Guest Journal: My Life With a Stoma
By Phil
My journey started back in the mid 80s when I got gastric flu, though this only became clear in recent times.
From that time on I always had stomach issues, with frequent visits to the toilet and a constant feeling of needing to go.
Despite many trips to the doctors, I was always dismissed with “it’s just a stomach bug, don’t eat for 24 hours and drink plenty of fluids”. This, of course, wasn’t the case.
It was 1999 and, after suffering for many years, I decided that enough was enough and booked a further doctors appointment. As it turned out, my usual doctor was on holiday and I saw a locum. I’m glad I did as, after a blood test and a repeat visit to discuss the results, he declared “Aha, you’ve got Coeliacs disease!”
A big sigh of relief! A change of diet, did settle things down a bit, but the regular toilet visits and the constant feeling of needing to go didn’t improve that much.
This led to many anxiety issues: travelling on public transport, going out in an evening, always researching destinations for toilets, always going “just in case” (even when not necessary) before going out anywhere, etc.
This really did have a big impact on my mental health; something I am still working on to this day. Forgetting 40 years of “normal” takes some doing and I think this has been one of the biggest hurdles I have had to face.
Roll on 2023 when I got a bowel cancer screening kit through the post, as my then age put me in sync with the screening programme. I dutifully sent it back.
A week or so later we had popped out for the morning, as it was our wedding anniversary, and returned home to quite a large letter behind the door. I knew straight away what it was - a letter of that thickness wasn’t bringing an all clear.
The test results showed signs of blood and I was invited for an initial telephone consultation to discuss the options.
There had always been signs of blood, but it always looked “fresh” and was only ever in small quantities. I had always put this down to the years of constantly “going”.
Never having had a colonoscopy before I didn’t know what to expect. I said no to sedation as I didn’t like the sound of that. I was talked through the gas and air but, after a few trial sucks, I handed it back as I didn’t feel it had any affect!
I was in there for sometime (approaching 3 hours) during which I had several polyps removed, the largest being 38mm. Some size!
At the start of the colonoscopy something was spotted that they said they’d come back to. This turned out to be a lesion that fully wrapped around my colon and was recorded at 12cm long.
It was mentioned that this would need surgery. I’d normally get that quick shock, sickly nervous feeling at such news but, for some inexplicable reason, I remained quite calm.
There were several back and forth discussions regarding the best course of action, with a TEMS procedure being offered, then retracted, on a number of occasions.
Eventually, the surgeon called me in for a stigmoidoscopy, during which he said TEMS was definitely not an option. The lesion was also recorded at 7cm during this procedure. I don’t think it had shrunk, just a different pair of eyes during the examination.
An MRI followed, no doubt to get a more detailed look.
At a consultation shortly afterwards I was told that the MRI showed that the lymph nodes under the lesion were swollen, which could have been due to a number of reasons but cancer was the main suspect.
A stoma (something I had already told myself was inevitable) was indeed inevitable. However, I was also told that a resection wasn’t possible, due to the lesion’s close proximity to the outside world, and I would also have to undergo an Abdomino Perennial Resection as well.
I later learned that this is also known as Barbie Butt, or Ken Butt.
This was a lot to take in, the consultation room was quite small (with no windows) and it was also hot. I smiled and said I needed some air, leaving my wife to discuss things further.
Mr Bagingtons (Ralph to his friends) was born on the 5th of October 2023. I had never undergone anything like this before. I wasn’t sure what to expect. Weirdly, I had a strange calm all the way through.
I was in surgery for 8 hours and recovery for 3, mainly as my haemoglobin was hovering around the transfusion level. As it stabilised (no transfusion) I was released to the ward.
I was released from hospital 7 days later. It could have gone more smoothly thinking back: I was up most of that night with dehydration, wasn’t given my night time basal insulin dose, and also had the physiotherapist turn up at 08:00 the following morning expecting me to sit in a chair and do some exercises!
My drain wound also leaked for two weeks after my release and I had to have the district nurse in for regular visits.
My biopsy results showed that, while there were high levels of dysplasia, I was clear of cancer and needed no further treatment from that point.
My wife declared 2023 to be a very bad year, but thinking about it, it was the year I got “fixed” and I could start to get my life back so it wasn’t all that bad!
I am still working on telling my head that things have now changed and I don’t have to worry about the things I used to get anxious over. However, a 40 odd year old habit is a very tricky one to shake, though I’m getting there!
What are your top 5 tips to building confidence & self-love:
- Don’t be ashamed of your new look. It’s a life saver, you just do some things a bit differently now.
- Have a look on social media for other ostomates, and also for local groups. Peer support can help so much.
- Share your story whenever you can. I found this really useful to help my self confidence.
- Dress as you always have done. If you flash a bit of stoma bag, then so be it - it can be the start of a great conversation! There are also many stoma bag cover designs which will complement an outfit, or mood!
- You made it! You are special, you are loved!
Do you have a story to tell? If you would like to share your story to raise awareness with us and help inspire others in the ostomate community, please get in touch. We would love to hear from you.
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