It’s not all about poo – five things about stomas and IBD this #WorldIBDDay

Last year over 21,000 colostomy bags were prescribed across Wales.

Take a second to think about that….21,000.

Now, that’s a lot of people who’ve had major bowel surgery in a small nation.

According to Google (the source of all things) 3.063 million people live in Wales, so no matter how you look at it there are a lot of people living here who are getting on with life with a stoma.

I have boxes of appliances (a posh word for bags) in my little flat – and so many lotions and potions for my stoma I have a dedicated bookcase thing for them all – I simply can’t picture what 21,000 bags looks like.

Yes, it cost £4,189,877.07 , but as someone with a permanent stoma I can’t live without my bag…..I’m not sure the same can be said for the £5,105,411 spent dispensing paracetamol in the last 365 days.

Today is World IBD Day, and in the spirit of awareness raising I thought I would take a few minutes to destroy some myths about living with IBD and a stoma is like, by answering a few of those enjoying questions I tend to get thrown my way which really really really wind me up!

I’m not going to try and explain to you exactly what Inflammatory Bowel Disease is, as Crohn’s and Colitis UK do a much better job at it…see photo below.

Since I was diagnosed with Ulcerative Colitis, well YONKS ago, awareness of IBD has gone through the roof.

But some of the things people say to me – even friends – show that there is still a lot of stigma and confusion out there…..and at times a lot of blame is laid at sufferers doors.

So here are my top FIVE myth busters – basically all the things people say to me or have been dying to ask me for years, and have the bubbled over and burst out in a moment of total honesty after a few drinks….

Well, you don’t look sick?

Why thank you very much, that’s very nice of you to say……..

Argh! This is one of those statements which has followed me around my whole life….and it is a massive lie as I often looked horrendously sick.

Not all illnesses show, FACT, and not all disabilities mean being in a wheelchair, FACT. Some chronic conditions are invisible – but that doesn’t mean we are making it up.

Unless I wore a badge or had a sign over my head you wouldn’t know I had ulcerative colitis, and unless I wear a bikini (or you are lucky/unlucky enough to see me naked) you wouldn’t know I had an ostomy.

It’s always really upset me when people think I am making my illness up. Why the hell would I? Who would pretend to have Ulcerative Colitis: It’s not exactly glamorous.

It’s humiliating being questioned and getting dirty looks when you use a disabled bathroom, being stopped at airport security to have your ostomy bag checked for drugs, or running around like a maniac looking for a toilet before you have an accident.

I’ve spent a lot of my life in an awful lot of pain, in hospital, and then recovering. I spent most of my teenage years living a daily battle, and I’ve got the scars to show for it.

But I shouldn’t have to life my t-shirt to show them to you for you to believe me…..my illness is not Santa.

Didn’t you cause your Ulcerative Colitis through eating junk?

Give me a break! No, absolutely, and unequivocally I did not.

Who the bloody hell knows what causes Ulcerative Colitis and Crohn’s Disease….but I can tell you one thing, me eating some sweets 100% didn’t make me ill.

I once appeared on the telly to chat about UC and was asked about this….my reaction was not good.

I was brought up on a healthy diet of home-cooked food, no take aways, in a house hold of non-smokers. I was too young to drink, and I was a studious school girl who ran for her cross-country team and played in a local brass band.

Even if i’d stuffed my face with rubbish and drank etc I wouldn’t deserve this….no one would.

At the end of the day, I will be the first to admit that my diet since I’ve been an adult has been far from perfect. I probably drink too much wine, and eat too many sweets (I have cut down massively), but I mostly live off spinach, fish and pasta.

But at the end of the day, I’m not injecting heroin into my eyeballs am I?

Can you plug up your stoma? Do you have to open a valve to poop?

This may sound silly, but I’ve been asked these things.

The answer to both is NO. The first one is dangerous, the second is just a bit confusing.

I still poo, but just in a different way. While others poo though their bum (put in a crude way) I poo in a bag….It may sound gross, but it’s not dirty or unhygienic. Well, no more so then the normal way, and probably better as I can see what I’m doing.

The bag isn’t changed every time I go to the loo, it opens at the bottom and is emptied…simple.

And it never stops, I can’t switch it off. Which is why I’m still sometimes caught off guard and have to run like mad to find the nearest loo.

Why are you drinking WINE and eating sweets if you are so ill?

Well deserved glass of wine

Well why not? And to be honest after my operation I’ve never been so well, and can do the majority of things, well, within reason.

I do get a little bit angry when people try to make out that I shouldn’t be eating something – while stuffing their own face with crisps, cake, chips and chocolate. Just let me get on with it, I don’t tell you what to eat.

I’m lactose intolerant – so i don’t eat cheese, cake, chocolate, and a whole array of yummy things unless I get my hands on dairy free ones – I also don’t eat spicy food, and rarely eat fast food.

I mostly live off spinach, eggs, potatoes, pasta and loads of salad….which my stoma doesn’t really enjoy but I eat anyway.

Also, it’s a fact that sweets help me and marshmallows and jelly babies are actually listed as medication for when I have bad output days with my stoma. Yes, I often stuff my face with them despite that – but I go to the gym at least four times a week and I walk everywhere.

