Day 7: Never give up hope – What I’ve learnt from #7daysofIBD

This week has been all about raising awareness of what IBD is. I hope you’ve learnt something – I certainly have.

What always amazes me about the IBD community is how open, honest and brave the people who suffer from Crohn’s and Colitis are.

Back when I first became ill Crohn’s Disease and Ulcerative Colitis were relatively unknown, they were what Dr Christian Jessen would have described ‘an embarrassing illness’.

Talking about toilets was frowned upon – unless that is you were a lad who could fart really loudly, and then that was, well, your crowning glory.

Social media has it’s downsides (believe me I know) but for Crohn’s and Colitis it has been such a breath of fresh air.

The illness has gone from something people were frightened of talking about, hidden behind the toilet door, to having this massive community on twitter, Facebook, blogs and youtube full of people giving each other support and advice…and hope.

People proudly share their stories of bravery and their remarkable battles to go on to do amazing things, most of which I could only dream of: the ultra marathons; the world record attempts – even just wearing a bikini with a stoma.

The world is unrecognisable from the one in which the teenage me hid in the school toilets, tucking my feet up the side of the cubicle, and trying to be quiet as I tried to curl up in shame.

Now every single day celebrities, politicians and sport stars, and just incredible every day people are sharing their stories in local and national press….it’s remarkable.

It feels like a week doesn’t go by without IBD being in the tabloids, sometimes for weird ‘junk causes Crohn’s’ claims, but mostly for stories which make me want to punch the air and shout ‘you go girlfriend’ – now that would raise an eyebrow in the Welsh Assembly lobby.

Yes I wish people were still more understanding: especially when they tut at me for using the disabled loo –  if my can’t wait card works in Italy why do I sometimes need to pretend to be pregnant to skip the toilet queue when my bag is about to explode (sorry my little rant).

I remember as a teen hiding in the loos, trying to hide my frightening illness, wasting away with no idea what was happening to me – I was so weirded out by what was happening I would rather have died than told anyone.

I wonder what it would be like now for me, in a world of being able to google for help and advice.

But there is no point in looking back in that wishful way, I’m just so happy  things are on the way up for IBD: yes, there is still no cure, it is still a horrific illness, but awareness and understanding is growing on fundraiser, stoma bag selfie, and bare tummy at a time.

No one with IBD should ever feel alone again – get online, learn to laugh at those horrible moments with others, cry, smile, giggle, grumble and vent,  and just support each other.

No one should be defined by an illness – don’t let it rule you, share your experiences and show it you’re the boss.

Day 6: What to wear with an ostomy? What ostomy? #7daysofIBD

I’m no fashionista, but I like to look good – who doesn’t?

One of my biggest fears before my surgery was that I’d spend the rest of my life wandering around in sack-like clothes or simply become a nun.

I envisioned a future filled with sweat pants, baggy jumpers and shape-less dresses – looking like a washed-out celeb in a Pineapple tracksuit.

I also imagined a life without romance, I think I believed that I’d be better off living in a hovel somewhere than have my bowel taken away.

I’m ashamed to say that as a teen and a young woman vanity was the main reason I stubbornly refused the operation for years despite being in hideous amounts of pain.

Having the operation felt like giving up my youth – it didn’t matter that my young life so far had been marred by illness, and the operation promised me a new lease of life.

I was horrified of what it would do to my already shattered confidence and street-cred; basically as a teenager I simply couldn’t think of anything worse than having an ostomy bag.

I’d rather put up with the accidents, the blood and the constant toilet visits, than be thought of as a freak – well, more than people already thought a young girl who spent more time in a bathroom than the playground was.

I mean I wasn’t married, didn’t have kids, what would I tell people, what would they think?

The people they sent to talk to me where lovely, well and happy, but they were in their 50s and 60s and had grandchildren – I could’t relate to that.

Now I realise I needn’t have worried one bit: unless you know about it, or Winnie announces herself, you wouldn’t have a clue she was there.

It was only when I was in my mid 20s that the surgeons finally got a firm grip on me and this time I couldn’t and didn’t really want to get away/

Straight after my first surgery (well as soon as I had the energy) I went through my old clothes and packed anything that was really tight into a bag and shipped it off to a charity shop.

I needn’t have done, but I’m still glad I did.

Ironically having surgery did my wardrobe a lot of good: it made me grow up, and stop wearing outfits that honestly should have been left back in my student drinking days, or really never have seen the light of day at all.

Now

I get a lot of questions about what I wear, and how to dress with an ostomy.

My answer: wear whatever you want, what looks good, but most of all what you feel the most confident in.

You don’t want to wear something where you are constantly patting your bag, checking it, worrying that someone can see it – but you don’t want to feel like you’re wearing a smock either.

I’ve been pleasantly shocked at the array of things I can still wear. To be honest I can wear anything: I simply choose not to wear some things.

