Volunteers are the beating heart of Colostomy UK. Almost all of them have had stoma surgery. We think this is important, because it puts our volunteers in a unique position to empathise with and support other ostomates. So, if ever you contact us for some help or advice, be it through our 24-hour Stoma Helpline or perhaps by visiting our stand at a hospital open day, there’s a good chance it will be one of our volunteers you speak to. Every one of our volunteers receives training before they start with us. Once on board, they keep up-to-date with refresher training and more informal, volunteer-led sessions. The latter often takes the form of ‘virtual’ coffee mornings. At the last one, the topic of conversation turned to: things I wish I had been told before my surgery.
Afterwards, I caught up with volunteer Debs and enlisted her help in capturing and recording some of the gems that came from this session. I thought readers of StomaTips might find them useful, especially those of you who are recently post-op or perhaps waiting for surgery.
Debs was diagnosed with stage 3 rectal cancer in February 2019. After chemotherapy and radiotherapy, she had surgery to remove the cancer and ended up with a temporary ileostomy. This was reversed in July 2020, but the cancer returned, and she had a total pelvic extenuation in January 2021. As a consequence, she now has two stomas, a colostomy and a urostomy. Hence, she was ideally placed to contribute to a discussion about things that people wish they had been told! Here is a summary of what she had to say:
Early days
‘I went into the surgery (ileostomy) thinking that afterwards, things would work in pretty much the same way as before, other than my poo would be collected in a bag. Something I wasn’t told, was that I would have no control over when I went to the toilet. It was a bit of a shock to discover that my stoma worked when it wanted to and would make noises too, which I couldn’t control either! With my urostomy, I didn’t appreciate beforehand that it would be working all the time and that at night I would need to connect to a “night” bag.
I left the hospital without much guidance about diet. I wasn’t told that my body might struggle to absorb certain foods and that I might need to be a bit wary about having things like popcorn. I know people’s experiences in this area are different after surgery and there is also an element of trial and error involved, but I don’t recall ever being told this and it would certainly have been useful information in those early days. In my case, I ended up with a B12 deficiency.
I also wish I’d known about parastomal hernias, what they were and things I could do to prevent getting one.
It’s possible, of course, that the doctors and nurses told me some of this. But to be honest, everything was so overwhelming at the time, there was only so much information I could take in. My surgeries also took place during the pandemic, which I don’t think helped either.’
Day-to-day life with a stoma
‘Understandably, your healthcare team’s focus in hospital is on your immediate recovery, getting you mobile again and ensuring you can look after your stoma(s). The day-to-day practical stuff of life with a stoma tends not to be covered in depth but becomes increasingly important as you start to feel better and want to do more. This is why I always suggest new ostomates check out Colostomy UK’s private Facebook group, as there is so much you can learn from others.
I think the biggest thing I wish I’d been told, was to be prepared. If you are, then it really helps with getting on with life. Here are a few examples of what I mean by being prepared. For me, it’s about thinking differently before going out:
- When we go away on holiday, I always take extra stoma supplies. If we are going abroad, I divide these between my hand luggage and my husband’s hand luggage
- If I go out for a long day trip, such as up to London, I take a change of clothes. Although accidents are rare for me now, it’s nice to know I’ve got things covered!
- If a trip out involves a long car journey, then I wear a drainable bag, just in case we get stuck in traffic
- With shorter trips out, to say the shops, I just take my emergency change kit. This comprises a few bags, protective seals, barrier film wipes, dry wipes, tape, disposal bags and a spare pair of knickers
When it comes to walking the dog, I just take a couple of bags in my coat pocket.
Unfortunately, there isn’t the space to record everything Debs had to say. But if you head over to the Colostomy UK website you can access for free all of our support literature, which is packed with valuable advice for new and not-so-new ostomates. You can also speak to one of the volunteers, just call our Stoma Helpline on 0800 328 4257. You never know, you might even get Debs!
Colostomy UK is a UK charity that supports and empowers people with stomas https://www.colostomyuk.org/