I am an energetic, enthusiastic and ambitious young woman, embracing her life with an ostomy bag and free from the pain of Ulcerative Colitis. For 14 years I suffered from crippling pain, fatigue and constant diarrhoea, battling to get through every day. I lived in fear of surgery and life with a stoma, I thought it would make me feel undesirable and disgusting and, for a long time, thought I would rather die. But last year I ran out of options and had a subtotal ileostomy, leaving me with a temporary ostomy bag. I immediately felt like a new woman. I was suddenly able to do what I wanted when I wanted instead of having my life ruled by my dodgy bowel, which often left me unable to leave the house.
I can’t eat sprouts. They are possibly one of the hardest things I’ve ever tried to digest – that’s just one of the little facts I discovered last Christmas as I enjoyed my first festive holiday with an ostomy.
Last year was probably the best Christmas of my adult life. For the first time I can remember I enjoyed turkey and all the trimmings without the constant pain of Ulcerative Colitis. I managed to sit through almost the entire meal (yes all the courses), unwrap all my presents and even join in all the family games with only a few visits to the bathroom.
It was magical. I don’t think I have ever been so happy.
But, despite the pain free Christmas, there were still some issues especially around the dinner table. I learnt a few lessons the hard way, mostly not to get carried away with the festive celebrations, office parties and late night drinking, and to avoid certain foods at all costs, no matter how tempting they might be.
I’ve never been a great drinker, but I try, which is always my downfall. In the run up to Christmas the temptation to go out for drinks after work, have a tipple by the fire, or enjoy a glass of wine with my family, tends to get the better of me. It has a horrible affect on my ostomy, makes me dehydrated, tired, grouchy and messes with my output something rotten.
Since my operation alcohol doesn’t taste the same, it isn’t worth the pain or the expense. Ok I still love a nice glass of wine (or three I hear you yell) but I pay the price. Alcohol in any form has started to have a really schizophrenic impact on my body – some nights I only have to sniff a glass of wine and I’m wasted, others I can drink a fair amount and just be a little merry and giggle, other times I rather humiliatingly fall fast asleep – but really it doesn’t seem to matter how much I inhale I still feel like I’ve bathed in a vat of vodka the next morning.
These days I’m more careful than ever, and I think that’s mostly due to the fear of having to change my ostomy bag when I’m so plastered I can’t see my own hands. I also find alcohol can have an undesirable effect on my Stoma output, either turning everything to water or stopping it working all together. Also changing your bag while feeling like puke is never desirable – mistakes have been known to be made.
The indulgent food can also be too much for Winnie. This year I will be avoiding; sprouts, chestnuts, cranberries, Christmas cake, green beans, and many more little treats. If you have an ostomy and don’t want to be in agony for hours, don’t eat sprouts. I know many people would be relieved to find out they can avoid the little green balls, but I’m quite gutted about this. Last Boxing Day I spent an excrutiating couple of hours passing what felt like a giant boulder through my stoma. Somehow, despite obviously chewing it to shreds, it came out whole.
Living with an ostomy is about experimenting. Just like living with IBD everyone’s body and illness reacts differently. I know people with Crohn’s Disease who can scoff scorching hot curries, down pint after pint of beer, smoke and god knows what else without any impact on their day-to-day illness. Others struggle with every morsel of food placed in their mouths. I’m more among the latter, but I can get away with more than most – mine is brought on by pretty much nothing at all, just when it wants to ruin my life (and I’m not being overdramatic).
I know people with ostomy bags who eat raw food all day – I struggle with spinach but I love it too much to stop. I know one day my love for mushrooms will cause a very problematic blockage, and I have learnt the importance of thoroughly chewing. But despite this things still come out whole – it literally makes no sense whatsoever.
But despite all this I know this year is going to be magical. I’m excited to spend time with my family, eat, drink and be merry. I’m just going to have to be careful, without turning into Scrooge.
AL/1850/12.14/0.001. Date of prep: Dec 2014.