On July 14th 2017, I celebrated a pretty big 10-year anniversary. It wasn't an amazing career milestone or hitting my Tin wedding anniversary. Nope, it’s 10 years of living with a colostomy bag.
Now, if someone had said to me 3 years ago I would talk to even my closest friends and family about this ‘thing,’ let alone millions of you, I would have laughed them out of the bar (that’s where we would have been, as I would have had to be consuming a lot of alcohol to come up with an idea that was so insane).
So what changed? Why now? Why at all? We all have our little secrets, our issues to bear, the things about us we don’t want the whole world to know and my colostomy bag was mine. However, a lot has changed in the last few years and there are so many things I wish I’d known earlier on.
So here I am, ten years later and I’ve decided the best way to mark the occasion is to write a message to the old me and to all the other women who may just be starting out on that same journey, about the new world I was entering.
1. As lovely as the nurses are, do not always trust their advice
Obviously I don’t mean medically – ALWAYS take their advised medically! They are the pros at helping you when you need to learn how to attach it, what to do when it’s sore or won’t stick (and yes that really does happen….) and what not to eat. However, when it comes to adjusting to your new body and how to cope with it in the real world, in all honestly, unless they have one, they really have no clue.
I remember my Stoma nurse advising me to give it a name. I mean this woman was lovely - she smiled 24/7, clearly had a heart of gold and there was no colostomy question she did not have the answer to – but as a 22-year-old (let’s face it, pretty sarcastic and hardened) woman, with a world that had been turned upside down, naming the newly attached bag, “Something nice like Jo” and “thinking of it like a new friend,” did nothing other than make me hate it even more. From that day onwards, I called it ‘Thing’. My Thing, The Thing… it was always Thing. In my head, I think that calling it that meant I could talk about it and nobody would know what I was talking about. In reality, I believe it was a way of devaluing it and making it seem irrelevant to my life – which obviously it wasn’t, as it had probably saved it!
Do you know what I call it now? My bag. Because that is exactly what it is. Crazy that isn’t it! Only took me nearly 10 years to get there…
2. Play by the eating rules, to a degree
When you first get your bag, you are given a list of about 2 billion things you cannot eat. You’re scarred, you have a bag attached to you and you’ve gone through all that to be able to eat normally again, and the first thing you’re told is you can’t actually eat any of the foods you want to.
Whilst after any operation on the bowel you have to be careful what you eat, over time I have dipped my toe and found there are plenty on that ‘List of Doom’ that I can still enjoy and without any hospital visits or complications – but there are also some I really can’t! Sweetcorn and mushrooms are my nemesis. Everybody is different, so the NHS and online lists encompass all the possible foods that can affect anybody and everybody, to be safe. I’m definitely not saying go and try all the foods they say don’t, but what I am saying is learn about your body and the foods that work for you, with medical supervision.
If you want to test the water do small (and I mean minuscule!) tasters and chew them a lot to ensure they actually go through your stoma. If your body doesn’t like it, it will tell you. My only message is this, don’t be fear mongered into living a boring and tasteless diet. Trust your gut a little – metaphorically and literally! Once you know what you really can’t eat, let people know – friends, family, restaurants – if there is something that doesn’t agree. The smallest amount can cause a night full of horrific stomach cramps or, even worse, a trip to A&E.
3. #Realtalk: Honestly, nobody really cares
Harsh but true. Whether it is partners, friends, family or colleagues, does your bag affect their life? Are you really any different to them as a person if you do or don’t have it? The answer is no. I have shared hotel rooms with friends for entire weekends and they have been none the wiser that I am pooping into a bag whilst lying next to them. As gross as that sounds, it is fact. I can sneak my bags and dressings into a bathroom and do a change quicker than most women can get changed into their PJs.
