Stoma and SCI – considerations from lived experience
For the second webinar in our Stoma and SCI series we were delighted to welcome Ant and Harry, members of the SCI (spinal cord injury) community, to speak about their thoughts, feelings and experiences of either having a stoma fitted, or considering the surgery.
The webinar was hosted by Rhiannon Daniel and Victoria Oliver, partners in Bolt Burdon Kemp’s Spinal Injury Team and can be watched in full below.
Victoria kicked off the webinar by explaining that many of BBK’s clients with a SCI are interested in a stoma, but don’t always have the opportunity to speak to someone with a stoma and to discuss those lived experiences. For this discussion, Ant, who has a C4 complete spinal injury, sustained in 2000 had a stoma fitted 10 years ago and feels it has transformed his health. Harry was injured 10 years ago whilst playing rugby and has a C5/C6 complete spinal injury. He is currently managing his bowels with Peristeen, a transanal irrigation system which is done every three days. This is time-intensive and can be restrictive. However, Harry is on the fence as to whether he should have a stoma fitted – he recognises the surgery would result in greater freedom to travel, work and try new foods however he’s unsure about having such a permanent addition to his body, especially as he’s only 29. Harry is also very active and is concerned a stoma wouldn’t work with the tight belts he has to wear to play rugby.
Ant’s stoma story
Sharing his experience, Ant explained when he was first injured in 2000, stoma was a taboo and barely mentioned. He decided to have the surgery 10 years ago after his health really started to suffer and he underwent multiple operations to deal with haemorrhoids. At the time, Ant had a young family, with another baby on the way and it wasn’t practical or preferential to have so much time taken up by bowel management.
He was referred to the specialist stoma team and spoke to a few people who’d had the operation – no one he spoke to had any regrets about the surgery and six months after beginning to consider a stoma, Ant had the operation. Ant was in hospital for 10 days after the operation and suffered spasms in the period after the surgery, but after a six-week recovery period felt much better.
Since then, Ant described how liberated and healthy he feels – he’s no longer nervous to eat certain foods and it only takes two minute to change the bag, which can’t be seen.
Q&A
What’s you daily routine with a stoma?
Ant: I don’t really think about it. I’ll notice if it’s full and will change it, which is around every two days, but this is easy to do and can be done in a disabled toilet if you’re out and about. But I’ve had mine changed in the car, in a carpark – it’s easy to be discreet. I also employ my own carers, and it makes it much easier. Pre-stoma it was difficult to hire people who had the right bowel management experience, which isn’t an issue now.
Harry has limited hand function and asked: Would it be possible for me to change my stoma myself? And do you shower with the bag on?
Ant: Yes, I think you could change it yourself – we use an aerosol to help clean the area, but this could possibly be done with wipes if that’s easier for you. And the bags are waterproof, but I tend to take it off at the end of my shower, just to clean the area. You can move it around too, so it shouldn’t interfere with the band you wear when you play rugby.
Harry also asked: How is your gut health since having a stoma?
Ant: Much improved. I realise now how bloated I was pre-stoma, and my doctor commented recently on how healthy my bowel looked. It’s important to eat a healthy diet to avoid constipation but I don’t restrict my diet anymore – I can eat spicy food!
How is travelling since your stoma surgery?
Ant: Pre-stoma I would carefully plan the day we flied, so we were travelling after I’d done my bowel management plus, I’d have to manage my nerves, as that can impact your stomach. But now I just don’t factor it into our holiday plans. For instance, we went to Tenerife recently and I went diving with my stoma.
Is sex a consideration when weighing up whether to have a stoma?
Harry: Definitely – especially as I don’t have a super public catheter, for example.
Ant: Post stoma, our sex life improved because I’d been so ill prior. It saved our relationship.
In concluding remarks, Ant expressed his wish that stomas are spoken about from day one post-injury and there was less of a taboo around it, as he experienced when he was first injured. For him, it’s helped to transform his health and increased his freedom. But after the discussion, Harry remains on the fence – particularly as he hasn’t had the health issues Ant described pre-stoma.
From our perspective, working with SCI clients, it’s incredibly important all the information about stomas is available, and access like this, to those with a stoma who can talk about their lived experience, is vital so everyone can make their own informed decisions.
Huge thanks to both Harry and Ant for their insights and honesty on this important issue.
Please note this does not consist medical advice – if you have concerns, please contact your GP.
