“This is a different life and we need help to live it”
Having been left with significant bowel problems as a result of Cauda Equina Syndrome (CES), Sadie was left struggling for months with no support post-discharge from hospital.
After two rounds of surgery following diagnosis in May 2019, Sadie went home with no support or appointments in place, having to cope with her ongoing bowel problems and being confined to a wheelchair with only her family to turn to.
She is now calling for greater awareness of CES and its life-changing impact, and for more to be done to support patients.
“When I left the hospital I didn’t get physio until about 13 or 14 months later,” she told the CES Festival and Conference.
“I did take a lot of healing as I had internal stitches, and that may have been the reason, but I still feel that was a long time. I wanted to push forward and do what I could, but I felt they were always pushing me back.
“It was only three months ago that the incontinence team got involved, I think that’s a very long time, I had 12 months of community nursing. There was no support, the community nurse wasn’t the right way forward I feel. I had no independence and it got me to a very dark place.
“There was no home assessment on leaving hospital, they did ask if I wanted a handrail for the bed which I had, but apart from that, I was sent home and left to get on with it.
“You realise how much you’ve taken for granted – all of a sudden you don’t know how to go to the toilet anymore, that sounds really stupid and other people don’t get it, but you don’t get the feeling to wee, you don’t know what that feeling is anymore.
“I didn’t feel I had any control of anything. My bowel had the biggest impact on me physically but it affected me mentally as well.”
Despite the devastating impact it can have on a person’s life, CES remains little known and understood by many, even within the medical profession.
The syndrome is a rare and severe type of spinal stenosis where the nerves in the lower back suddenly become severely compressed, and failure to diagnose and receive appropriate treatment can lead to greater risk of long-term consequences including incontinence or paralysis, as well as problems with sexual function.
Sadie believes the trauma of CES and its impact is made worse by the lack of provision put in place for patients once they are discharged from hospital.
“Before I’d even discharged from hospital, I was struggling to deal with a lot of things mentally, physically, and with my bowel function. You need some kind of information to leave the hospital with, contact numbers and certainly some kind of mental health support,” she says.
“CES is major, life changing, and these things really need to be before you’re even discharged.
“You’re fighting for appointments as soon as you leave hospital, no-one is interested, but if you could make them before you leave hospital with anybody who is needed, I think that would be totally different.
“Throughout the whole of this you have to try and remain positive but that’s really hard when you’re battling to get appointments and trying to move forward and get some independence. It’s a different life and we need help to live it.”
Sadie is grateful for the support of her partner – “from day one, no matter what is thrown at her, she takes it and carries on reassuring me” – and from the CES community, which is represented by the Cauda Equina Champions Charity.
The charity has created the first-ever CES Festival and Conference to help increase awareness of the condition, bringing together healthcare professionals and patients to share stories and help inform best practice. The week-long event will culminate in International CES Awareness Day on Friday.
“It can be endless, but we need to stay positive although that’s very hard to do. We need to rely on each other,” says Sadie.
“While things are changed in how CES patients and treated and looked upon, we need to lean on each other.”
To attend the remainder of the CES Festival and Conference, register here