4. Don’t be afraid to get it out, within reason
I mean, I’m not suggesting you start stripping and changing your bag in front of your friends and colleagues – let’s face it seeing someone’s intestines is a bit like seeing someone naked. However, I actually think it’s quite healthy to not hide it away entirely - it gives people a glimpse and stops it being a dirty secret – minus the potential overshare! The people who I have shared it with are intrigued, never disgusted and after a quick fire of 2-3 questions, (usually: “how does it attach?”, “Does it hurt?” and “Is there anything I shouldn’t cook when you come round?”), continue with their day and lives.
5. Take the pressure off dating with some planning
My biggest test of the ‘how much do I say?’ conundrum, was re-joining the dating world. How do you break it to somebody you have met a couple of times that you have a bag? Do you tell them before you go to bed together? Do you wait and see how horrified they are when the time comes and see if either their desperation for sex or fear of the bag wins out?
I think this was a huge turning point for me. I am a Strategic Sales Manager and therefore Strategy was key – I needed to protect myself, give them a ‘Get Out Of Jail Free Card’, but also not scare them off. I had a plan! I picked my favourite underwear, took a pretty sexy (even if I do say so myself!) picture and saved it somewhere hidden on my phone. If after a couple of dates, I knew the next one was likely to involve the bag being ‘exposed’, I would drop them a line giving them a heads up, send the picture and wait and see what happened next. The beauty of the modern age we live in!
Do you know what, not one guy ever cancelled! I mean, I suppose they knew they had sex guaranteed at that point (and obviously I have a dazzling personality…), but even if it did bother them, it wasn’t enough to not want to see me again. That’s when the lightbulb came on and I realised everyone has their issues. To some people the fear and anxiety I had behind every picture message I sent, was the same they had when telling me about their kids or the past breakups. We all have a secret.
6. There really is strength in numbers
For the first seven years of having my bag, bar the mandatory conversations with medical professionals and immediate family, I did not want to talk about it, learn about it or even see it. Hand on heart – it repulsed me! Was it denial? Was I ashamed? Was I scared? Probably a mixture of all three. I then read a blog by Jessica Grossman, the founder of Uncover Ostomy, which is a website dedicated to removing the stigma attached to living with Colostomy and Ileostomy bag.
Through here, I started to read real stories, from real people, that reassure you that you are not alone and your fears and worries are often shared. I now follow a number of ostomy advocates on Instagram and Facebook and love seeing their stories on a daily basis and seeing they all have bad days too.
7. Educate and be educated
Whilst I do not have the time, or to be honest the inclination, to take on the world of Ostomy education, (I do have a full time job, fiancé, step son and a completely neglected gym schedule to tend to!), what I can do is educate those around me.
I have a 3-year-old niece who, like most toddlers, has a built-in inability to let anybody go to the toilet alone. She is always two paces behind and wants to be talked through the entire experience and quiz you along the way. I remember so vividly the first day she saw my bag on one of our many toilet adventures.
“What is that Aunty Liz?”
“That is my bag.”
“Why do you have that?”
“My tummy doesn’t work the same as yours, it was poorly and so now rather than going to the toilet through my bottom, my poo goes into a bag and I empty it.”
That simple! She now always knows I have a bag and it is the complete norm for her, which I absolutely love, because I know now that if she comes across a friend at school or a future boyfriend who has a colostomy bag, she will understand what it is, how it works and genuinely believe it is the norm.
That is the kind of education we can all do. There is so much talk about prejudice and bullying in the media and without getting on my soap box, I really believe educating early is so key to the perception of ‘normality’. These days I am proud to talk to any toddler, friend, boss or customer to help raise awareness around my bag and I really hope they do the same.
8. Remember why you have it
Whilst my bag has bought its challenges, in reality it has stopped me from having a Crohn's flare up for nearly 10 years. That on its own makes it absolutely amazing! Yes, it may have its off days (don’t we all..), it has leaked at the worst of times (yes it has happened during sex!), it makes noises during business meetings (coughing is key….) and means I always have to plan a little bit more. But would I rather go back to hours on end on the toilet, endless hospital stays and weeks on medication? Absolutely not.
As my amazing fiancé always says, he loves my bag, because it is a part of me and it keeps the woman he loves healthy. I hate to admit it, but he is right – first time for everything I guess!
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