MS bowel problems and what to do about them!

Now I have your attention with this picture of Fake poo – Bowels! Trouble with the bowel can be the bane of your life, so here we’re going to have a look at what can go wrong and what you can do to prevent or rectify things!

For the bowel to work perfectly, there must be intact nerve pathways from the inner and outer anal sphincters, all the way up the spinal cord, and down again. Any interruption to these messages can cause problems.

picture from Aliexpress.com

Let’s start with constipation. As well as changes to the nervous system, reduced ability to exercise, difficulty getting into a good position, reducing fluid intake because of urinary urgency, and medication, can all contribute to this problem.

Of course we always start by looking at diet and fluids, adding plant-based fibre, fruit, vegetables, pulses and seeds. Some old school wisdom that can be very effective include: 1 ripe pear daily, figs, prunes, and adding linseeds to cereal or porridge. Cold pressed flax-seed oil can have a 2 fold role as it’s the highest source of omega 3s, strongly anti-inflammatory, and for some, has a loosening effect.

 

 

 

 

 

However, in MS, sometimes, you can be doing everything just perfectly re diet and fluids, and still have a serious problem with constipation.  If you need to use laxatives, it’s important to understand how they work. The longer the stool stays in the bowel, the more your body draws water out, causing a hard, dry stool.

There are four types of laxative; bulk-forming, osmotic, stimulant, and stool softening. If you have enough dietary fibre, bulk-forming shouldn’t be necessary, and we hope to prevent the hard dry stools that stool-softeners treat.

In my experience, an osmotic, ‘macrogol ‘ product, like Movicol or Laxido, which contains indigestible plastic molecules to stop your body from absorbing water from the stool, is often helpful, but do find the daily dose that works, rather than first getting constipated and then taking it, as this can cause the opposite problem.

Senna or Bisacodyl are stimulant laxatives, increasing the luscular action of the bowel, and can also be used to add ‘oomph’, but if taken on their own, may just give you cramps. Try taking them at night, with the aim to catch the time that the bowel is most active naturally; after the first hot drink in the morning…

Some people find suppositories helpful; these can be glycerin, a simple oily substance that can loosen dry stool, or bisacodyl, to stimulate the bowel.

Constipation that has not responded to these measures may be treated with mini-enemas, (eg Fleet) which can reach a little higher.

 

Did you know that the natural position for humans to poop is in squatting? There’s a brilliant demonstration in this video, https://youtu.be/YbYWhdLO43Q advertising the ‘Squatty Potty’, a peice of bathroom furniture that helps get you more in that sort of position. Of course you can make your own position support system, and there is more than position at play in bowel problems in MS; however, it’s a good start.

For intractable constipation, one of the irrigation systems, discussed below, may help.

 

 

 

Bowel urgency and accidents

Sometimes, the nerve damage in MS can mean that it’s not possible to ‘hold on’, and for some people, constipation alternates with bowel urgency or incontinence. Sometimes, just solving constipation and getting into a routine can be enough to prevent accidents, but sometimes it’s not enough. Nothing can be more upsetting than having a bowel accident, but luckily, there are now very effective products available on prescription, which can help to prevent this happening.

For occasional looseness, Loperamide ( Immodium) can be used, either in tablet or liquid form. However, it’s not advisable for long term, especially if you also get constipation.

For longer term problems, trans-anal irrigation systems provide some people with MS with a life-changing solution. These are basically kits for pumping some body-temperature tap water into your lower bowel, using a soft, disposable rectal catheter or cone, whilst you sit on the toilet.

 

Once you remove the catheter or cone, the water is also released, and any stool that was sitting in the descending colon, is washed out. The action of the water can also stimulate a bowel movement within the next 10-15 minutes.

Once you’ve used the irrigation system, you know that the descending colon is clear, and that it would be very unlikely to need to go for the next 8 hours, unless you have a problem with diarrhoea or loose stools.

Peristeen:  https://www.coloplast.co.uk/peristeen-anal-irrigation-system-en-gb.aspx

Qufora: http://www.macgregorhealthcare.com/index.html

For people who would find hand-pumping impossible, there are motorised systems, including the ‘Navina’ by Wellspect, and the Irypump by B-Braun.

