Why you should never judge someone's weight with IBD

In the past couple of years particularly, I often find myself in the face of a recurring question: "Wow, how do you stay so skinny?"

It's something that comes up time and time again, like some annoying stuck record.

Of course, there are some people out there who will immediately think I'm being stupid for even writing this. "It's a complement, isn't it?", they all cry, "I wish I could be as skinny as you are! Why are you complaining?"

The thing is, my extremely slender frame and very pale complexion are not something I feel particularly proud about. Being 'this thin' does not always lead to complements - in fact, more often, it leads to criticism from people who barely even know me.

Nearly 2 years ago, I became so sick with Ulcerative Colitis that I lost over two stones, my weight plummeting to just over 6st. I remember stepping out of the shower a week or two after surgery and staring at myself in the full length mirror. I was unrecognisable. Ribes sticking out, black rings under my eyes, a fat puffy face from steroids. Any cleavage had completely vanished, with a huge surgical scar still raw from my ribs to bikini line, and a new stoma bag on. Looking at myself at that moment, I was a skeleton.

Over the next year, I did manage to put on a lot of my weight - the steroid hunger helped a lot - and I eventually made it back to around 8 stones. Then, my weight just stopped. At that point. And to this day, no matter how much I eat, or how unhealthy it is, or how little exercise I do, I don't put on an ounce more. Sometimes I even lose more.

Still with a bit of a moon-face after op 1

Since that moment, I've been in a lot of situations where my weight gets criticised. People see young girl, trying to be trendy - oh, she must be starving herself. When it's peers, it's annoying but excusable - but when it's medical professionals too, it really takes the biscuit. I signed up at my university GP and went for a 'new patient health check' only for the nurse to immediately tell me, 'you're too thin, you need to eat more' with the look of a condescending grandma on her face. You have my medical notes IN FRONT OF YOU. BOWEL DISEASE. PLEASE READ THEM.

Or when in hospital, a week before the first emergency surgery, when the man taking orders tried to offer me multiple items from the normal fibre content menu (despite me being on a non-fibre diet at this point) and my refusal being met with, 'you really should eat more, you know. It's not good to starve yourself'.

Last year, I went to play the piano at a family wedding. One of the guests got chatting to me, and she came out with it, "you're so skinny! How do you stay like that?" "Well, I have IBD..." "Oooh, I wish I had a bit of IBD!" Really? Really. Hmm, maybe I wish you did, too, for a day, before you make that sort of judgement.

For a long while after my last surgery, I was also anaemic. It gave me a pretty pallid complexion. I particularly didn't like this, so wasn't that amused when a man actually asked me, 'are you afraid of the sun?' I smiled and fake-laughed at this quip of insensitive humour, silently screaming in my head, 'no, but I'm afraid of IBD and emergency surgery, you silly man!' (or words to that effect)

It also goes the other way. Lots of UC and Crohn's sufferers have to take steroids in order to keep their conditions under control - a really nasty set of drugs that among lots of other side effects (excessive hair growth, insomnia and, when you do sleep, hallucinatory dreams - yay!) make you gain weight, particularly in the facial area. A direct side effect of steroids is 'Cushing's syndrome', where the face takes on a rounded, 'moon' like appearance due to water retention (often dubbed 'the moon face').

Steroids also make you exceedingly hungry. No, I mean, like you have to eat right now, or you're going to starve. No, that eighth meal of the day really isn't enough. Feed me more please. If you don't eat something, your stomach actually hurts. This isn't some psychological symptom you can ignore. The hunger is oh-so real, and needs satisfying. Again. And again. Seriously, night-time fridge raids became a serious thing. Which yeah, can make you gain weight. Deal with it, judgemental people.

Added to which, typically 'unhealthy' food is sometimes the only thing that will settle an IBD stomach. You might not believe me when I tell you that since my stoma operation I got told to eat white bread not brown, drink lucozade sport and eat salty crisps to keep me hydrated, and to add salt to my food. It's a complete flip-over of what we're ever told about our health. The amount of raised eyebrows I get when asking for salt at a meal - even after discreetly explaining that it's a medical issue - is often met with a laugh, or a 'yeah right' if I'm with the wrong people.

So if a person with IBD is in the middle of a flare and the only thing that is going to fill them up at that moment is a bowl of chips, then LET them eat their flippin' bowl of chips. Don't tell them they're not helping themselves, or somehow 'making their disease worse'. That green leafy salad will probably cause a truck load of more problems. Our society is so full of assumptions and judgements based on appearance, or people feeling the need to comment on others without knowing anything that person has been through. If someone's fat, thin, or anything in between, what gives you the right to say anything at all?

The automatic assumption that I'm a young female, so I must have an eating disorder, is tiresome. Ideally, I wish I weighed more than I do. Not a whole load, just an extra half stone would be fantastic. Legs that look a bit less stick-like, or wrists that don't look like they're about to snap. The thing is, it's not just an appearance thing. I get tired a lot more quickly than I used to before surgery. I'm constantly feeling dehydrated, no matter how much I drink, and on some occasions my stoma transit is so quick that my food comes back out whole. I doubt much nutrients have been absorbed there.

On a final note, having IBD is already a battle. Constantly planning your life around your health, whether than be medication or using a stoma bag, worrying about flares or not making it to the toilet, is enough of a stress without your nearest and dearest (or complete strangers) judging you on your weight. Nobody chooses to have IBD, or the effects that come with it.

So, back to your question, "why are you so skinny?" It's called the incurable bowel disease diet, followed by the save-my-upset-stomach meal plan, with a touch of the have-your-whole-colon removed exercise regime. Really effective, by the way - why not try it for yourself!