For example; I wouldn’t wear a crop top or a dress with gaps in that show my bag – I could, and good on anyone who does, I just don’t feel comfortable doing that.

I love maxi dresses and in total contrast short skirts, but I wouldn’t wear a skin tight body con dress, mostly because if my bag expands it’s too uncomfortable.

I also wouldn’t really wear something too sheer or that clingy gold material, mostly because you can see the shape of my bag through it.

On the days I feel weird from my bag (yes I do have days when I feel really self conscious about it) I distract attention from my stomach (not that anyone can see) with loud makeup, big hair and well, fabulous shoes – not that I need an excuse.

I usually have a little scarf in my handbag for if my bag fills up and I want to hide it – it’s a little handy tip I got from another blogger.

But really I can wear, and do wear, whatever I want: suits; jump suits; short dresses; pencil skits; ball gowns; see through blouses… and even shorts!

I do struggle to find a decent pair of jeans, but that’s because I need high-waist, a petite and a six, which is a hard combination to go by – if you are looking I find Next is the place to go.

I tailor what I wear to how I feel, what I’ve eaten (sometimes) and sometimes avoid eating certain things if I know I’m going to be wearing that tight dress.

I love the glamour – but some days I like my sweat pants, or PJs and baggy jumpers.

But that’s because I’m human, not because I have an ostomy.

 

Day 5: A battle of skin and bones: the ever changing size of IBD #7daysofIBD

I’ve always had an ongoing battle with my weight, let’s put that on record.

I have bad body confidence issues, and I rarely realise quite how tiny I am until I see pictures – basically I simply don’t see what other people see when they look at me.

I’m currently the happiest I have ever been with my weight. My training at the gym and healthy-ish eating regime has allowed me to get into the right-side-of-normal weight bracket for the first time since before my illness began.

But even now that I’m happy and well I still think people judge me.

I know when people look at me they think I’m too thin, skinny, anorexic even, but this is me – I am tiny, and it’s my body after all.

have a sexy stoma bag!!

Me & Winnie at Gay Pride in Bristol – just a little bit burnt

My comfizz underwear – amazing support but not sexy!!

Bend and stretch 🙂

Wow did I really try to eat all that?

Just after second op

gym

There is always so much said in the media about tiny people: we get a lot of bad press, and I guess I’m a bit of a hypocrite because when I look at thin girls I also jump to the same conclusions as everyone else.

But the fact of the matter is, while being skin and bone isn’t a good look, some people are just thin – either because we are built that way, or we have an illness you can’t see.

I have Ulcerative Colitis, and when I was model-skinny it was because my bowel and anything I put in my mouth was literally falling out into the toilet – I was tiny because I was chronically ill, in agonising pain and feeling like I was going to die.

I 100% did not appreciate someone coming up to me and saying, “that girl needs a good feed” or, even worse, “I wish I was as thin as you” – you really don’t, believe me!

I also didn’t appreciate people watching me eat ( know some did it out of concern) – or even worst commenting on how many times I went to the loo which was a major part of my condition.

I guess what’s always made all this worse is when the cake is passed round I can’t eat it – I might be lactose intolerant but the fact I turn it down seems to shout that I have an eating disorder.

Either way there is an assumption made (even by me shamefully) that we choose to be this size – and the looks and comments always hit you right where it hurts.

Over the years my body shape has morphed, with it being unrecognisable from year to year either through severe illness or healing drugs.

Looking back at pictures I hardly recognise the person at times…the moon faced girl, with a giant lollypop head (from steroids) balancing on a skeletal body; the bloated frame of a fresher enjoying booze at uni; and the painfully thin, stripped to her ribs teenager covered in bruises and wires.

I now know how terrifying it must have been for my family to see their daughter wasting away, especially in the months before they diagnosed me.

I’ve been so thin it has actually hurt.

Have you had that? 

It’s not just not a good look, it is actually painful to be that tiny. I’m talking about when your own ribs and spine stick out so much they cause you pain – when you can’t lie down because you’re so bony.

Yes, I’m not going to lie, I’m obsessed with my body. 110% obsessed with having a good, fit, healthy, and well, decent sized body, I love the gym and I eat well – but I will not weigh myself.

That’s because I am actually obsessed with my weight. 

After years of being forced to monitor it non-stop to check every ounce and kg vanishing from me down the toilet, it’s become ingrained in me to the point of an almost obsession, a bit like checking my poo.

So I only weigh myself when I have to (like when I am in hospital). And I now check my body through how comfortable I feel in my own skin, and that pair of jeans – it has got to a stage where I can say that I am frightened of loosing weight, and want to stay as I am.

Yes,  90% of all of my body image issues, battle with weight, and my constant collar bone is due to my battle with IBD – it can strip me of 2 stone in just a few weeks, it is frightening how fast I waste away.