Speak to your continence nurse or MS Nurse to discuss your problems and be referred.

Qufora also has a bed system, that can be used for people who can’t sit on a toilet,

and a mini pump, which is very handy for people who just cannot get started, or can’t seem to finish off properly.

Posterior tibial nerve stimulation (PTNS)

PTNS is a drug-free electrical treatment for both bowel and bladder urgency and incontinence, which involves having several weeks of weekly, tapering down to less frequent, sessions, sitting with a tiny, ( hairs breadth ) needle attached to an electrical current, inserted at the back of your ankle.  From here the current travels to the sacral nerve plexus. It has about an 80% success rate. I recently had the chance to experience this and me and my colleague Emma, got to stick needles in each other, as Alison from Cogentix ‘Urgent-pc’ came to demonstrate. It didn’t hurt… very much at all! – and many people, ( including Emma)  don’t even feel it! It’s not currently available in our area on the NHS at present, although Bedford, Luton and Northmampton hospitals all have business plans to introduce it. It is available in some NHS hospitals, and also in many private clinics, and I have previously had someone referred for it for bowel incontinence, who did very well.

See http://www.cogentixmedical.com/patients/products/urgent-pc

 

 

 

 

 

 

 

 

Bowel accidents due to loose stools, is a different type of problem. Medical problems need to be excluded by seeing your GP, and you may also need to explore whether items in your diet are upsetting your digestion. The sugar Lactose in milk is a common suspect, and some people have a problem with almost all the simple sugars in foods, and have to follow a very strict diet which eliminates ‘FODMAP’s; see:

https://www.nhs.uk/Conditions/Irritable-bowel-syndrome/Pages/Treatment.aspx,

If absolutely nothing else works, and you are still being plagued with problems, then there are surgical options, including elective colostomy.

There are now so many options to help with bowel problems in MS , so ask for help,  and if you’re not getting anywhere, ask to be referred to a specialist bowel clinic.

 

 

 

 

Stem cell and Unicorn poop!

 

Dear all,  1) STEM CELL FOR MS

stem cell

I thought the Panorama piece about stem cell transplantation (AHSCT, ASCT or HSCT) for MS was well done and respectful to people with MS. You can watch it here: http://www.bbc.co.uk/programmes/b06ss17g ,

and there is very good following information on the MS Trust website at https://www.mstrust.org.uk/a-z/stem-cell-therapy#availability

I’m summarising the main points from that here:

As with most treatments for MS, it is only effective for people with either relapsing remitting, or early progressive MS, for whom inflammation is a feature – ie relapses, or active lesions on MRI scan. It’s an aggressive treatment & has significant risks, including risk of death – now reduced to 1-2 per 100 people treated, due to infection.

In the UK, it’s only been offered as treatment on the NHS so far to a very few people, with very aggressive forms of MS, who have continued to relapse on disease modifying therapies, and in general early in the disease course, before the onset of any permanent disability (although rare exceptions in recent disability within last year)

There is one clinical trial currently recruiting in the UK currently; details here:

https://clinicaltrials.gov/ct2/show/NCT00273364,

There are stem cell treatments going on commercially, which some people have travelled abroad for. Costs are between £30,000 and £85,000. Some clinics may accept people for whom the benefits would not be considered by UK clinicians to balance with the risks, and an important set of questions to ask yourself and the clinics, if you were to consider this, is on the MS Trust site.

Stem cell therapy has the potential to bring significant benefits to some people with MS. It cannot be seen as a cure, as in trials, for some people, progression has continued after around 2 years. Good progress is being made through clinical trials & the outcomes of treatment are improving as more is learned. However, as research is still at an early stage, stem cell therapy is not widely practiced and the results of treatment for a particular person cannot be predicted. The risks should be very carefully considered, including the possibility of treatment-related death,  and weighed up against potential benefits.

 

 

2) UNICORN POOP!

 

Click below to watch

And now, from one of my favourite topics, poo, to another – more poo!This very funny video has a great product to sell – the ‘Squatty Potty’, which gets you in the correct natural position to effectively ‘have your bowels open’, eliminating the U bend kink that puts everything under strain when you sit on a western style toilet. But it’s worth watching just for the handsome prince eating unicorn poop icecream.

All the best! – Miranda