Wednesday, 15 October 2014

Stoma Stigma and Cancer

I've had an eventful month.

On Friday 19th September I was at work. That evening on the way home, I nipped in to the GP for the third time about the vicious aches and pains I'd been getting in my gut. I'd been several times before and been given antibiotics for suspected diverticulitis. These hadn't worked.

This time I had a locum GP, and in the way of the newly qualified person, he gave me a really thorough examination. Thanks to his particular attentiveness, by the end of the session, I'd been booked into the surgical assessment unit. "Pick up some pyjamas and get yourself up there". Of course the first thing I picked up was my mobile phone. No way was I going to be stuck in hospital over the weekend without twitter and facebook!

By Monday I'd had my scans and tests and was underneath a huddle of sweaty anaesthetists pressing on my throat and watching my consciousness evaporate.

It turns out my aches, pains and brain fog I've been getting over the last 3 months or so had been caused by a cancerous tumour in my bowel, about 7 cm long by 8 in diameter. This was whipped out, before I really understood it was even there, along with 10 inches of bowel that it had blocked.

Because the ends of my bowel were too infected to tie back together, I had an ileostostomy fitted. An ileostomy basically brings the now loose ends of your your bowel to a hole made in the surface of your stomach, so that you defecate through this new hole rather than out of your bum. (I am talking shit here, and there's no polite way to put it!).

After a few days of morphine, catheters and cannulas, I'm back out of hospital now and on the road to recovery. There's no sign of any further cancers, and soon I'll be embarking on a 6 month course of precautionary chemotherapy to improve the odds of making sure that no cancers return.

The signs that anything has happened are the scar that runs down my stomach and across my belly button, that is healing nicely, and the skin-coloured bag that sits on the right hand side of my belly and occasionally farts or gurgles.

I empty this stoma bag by kneeling in front of my toilet and unfastening a flap at the bottom, the faeces comes out as a rich brown semi-liquid. As well as emptying these bags, I change them every couple of days. There are occasional inconveniences - such as leaks, and this morning when I jumped out of bed and rushed downstairs to answer the phone, the bag actually burst (DISASTER!). As far as I can see this is effectively 'the worst that can happen', and a bucket, cloth and some disinfectant soon sorted out the problem. Worse things happen at sea.

Answering the phone at my own pace when I feel fully ready is my new strategy.

The advantages of the stoma massively outweigh ALL the inconveniences. The first meal I had when I got back from hospital was a STEAK SANDWICH. I haven't been able to eat steak for at least 5 or 6 years. I'm now eating all kinds of food I could never have dreamed of eating before, and I don't know if it's my imagination, but food actually seems to taste better.

Frankly I'm really pleased with it. I'm calling it my 'bag for life', because it does just that; keep me alive. It has got rid of the pain, it is enriching my eating experience.

About 3 days after mine was fitted, I was lieing in my hospital bed. A tall, strong man in his 70s had been admitted into the bed next to me, and I heard the doctor discussing his case with him and his wife: he had a very similar issue to me, a blockage that needed to be removed in his bowel. "We'll need to give him a stoma bag". "That will NEVER happen" said his wife, her voice trembling in that moment, that the man she loved, a man of strength and dignity might need to use such a device, even though it was clear the only alternative would be death. This moment of acute personal love and fear really brought home to me the level of stigma that still exists around colostomies, ileostomies and stomata.

Social stigma and fear like this about devices that actually help us live definitely don't help people who have quite enough to face up to dealing with pain and surgery. When the doctors had gone, I talked to both of them about my own stoma, and tried to show how simple and practical it was for me; that it was not so awful.

I heard Lynda Bellingham discussing her own bowel cancer on Radio 4, right around the time I was in hospital myself pointing out that the British "Don't do cancer and don't do poo". We need to change this. As the mystics say: "No mud, no lotus".

Looking at the websites and brochures brings home that 90% of the technologies around ostomies are based on concealment - there are all kinds of elaborate methods of making these devices invisible and inoffensive, as if the ostomy is something to hide away, a dark secret, something to feel ashamed and embarrassed by.

This however is changing: Having got my own stoma, I  started searching twitter for anyone else in the same situation. Turns out there's a small but lively underground movement of 'ostomates' (like the 'Ileo Atlas') who share tips and problems, and who even photograph and share their stoma pouches (I've taken one of Maggie Baldwin from the 'Stomawise' website) and one of Jason McIntosh from Awstomy. On twitter there's a whole hashtagful, under #getyourbellyout.

I'm massively in awe of these people. They straight away made me feel better about my own stoma, and by being so open they are helping lots of other people too. I'm planning at some point to take my own stoma photo to share too. I think it will be a good step for me to take, so watch this space! When people build communities together to resist and challenge stigma, something powerful is happening.

I've also found a few collections of quite colourful and funky stoma pouches. These seem a lot more fun than the bland flesh-tone ones. I don't know yet if I'd be able to get these more groovy pouches on prescription!

The history of the stoma is really fascinating. One really key fact is that the surgeons imagination tended to stop at the surgery. It was the people with stomas themselves who advanced the technologies of the pouch to what they are today, making them into something that people can live with practically in everyday life.

And I suppose this is what human beings keep doing. We adapt ourselves to circumstances, find new ways to live, and by doing so, find new ways to create our own resistance to some of those prevailing social fears about shit and cancer.

I've had my stoma for about 3 weeks, so I am still learning more about it, and about all the people I never really thought about before, who have great lives because they have stomas. I'll keep blogging to share what I'm learning. I'd love to hear your stories too!


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