kept having unpleasant flashbacks about the episode. In other words, she was reliving the episode over and over again. It took her several years of counselling to overcome the social phobia associated with her anxiety and she eventually was able to start going out again. She now only goes out after having an enema to clear her lower colon and rectum, and she never eats when she is out so as not to stimulate her gastro-colic reflex. The latter is the reflex urge to defaecate that comes after eating a meal. She also wears pads and carries a change of clothing around with her. She once showed me her faecal incontinence emergency pack; it contained wet wipes, clean underwear, spare continence pads and poo bags to dispose of any used items discreetly. Her emergency pack reminded me of what I used to carry around with me when I went out with my daughters before they were potty trained. With regard to her bowel function, this particular patient has become a baby or child again.
In general pwMS with constipation have a loss of sphincter tone (strength) at rest and during contraction compared to non-MS patients. In the subgroup of patients with faecal incontinence, the rectal sensitivity threshold is lower in patients with MS than in other patients. In other words when faeces enter the rectum the threshold that triggers the defaecation reflex is lower. Finally, patients with MS had a decrease in the difference in the so-called resting anal pressure before and after maximum squeeze manoeuvres, which suggests post-contraction sphincter spasticity. All this indicates the coordination of the pelvic floor is abnormal in pwMS.
Knowing what is wrong with rectal and anal function in patients with bowel problems can help with specific therapies targeting specific symptoms, i.e. constipation, faecal hesitancy (difficult initiating a bowel action), incomplete emptying, faecal urgency, urgency incontinence, overflow diarrhoea, excessive bloating, excessive flatus, etc.
Faecal incontinence a problem is not necessarily linked to disability. Why? The reason is that a strategically place MS lesion in the spinal cord can impact bowel function without causing other disabilities. I have patients who have had spinal cord relapses that leave them with faecal urgency and episodes of faecal incontinence, but very little other disability.
Bowel dysfunction is common in MS. In general, the management aim in pwMS is for them to have a regular bowel action, either daily or at least every two days. The main problem in MS is bowel hypomotility (slow or sluggish movements); MS-related constipation, therefore, needs to be treated with so-called prokinetic agents, i.e. drugs that increase the muscular action of the bowel.
The most common prokinetic agent I prescribe is senna. If the latter fails we try bisacodyl, co-danthrusate, sodium picosulfate or prucalopride, which are agents that work via stimulating the nervous system in the bowels. Prokinetic agents often need to be taken with bulking (fibre) and loosening (liquid) agents. Bulking agents include methylcellulose, psyllium or ispaghula husks, or sterculia. Loosening agents keep liquid in the bowel, for example, lactulose, polyethyelene glycol (Movicol), magnesium hydroxide, magnesium sulphate (Epsom salts). These agents work by causing water to be retained in the stool.
It is important to realise that dehydrating yourself to control your bladder problems can make constipation worse; therefore you need to drink adequate quantities of water throughout the day. Similarly, drugs to help your bladder dysfunction, pain and spasticity may make constipation worse. Therefore if you are constipated your medications need to be reviewed.
Some pwMS become so constipated that they become faecally impacted and go onto develop intermittent overflow diarrhoea; i.e. the bacteria in the bowel liquefies the stool above the impaction and the liquid overflows past the impaction. A typical history is periods of constipation, punctuated by episodes of diarrhoea. Faecal impaction is a serious problem and often warrants admission to a hospital to treat. This is one of the complications of bowel dysfunction that you need to prevent.
Faecal urgency, and urgency incontinence, is a problem that needs attention; if you have to go you have to go. This is best treated by developing a bowel routine and trying to evacuate your bowels at a regular time of day, typically in the morning. This can be aided by using something to stimulate the bowels. I typically use start by prescribing glycerine suppositories or mini-enemas. If the latter fails I may elect to use transanal irrigation. Trans-anal irrigation sounds terrible, but in pwMS who need it often makes a massive difference to the quality of their lives and gives them some control back to tackle a problem that often leaves them stranded at home. The commercial rectal irrigation system we use most is the Peristeen system. I have lowered my threshold for referring patients for assessment to use this system; mainly because of the psychological benefits patients derive from it.
The biggest problem with poor rectal compliance* and faecal urgency is the odd occasion when you have diarrhoea. With diarrhoea, whatever the cause, your rectum fills multiple times during the day and hence you are more likely to be incontinent. In this situation, some gastroenterologists recommend using a rectal plug, in combination with incontinence pads.
PwMS who have urinary and faecal incompetence may benefit from pelvic floor exercises, which can improve the functioning of the rectum and the anal and urinary sphincters. Please don’t ignore simple interventions such as exercise, which also can improve bowel function.
For those of you with Bowel problems, you can download or complete online the Wexner Incontinence Score to assess whether or not you have a problem and how bad the problem is. Bowel function is one of the hidden symptoms of MS. Over the lifetime of the disease, the majority of pwMS develop bowel problems so it is important for you to realise that a lot can be done to help you. If you have bowel problems please discuss these with your neurologist or MS clinical nurse specialist.
Bowel dysfunction is one of the many symptomatic problems that may be avoided by preventing or delaying the development of disability. Preventing bowel dysfunction is another reason to actively manage your MS with DMTs. Preventing disability, i.e bowel dysfunction, is better than treating it.
If any of you have additional advice from your own experiences please don’t hesitate to share them. The purpose of MS-Selfie is to not only help yourself but to help others, to optimise the management of their MS.
General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust. The advice is intended as general advice and should not be interpreted as being personal clinical advice. If you have problems please tell your own healthcare professional who will be able to help you.
I think I have the onset of this. Luckily it's only happened at home and I got to the loo in time. I dread it happening when I'm out. Lots of tips on here so shall be fore armed!! A bigger bag is required.
Bowel and bladder issues are horrible. I had an accident in public in summer while wearing a summer dress in the middle of a posh shop with a highly polished floor. My poo dropped on the floor. I wanted to die. I swiftly picked it up, put in bag and disappeared fast. I cried all day until my daughter came & sat with me & said 'you'll laugh about this one day'.
She was right.
But I do travel with wet wipes & clean underwear etc.
As the saying goes, 'life is shit'.