Ask the experts: Neurogenic bowel issues in advanced MS

Bowel problems, including constipation, loose bowel movements and bowel accidents, are a common problem in MS, especially for those people living with advanced MS. 

The MS Trust Advanced MS Champion Programme is steadily building the numbers of specialists in advanced MS in the NHS. The current team of Advanced MS Champions meet regularly to support each other and discuss their work around the country. We took the opportunity to collect some bowel-related questions for them from our Facebook group for people affected by advanced MS. This group includes people with advanced MS and their partners, family members and carers. 

The Advanced MS Champions group discussed the questions and shared their advice in this article. This is general information for people affected by advanced MS. Always seek help from your GP or MS team if you're struggling to manage bowel-related issues.

My GP says the cause is lactose intolerance, but I believe it's linked to MS somehow. My stools are very loose and frequent. It's been happening for the last six months or so.

A bowel assessment is required to determine what the cause of this may be. A review of medication and lifestyle would be part of this assessment. You may be asked to provide a stool sample. Once the cause of the overactive bowel has been established, an appropriate management plan can be provided. This could include a diet or medication change.

Depending on your geographic area, the health professional who caries this out may be a nurse form the community continence team or your GP.

We have found the nurses will supply certain pads (the small nappy types) but not the ones we use (the large bed pads 60x90cm) and not baby wipes. We have to buy these in ourselves and we get through an awful lot so it gets expensive.

Unfortunately, this seems to be a reasonably common occurrence. You can request pads from the GP/community services but this doesn't tend to cover the needs of the patient sufficiently.

It generally affects my bowel and causes pain. I'm doing what I can to keep it steady but I'm struggling almost daily now. Is there anything I might not have thought of yet?

Autonomic dysreflexia is a condition where there is a sudden (and potentially lethal) rise in blood pressure. This is a relatively uncommon symptom in MS, it most commonly affects people with spinal cord injuries. However, we would suggest keeping a diary of the triggers for your autonomic dysreflexia. For example, a blocking catheter can cause this. You will be able to listen to your body. Make a note of the time of day, any possible triggers and your symptoms. This will help you to identify any patterns. A plan can then be put in place to reduce any triggers. 

It's also important that others know the signs and symptoms of your autonomic dysreflexia so they're in a position to spot it and help, if necessary.

Advanced MS: Read more about advanced MS

The Advanced MS Champions Programme: Read more on the AMSC role and programme

Bowel problems: Read more about treating bowel problems in MS

Bowel incontinence: Read more about managing bowels to reduce accidents

Constipation: Read more about lifestyle and dietary changes to ease constipation

Tips for keeping your bowel healthy: advice from an MS nurse, dietitian and physiotherapist