Story by Ian Douglas

My name is Ian, and in mid-2019 I sustained a C4 incomplete spinal injury from a motor car and caravan accident.  Learning to adapt to life as a quad, accepting the many limitations my injuries had left me with, and working on my recovery was an incredibly slow process. 

By the time I was discharged in early 2020, I required a carer to assist me with many tasks, but none were more difficult and time consuming than my average three-to-four-hour bowel routine. This was something I dreaded, and the pain of ongoing severe haemorrhoids did nothing to enhance the experience.

Time and therapy continued to see physical improvements beyond expectation. I regained the ability to walk some distances with an aid, to drive an adapted vehicle, and to shower and dress myself. But, regular carer support for my bowel regime continued. It was seriously impacting my life and impeding my independence – having to set alarms, plan my days around long sessions in the bathroom, together with the loss of dignity and significant pain – all of which had a negative impact on my mental health. 

I required a large commode for showering, which severely limited my ability to travel, something that was and still is high on my agenda.

I began to research what options might be available, and sought advice from staff at the Austin & the Talbot. At this stage I was using suppositories, and a suggestion was made to try enemas again, but these were no quicker previously. 

I spoke to a surgeon and several people who had had haemorrhoids removed, but I learned that the procedure was painful, recovery in hospital could take weeks and they very often returned. Peristeen washouts were another option but my persistent issues with haemorrhoids prevented that. I then looked into colostomy as a more permanent solution to not only the long hours and painful episodes, but to give me enough independence to no longer require carers. My GP (with no previous spinal experience) was quite shocked that I would consider this, saying I was far too young!

I spoke to my colorectal surgeon, who gave me all the possible negative scenarios to weigh up against the benefits, and suggested speaking to a highly trained stoma nurse at our local private hospital. With over 15 years experience and an extremely positive outlook, she took the time to chat to both my wife and I at length, gave us various links to use and further patient stories to follow up. She could see no reason for not doing this sooner and suggested the main reason stoma’s are not more common is simply that people have preconceived, negative and very outdated ideas about them. There’s still a lot of stigma attached to colostomies, much of it from ignorance.

With my family in full support, I underwent the surgery in late January this year and can honestly say I haven’t looked back for a moment! I spent a week in hospital, had little pain and recovered quickly. I was given plenty of support which is ongoing as needed, and the ordering process for all my stoma needs is free, simple and efficient. After a short period of adjustment to caring for the stoma site and bag emptying, I have settled very quickly into a twice-a-day emptying routine, usually first thing in the morning and last thing at night, and the whole process takes as little as 5 to 10 minutes. 

It has become an easy part of life for me, and by far the best outcome has been regaining my independence. I no longer need assistance from carers, have increased my freedom and time flexibility, can travel and plan future holidays and no longer require a commode. 

There is always a concern about leakage occurring which has only happened once when I forgot to check before leaving home. If I am going out at night I always ensure now that my bag is empty before we leave. The bag fills up at its own speed but you get to know your own routine fairly quickly.

Everyone I’ve spoken to or read articles about has been pleased with their decision to get a stoma. The choice is not easy and it certainly won’t be for everyone. Talk it through with those in the know and take your time to be sure. Mine is completely reversible if I were to change my mind, but that is far from likely.

In conclusion, a stoma can be life-changing surgery for some spinal patients, and, for those who are able to manage the dexterity required to change the bags, it can provide an amazing sense of independence and freedom…at least it has for me.

If you have any questions, feel free to get in touch with me and I’ll do my best to answer them. Email: [email protected]