How to support partner with bowel and urinary incontinence due to spinal problems

[SunburstsOrMarbleHalls]

DP has had serious spinal issues over the past 10 years.

It started with 2 slipped discs and he has had surgery due to severe pain and nerve damage.

Ordinarily he has chronic sciatic pain, partial leg numbness and constant pins and needles down one leg and a foot drop that make home prone to tripping He is waiting for a spinal cord stimulator to be fitted but due to Covid this has understandably been delayed.

2 weeks ago he developed complete saddle anaesthesia and developed bowel and urinary incontinence so was taken to a specialist hospital immediately due to the concern it may be Cauda Equina.

After tests and scans this has been ruled this out by the surgical team but doctors still do not know what the issue is. The surgical team have now said it is a neurological issue that can not be treated by them. He is waiting for a nerve stimulation test today with the neurology team to see if this flags up why and what is happening but has been warned that this test often provides inconclusive results.

A surgical doctor today has said that if the test is inconclusive there is nothing they can do he will be discharged tomorrow and see the neurology team as an out patient. Currently even though he is able to self catheterise every few hours he is not able to retain urine so is still peeing himself a few times per day. He has also described the numbness as progressing so is no longer able to feel anything when catheterising either. There is also the bowel incontinence issue that has not improved at all, he has no warning or feeling when this happens.

He is devastated that he will be sent home with nappies and catheters but potentially no understanding of why this has happened. He is also frightened that this numbness is worsening and could be permanent (the doctors think it might get better on its own but can't guarantee it) He is worried he will lose his job and never be able to leave the house in case he soils himself or see friends and family etc I have not been able to visit him due to the current restrictions so even though I have been at the other end of the phone I haven't been able to support him in person.

I was wondering if professional support is available even if it just to deal with the emotional impact of what is happening to him?

Does anyone have any ideas of what I can do to help make this situation easier when he comes home? He is panicking at the moment and feels embarrassed about what is happening to him and I want to make things as stress free as possible for him.

Can the hospital contact the relevent services to arrange some care for when he comes home?

I've called the hospital and spoke to a nurse who said that as it could be short term (or not) there is nothing she could advise at this time. The hospital is under a different CCG to where we live so that may complicate the issue. When I called the GP they had could not give any suggestions as they cant discuss his care with me and had not received any information due to him still being an in patient.

What a difficult situation you and your husband. It’s very disappointing that no-one had been able to give you some advice and reassurance that this is not an uncommon sequale of spinal injury and there are ways of management. I would suggest you ask for your husband to be referred to the local Continence Team and the District Nursing Service.

I went through a period of this after a bowel operation and it badly knocks confidence.
I wore incontinence pants and although I’d have rather not needed them, they at least did their job.
Try and go regularly in the morning - I found a gelatine suppository helped get things moving - I’d take a couple of spoonfuls of codeine linctus for long journeys or occasions when I was really anxious to avoid an accident.
Your partner has all my sympathy - it’s a horrid condition to have and I hope his doctors can help him.