Information about bladder problems and bowel complications

Symptoms and Treatments
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New paper published on lower urinary tract and bowel dysfunction in spinocerebellar ataxias

A new paper from the team at the London Ataxia Centre provides new information on symptoms of the lower urinary tract (LUT) and the bowel in people with spinocerebellar ataxias (SCAs). The lower urinary tract consists of the bladder and the urethra (the tube carrying urine from the bladder to outside the body).

The objective of this research was to evaluate the prevalence of LUT and bowel symptoms in SCAs and assess the impact on quality of life. Also, the aim was to investigate the association between LUT symptoms, neurological features, and genetic mutations.

Individuals affected by SCAs, were approached about LUT and bowel complaints, and completed validated questionnaires. The study involved 51 individuals with a range of different SCAs: 4 SCA1 patients, 11 SCA2 patients, 13 SCA3 patients, 17 SCA6 patients, and 6 SCA7 patients. In addition, urodynamic studies were carried out on SCA3 and SCA7 patients with urological complaints.

The researchers found that 60.8% self‐reported LUT symptoms, whereas 86.3% LUT symptoms were reported via a validated questionnaire. Also, 34 people experienced urinary frequency and urgency (68%).

Furthermore, another key finding was that although LUT symptoms were most often classed as mild (61.4%, 27 participants), they impacted the quality of life of 38 participants (77.6%). Of these, 21 individuals were not taking medicines for urinary dysfunction.

In addition, bowel symptoms were uncommon, and the impact on quality of life was little.

In conclusion, in individuals affected by SCAs, LUT symptoms are prevalent and impact quality of life. Bowel symptoms tend to be mild. Due to the complexity of the neurological involvement in SCA, these issues may be overlooked. Thus, a multidisciplinary management approach is recommended, as symptoms are amendable to treatment.

Please find the full research paper available here.

For more information on the different types of SCAs, please visit our website.

For information about bladder problems and bowel complications in ataxia, please read section ‘4.1. Symptomatic treatments’ in the Ataxia UK medical guidelines.

Date posted: 15/04/2021

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Interesting as ever - but its not just SCA’s that have this problem …

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:slightly_smiling_face: This is true. A friend in my local ataxia group is beset with bladder problems, and it is linked to her ataxia diagnosis. She’s reached the point where an implant was offered to help control the situation, but it would have to be sited near her spine…

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this is interesting but personally, I dont want anymore tests or treatment. I use an exercise ring, to strenthen bladder control. Constipation is always difficult and sometimes exercise, drinking more fluids, eating bulky foods, just dont help. this is when I resort to senakot.
I know some people, especially young ones, need more help to lead a full life and I am sure botox or whatever is something they need to consider. Good luck everyone x

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You may want to read this: Constipation - Ataxia or not?

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Lots of people have told me to drink plenty. Well I do - but the more I drink, the more the carpet needs a good clean! This incontinence sometimes only warns me a few seconds before it spills. I saw someone about this once and she asked me when it happened and I said “When I put my …” and before I could finish she said “… put your your key in the keyhole.” I looked at her in amazement because that was exactly what I was about to say. She smiled and said “It’s same for all my patients.” So yes, it’s ataxia (for us) but this particular symptom is common. My backside is not as bad at the moment. Just once every few months

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Patsy. An exercise ring? What’s that? Where could I get one?

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:slightly_smiling_face:This is one type of ring to help with pelvic floor exercises.

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I googled it and this is just an example

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I thought you meant something to wear - so how do you use it? Between knees? Higher?

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:slightly_smiling_face: How to use the ring…You can see from my picture above

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Thanks. I didn’t see this at first.

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I order Sainsburys incontience pads with my online grocery order. They turn liquid to gel and save a lot of clearing up.

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:slightly_smiling_face: That’s handy to know Patsy…As it happens I could have done with that help just recently :no_mouth:

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Yes they have given me so much confidence … doesn’t stop the threshhold urgency though .
The most useful advice given to me passed on from MS nurse was go before you need to. X

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My wife’s aunt had a similar story though it wasn’t ataxia. She said that if she went to the loo, she could guarantee that 10 minutes later she would need to go again. Her GP said the best thing was to remain in the vicinity.
Trouble is that I have the problem, but only sometimes.

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You might find something cheaper on Home Bargains Online.

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I tried Co-op own brand but they chafed so I’ll stick with Sainsburys own brand but thanks for suggestion.

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