The fact is that you only have one life. For years I had to analyse every little thing I ate, and had people constantly watching me. I still do to an extent, and it drives me mad as I am a fitness fanatic, and I often have people who don’t look after themselves at all having a go at me…

Are you anorexic, why aren’t you eating anything?

Like many women I focus a little bit too much on my weight. I’ve previously spoken about my feelings about it and the problems of my ever shifting size while living with IBD.

The picture of me above was when I was painfully thin after my first op.

But I’m not anorexic, and it hurts when people say things about my weight, comment on my eating habits, or asked me why I wasn’t eating when I was scared of putting things into my body because I was in so much pain.

You can read the full post here.

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

IBD, it’s just a toilet issue isn’t it?

No, while one of the symptoms can be going to the toilet a lot, it can be the other symptoms which can be the most crippling.

The illness goes way beyond the toilet stall, and everyone who has IBD tends to be different.

My case before my surgery was extreame, with severe blood loss, non stop toilet visits, horrendous pain, crippling fatigue, weight loss, and even at one point my hair started coming out.

I also now have bad joint pain, and osteophrosis from years of steriod treatment.

Anyway, enough with this depressing stuff…Happy World IBD Day

To end this I want to say, IBD makes me different on the inside from most people as I have an illness which makes my body do horrible and painful things.

I also don’t have a large bowel and my bum is sewn up.

But I am a normal person, who can do pretty much everything everyone else can. I just need some medication and a bit of TLC to help me stay healthy, and to look after my stoma.

Happy World IBD day. Let’s keep sharing awareness together.

 

 

 

 

 

 

 

 

Why I’m proud of my surgery scar a lasting reminder of my battle with IBD

There are a lot of things I would change about myself if I had the chance.

My wonky (some might say quirky) teeth, flyaway eyebrows and weird hairline would be top of my list.

But I wouldn’t get rid of my scars or my ostomy.

Winnie (my stoma) certainly picks her moments to have strops – the most noteworthy was bursting into farts as I interviewed David Cameron for the first time a few weeks ago.

The Prime Minister may have chosen not to comment or simply didn’t hear her popping away – but I had to struggle on with my hand desperately pressing my abdomen as she made frankly hilarious noises which would normally have had me laughing and apologising.

But despite this I wouldn’t get rid of her, mostly because I can’t.

My ostomy and my scars tell a story; from the slit in my nose marking the place the feeding tube went in as a premature baby, to the pits on my legs showing an ugly reminder of a tough time when I thought I would never show my legs again.

I often thought before my ostomy surgery that I would hate my surgery scar, that it would turn me into something repulsive.

I remember seeing it for the first time after my operation, oozing and sore, and like a war wound bound up with metal and wire – and I couldn’t cope.

But now that scar that snakes down past my belly button to my pelvis seems almost beautiful to me – it reminds me of a journey completed and a battle won.

I’ve thought about getting some sort of tattoo around my scar (not the one on my nose), not to hide it but to make it prettier, but for now I’ve decided to let it be.

So this summer I’m determined to finally get my belly out on the beach for the first time and I’m going to have a good look for a bikini to show off my figure, ostomy bag, scar and all.

And as it was World IBD day this week I thought there would be no harm in letting you all see how I’m getting on with a few selfies of how me, my scar and Winnie are looking these days.

My ostomy may be looking a little red and sore, she might fart at the most stupid moments, but two years on from my first lot of surgery I wouldn’t get rid of her for the world.

She is the most significant thing that ever happened to me – and that’s a fact.

Walking in a monkey onsie for Crohn’s & Colitis #no93

Oh dear! Yes your eyes haven’t gone wonky, that’s me walking through the streets of York dressed in a fluffy pink onsie, accompanied by a Teenage Mutant Ninja Turtle and a life-sized ladybug – oh, and my Dad, dressed as himself going to bed!

It might look like a bizarre Flint family outing (minus my sister who couldn’t make it) but we are actually walking for a special cause. On Sunday we joined more than 300 people to traipse around the city in the sweltering sunshine to raise awareness and much-needed funds for Crohn’s and Colitis UK.

It was a boiling hot day as we walked 8KM along the banks of the river, and it didn’t take us long to be sweating heavily and deeply regretting the onsies. My kids-size monkey onsie may have been a cheap Primark bargain, but was obviously designed for winter, with thick fluffy lining totally unsuitable for the baking hot sunshine. It was the farthest I’ve walked since my recent completion protectomy operation and I was flagging by 5KM, forced to unzip my top and walk with my smiling monkey hood grinning out from my backside like a weird bum face. But I did feel proud when I’d finished. Even though I’ve started running again, walking 8KM was a massive achievement especially with the heat and added excitement of dressing up. I was exhausted afterwards. My ostomy output went funny due to dehydration, which was obviously something only dairy free ice cream could solve!!!

We may have looked odd, exhausted and far too hot, but boy did we have fun. It was amazing to see so many people giving up their time to raise awareness for an illness which has totally destroyed and transformed my life. It was hard to tell which of the participants were ill and which were friends, family, doctors, health professionals and general supporters, which I guess just shows how invisible an illness IBD is, and, thus, how hard it is for non-sufferers to understand.

And we did come second in the fancy dress competition – so I guess almost passing out was worthwhile.

If you are reading this for the first time and don’t understand IBD (Crohn’s and Colitis) please visit Crohns&ColitisUK to learn more about the disease and how you can help.