It was an ominous sign I shouldn’t have ignored. When I got to the hospital for my colon resection in April, the first person I saw was a stoma nurse. I lay down on the bed and she measured me up for either a colostomy or an ileostomy. (The colostomy bag comes out of the large intestine; the ileostomy comes from the small.) That was funny, I thought, as she was drawing big dots on me with a permanent marker, they hadn’t said anything about a bag. Or maybe they had and maybe I just forgot. I hoped they weren’t going to sew my asshole shut too.
‘About 5 percent of patients will need them,’ the nurse said, ‘it’s just a precaution, darling, don’t worry.’ I wasn’t particularly worried actually. The bag wasn’t going to kill me — if it helped get me better it was the least of my worries. For now, they were just black dots, covered with a bit of cling film. Then, in those few horrible pre-op days, I was more worried about the possibility of peritoneal metastasis (a question mark on a scan), which would drastically worsen my prognosis. So of all things I was worried about now, I could deal with the specter of a shit bag.
When I came around groggily in intensive care after the operation I had a quick feel around downstairs — a sort of roll call for my organs. Not that I could distinguish much with all the dressings and drains and the numbness and I was so high anyway I’m not sure if I’d be able to distinguish my groin from my armpit, but there was a new addition to the unit: a bag attached to my abdomen on the right-hand side.
The doctor explained that I had an ileostomy and I groggily said something — an attempt at a stiff upper lip as if I was reclining on a bed in the English Patient in a bomb-shattered villa — ‘very well, very well, yes no pain at all, whatever needs to be done, doctor.’ The surgeon later explained that the bag was only for six months, to let my colon heal. They would reverse it after chemo and I would be crapping again how the Lord intended.
Back on the ward, still in a twilight zone, comfortable and high as a kite from the epidural, not very much came from the stoma (the looped stub of small intestine that protrudes from my skin and from which the poo empties into the bag.) I will spare you the picture of my actual stub. I threatened to show it to my wife and she said she would leave me if I did, cancer or no cancer. (If you’re intrigued, there are plenty of pictures on the Internet. www.myhotstomapics.com is particularly good.)
At first, the emptying was done by the nurses, but after watching them doing it enough, I finally managed to sit down on the toilet like one of those emasculated males whose wives insist on them peeing sitting down, and emptied it myself. I wiped my new plastic anus and then folded the little pouch shut — no more unhygienic than going the normal way really.
The next big step was changing the bag, something usually done every two or three days. The stoma nurse, who from the beginning has been quite lovely, showed me how one morning. I stood naked in the hospital bathroom and she showed me how to remove the bag with some spray adhesive remover. The bag peeled off and I saw the stump for the first time, red and bold, like the tip of an angry and underused penis, or a recoiled sea anemone under attack. The nurse showed me how to wipe it with a tissue and then clean around it, carefully carefully over the stitches. I could feel myself physically shaking, unsettled more by how it looked and the very idea of this thing poking out that should have remained tucked up inside my body than how it physically felt. As I quickly discovered, there are no nerve endings in the stoma, so when I touched it I couldn’t feel a thing.
The nurse showed me how to dry the skin around the stoma and then fold over the new bag. When it was on and affixed I felt a minor sense of accomplishment and, still shaking, caught a glimpse of myself in the mirror: gaunt, heavy-eyed, standing naked with a distended belly, my buttocks sagging like an old man. The nurse said I had done brilliantly and I felt about 80.
I quickly got in the routine of living with the stoma. I can’t eat raw vegetables or salads and salty carbohydrates like crisps are ideal, so not all bad then. A diet of Doritos and Monster Munch could be worse. I have managed to run with it, by pulling up my boxer shorts grandfather-style to prevent it from moving around, and have had a night out in London with friends wearing a regular tight-ish shirt, without the fear that everyone could see that I was packing a bag of shite. It’s the little things, but they really do matter.
There was one particularly bad moment, though. Since my diagnosis, I have thrived on adrenaline, a good deal of gallows humor, and while I certainly cried a lot with Marketa in the first few weeks and done all the why-mes and self pity blah blah blah, I don’t think I had hit really rock bottom. That moment came when I was in Cornwall staying with my Mum, not long after being discharged from hospital. I had been having problems with my stoma for a day or two. The pouch was coming away and not sticking to my body. I had had a few leaks when the bag got too full at night. I wasn’t sure if the hole in the pouch wasn’t cut right or whether it was because the skin was irritated, but I could feel it pulling and the bag was constantly coming away from my skin. You don’t feel very confident popping out to the shops when you’re worried you’re going to leave a trail of shit behind you.
So, when my mother went out, I set about changing it. I set up all my cloths, sprays to loosen the bag’s adhesive. I prepared my razor to shave that part of my stomach and opened a pot of cream to treat the sore part. At first everything went according to plan and I took off the bag to reveal the swollen red lump of intestine. I cleaned everything as the stoma nurse had shown me and then, just when I was about to place a new bag on, the bastard became active, pumping out liquid at a furious rate, first into the sink then down onto the floor and the bath mat. I grabbed some cloths and cleaned up the mess but it just kept pumping out, liquid shit dripping down onto my scar dressings and onto my legs. Every time I got myself clean, and stood prepared to attach the bag, the stoma began erupting again, despite me actually shouting at it and even imploring God to make it stop.
Then I really lost it and started sobbing, hyperventilating, which just made the stoma weep more brown liquid onto the floor, and then I bent down to pick up a towel, and that movement caused the biggest eruption of all, and with liquid shit everywhere I crumpled into a ball on the floor, crying uncontrollably, producing sounds from deep within which I never thought were possible.
It was a low. But the good thing about having a mini-meltdown is there only one way to go from there. After lying on the floor for a few minutes and looking up at the blue, cloudless sky through the skylight, and after the various liquid flows had begun to subside, I realized that I was a 36-year-old man lying on my mother’s bathroom floor in the foetal position surrounded by little puddles of shit. It was probably time to get up. So I did, and thankfully my stoma lava flow ceased, with just the odd spurt now and then, and I managed to dry my skin and get the new bag on. It’s funny how a good cry and a fresh bag can make the day look a hell of a lot brighter.
There are plenty of forums for fellow ostomites, some of them very helpful in terms of care and diet. I have learned, for example, just how relieving it is to clean my stoma in the shower and then do my bag change after that, all clean and relaxed. On some of the forums, people become almost affectionate towards their stomas. They give them names like Rod or Sylvia. (Do they sit next to their partners in bed and say, ‘I think she looks like a Sylvia, or maybe Madge?’ I am glad I am not in bed with those people.) But I shouldn’t judge as there are many people who have theirs for life and it’s probably best at least to come to some kind of mutual acceptance and understanding. You’d have to really.
I don’t accept mine, though. I hate it and I can’t wait to be rid of it. It is a constant reminder that I am sick. If I named it I would call it “cancer” or “cockface,” and if it were my child I would neglect it.