But I will put this on the record, probably 10% of how tiny I am is down to the fact that I grew up thinking being thin was the way forward (due to magazines and pop stars) and even now, as an adult, adverts and movies tell me I need to be slender to be hot.

If it was up to me I would be more curvy, more athletic, and a bit more womanly – but I will never be that shape, my body simply isn’t made that way, so i work hard to look after what I’ve got.

I have my imperfections, and being small has taken it’s toll on my body and battered it over the years. I have Ulcerative Colitis, I have a stoma, and I have skin conditions and well have had osteoporosis since i was 24.

But for now I am healthy, and I am happy with how I am – even if I do struggle to get jeans to fit, and get endlessly frustrated by the lack of my size in the shops.

I would just love it if people would have thought over the years, when I was struggling to walk, vomiting and running back and forth to the loo, to think it might be insensitive before telling me to fatten up; calling me anorexic; or saying “i wish i was that thin”.

I was living on the edge of hospitalisation and in chronic pain – if my daughter is ever that thin I will be panicking – so no you don’t wish you were that thin!

Just a thought!

 

Day 3: A magical 28th birthday #7daysofIBD #7daysofstoma

I made it to the grand old age of 28 – it feels like an achievement.

I was after all a premature baby, who was born fighting.

Teamed with my Ulcerative Colitis it has taken a giant team of very dedicated people and a fantastic amount of love and patience from my family to get me this far.

I hope I’m not wasting the gift I’ve been given.

Yesterday was my birthday and I had the day off, accompanied by a stinking hangover. But despite the big headache I had a truly lovely day, deliriously pain free and felt very happy and loved indeed.

My birthdays are always a quiet affair. I like the simple things: a good meal, some wine, a lie in, and no chores all day.

Oh and fab gifts, loads of best wishes messages and some unexpected cards too.

I also ate the thing I try to avoid, as it blows me up like a whale – bread.

Chris spoilt me with some really gorgeous flowers, and we spent the day freezing and feeling sick from stuffing our faces with sweets wandering around the Christmas market stalls in Cardiff, with me getting soaked as someone wasn’t too great at holding a brolly.

I even found a vegan Welsh cake – which might not have helped with my twitchy tummy today.

It was all polished off with my favourite – not Winnie’s favourite – meal at Bills’, spinach, bacon and avocado salad and sweet potato fries….mmmm.

Here’s to many more healthy, happy and pain free birthdays for decades to come.

Day one – red, green and other weird coloured poop #7daysofIBD #7daysofstoma

Seeing red in your ostomy bag is a frightening experience.

Spotting blood where it isn’t meant to be is horrifying for anyone (if you’ve not experienced it I hope you never do), but after 14 years of Ulcerative Colitis seeing red is enough to make my world crumble.

It is the tipping point, the moment I have to stop kidding myself that the agonising pain will vanish (even though i know it never will) and the horrible realisation that I will have to drag myself to hospital.

When I say spotting blood it is more like a massacre – not that I want to frighten any of you.

Anyway that’s beside the point. For the past year I’ve lived without red in my stools – well until I eat something like tomato soup, and then I nearly always forget I’ve eaten it and freak out.

Some foods do weird and wonderful things to my stoma output and turn it bizarre colours which would startle any right minded person and have you running to the doctors whispering “why is my poop bright purple? What exotic disease have I got?”

You probably wouldn’t stop to think you might have eaten beetroot – but there again most people don’t examine their poo for weird qualities like people with IBD have drummed in them to do.

Today I forgot I’d eaten tomato soup, hence I had a little heart jumping moment (like when I see a large spider lurking in the bathroom) when I saw the bright red colour of my stoma bag contents.

As a now slightly seasoned ostomate I’ve taken to taking a little moment to think while I’m sat on the loo – I stop and say ‘Rach what have you eaten that might have caused this…’, before I allow myself to properly freak out that my illness is back or has morphed into Crohn’s disease.

It’s a good job I did – the memory of the tomato soup came flooding back and I visibly relaxed.

morning

gym

dinner

The first time my output went green I went mental…what the hell, what did it mean, I hadn’t even eaten anything green!

Green is pretty normal for me: I adore spinach even if my stoma does not.

But for most green is a sign that what you are eating simply isn’t being absorbed – it means you’re having too much fibre, or your food is going through you. This happens to me a lot, as I insist on eating the foods my digestive system doesn’t like, such as: rocket, spinach, cucumbers – which do from time to time cause me a lot of pain through blockages.

I remember being totally freaked out though the day my output went bright green – I mean pretty much luminous – a consequence of some very horrible cocktails the night before.

Bad colourings in cocktails have also led to slightly purple output, bright red and a slightly blue tint – always a really horrendous experience when you’re hungover and confused enough without thinking your dying.

In other news I went to the gym, got drenched posting letters and almost got lifted off my feet on the way home – thanks lovely Cardiff weather.