Showing posts with label Ileostomy. Show all posts
Showing posts with label Ileostomy. Show all posts

Monday, 7 July 2014

Get Your Belly Out!

When Bethany Townsend shared her story on the Crohn's and Colitis UK Facebook page, along with some holiday photos, I'm sure she didn't expect this response. The photos have been seen by more than 12 million people worldwide and her story has been picked up by news outlets everywhere. She shared her story in response to the brilliant Get Your Belly Out




Sahara, Victoria, Gem and Lorna launched the #GetYourBellyOut Facebook and Twitter campaign in March to raise awareness of IBD (that's Inflammatory Bowel Disease, if you didn't know) and have raised over £8500 for Crohn's and Colitis UK in the process. Their aim was simple, but #GetYourBellyOut has become so much more that. Through their Twitter account and Facebook page, they are supporting IBD sufferers across the world and inspiring them to feel confident about their body in the face of an illness that so often saps all self-esteem. They're raising awareness about IBD through social media and encouraging others to share their stories to further the cause. From such humble beginnings to worldwide recognition in just four months is something rather special!

Anything that helps unite the IBD community is awesome in my book (see also Crohn's Zone) and I was delighted to see how many people shared their own belly pictures in time for World IBD Day on 19th May. The four girls behind Get Your Belly Out are an inspiration.

Before The Get Your Belly Out girls started their campaign, there was a limited number of people willing to share their stomachs with the world. A quick scroll through the photos shared with Crohn's and Colitis UK shows that pre-March 2014, only a few brave souls were willing to bare their scars, ostomies and bags. Now, both CCUK and Get Your Belly Out can hardly keep up with the volume of photos! Bethany was one of those people who shared.



The Daily Mail's headline yesterday suggested that "score of Crohn's sufferers ... post(ed) bikini selfies inspired by" Bethany. This is not the case. In fact, the photos of other people used in this article (in some cases, without permission) came from the CCUK and Get Your Belly Out Facebook pages and some were shared well before Bethany Townsend shared hers. It's also worth noting that some of those sharing have Ulcerative Colitis, not Crohn's.

If I'm completely honest, I'm a little saddened (but not surprised) that in spite of thousands of IBD sufferers sharing their photos and stories, the media didn't pick up the story until an aspiring model shared hers. Don't get me wrong, the publicity is brilliant (when it's factually correct) and if it raises awareness of IBD, great! It's just that Crohn's Disease and Ulcerative Colitis wreak havoc on your body and your confidence, and I'm not sure that promoting only those people with model-good-looks in the press is helpful. People with IBD come in all shapes and sizes, like the rest of the population, and it's just as brave and equally inspirational when they share their photos with the world. Extreme weight loss during a flare or puffy Prednisolone moon-face can make it a challenge to simply get in front of a camera and allow your image to be captured - that's why I prefer to stay behind the lens.

I did share my own belly photo for World IBD Day. Ok, I was wearing my Muppets pyjamas and not a bikini, the perspective is off and you can't even see my face, but even so, it was one of the hardest photographs to take and share. As I clicked the 'Tweet' button, my palms were sweating and I wanted to delete it as soon as it appeared on my timeline. I needn't have worried, though. The response was wonderful; people were supportive and encouraging and I realised that I'd been worried about nothing. Actually, now I'll show my scars or my bag to anyone who asks. I'm not ashamed of my ileostomy and I know that the more I talk about it, the more normal it becomes. The reactions aren't always positive and I do get the odd hurtful comment, but some people will always fear what's different.

Is Bethany Townsend brave, beautiful and inspirational? Yes! And so are all the others who make the effort to raise awareness about Crohn's and Colitis.



To join in the campaign and help raise awareness of IBD, all you have to do is upload a picture of your belly to your chosen social media accounts using the hashtag #GetYourBellyOut. If you're sharing on Facebook, remember to change that post's visibility to 'Public" so Get Your Belly Out Can find you! If you'd like to make a donation when you share your belly picture, text IBDA99 and your donation amount (e.g. - IBDA99 £3) to 70070 (UK mobiles only) or go to the JustGiving page. All donations go to Crohn's and Colitis UK.

Saturday, 19 October 2013

Constant Cravings

I should warn you, this is a post about pregnancy. I tell you now so that you can move on to a different site, should this kind of thing not interest you. I promise that normal, gluten free food-y, service will be resumed very soon. In fact, scroll to the end of the post for a rather lovely stuffed onion recipe!

You might have noticed that I've not been blogging much over the past four months. June and July passed in a haze of long naps, spicy pickled onions, and Nutella, and before I knew it, it was August! September was unfortunately dominated by a Crohn's related infection that resulted in a trip to hospital, but all is well now. Our family and friends know our news and I thought I'd share it with you, too. After all, many of you have been on the journey to good health with me.

I'm 22 weeks pregnant. After three major surgeries, the removal of my large intestine and a decent chunk of small intestine, and nearly two decades of inflammation and ulceration in my abdomen, I wasn't even sure that was a possibility. Before I was diagnosed Coeliac, I lost so much weight that my periods stopped and didn't return for four years. One surgeon told me that Crohn's would have reduced my chances of conceiving, I saw gynaecologists who said, "maybe, maybe not" while all around me friend after friend popped out babies of their own. Advice ranged from, "just relax and it'll happen" to "I can give you the details of a good fertility clinic," but nothing helped.

I was starting to feel an affinity with Tian Tian, the panda at Edinburgh Zoo as certain family members became increasingly impatient over when (and if) a baby would ever arrive.

The funny thing is, that in spite of really quite wanting a baby, I was more concerned about being healthy enough to cope with a pregnancy and to look after myself and the resulting sprog afterwards. Fortunately, my Crohn's is in remission and, apart from various vitamin supplements and injections, I'm medication free. In fact, the timing couldn't be better, I've been off Humira for a year (it takes six months to clear your system and isn't recommended for pregnancy), my colectomy scars have had eighteen months to heal and I have the most energy I've had in a decade. Of course, that's not to say that I believe pregnancy will be easy, there are always risks. As scar tissue stretches and internal adhesions tear with this growing wee one, I've had all kinds of pain. I know that bowel obstructions and problems with the stoma are common for women like me, plus, there's the issue of not necessarily absorbing as many nutrients and water as people with entire, and fully functioning, digestive systems. 

I used to feel deep disappointment when pregnant friends confessed to not really having any interesting cravings, often demanding, "go home and eat a box of crayons for me!" One friend had cravings for tomato juice, while another confessed to eating bucketloads of daal. I've had rather unexpected cravings for onions. It doesn't matter what kind of onion, be it raw, pickled, roasted, fried or in soup, I'll eat it in vast quantities! This explains why, when the waitress at a restaurant told me that their soup of the day - French onion soup - wasn't gluten free, I got a bit tearful at the thought of missing out on onions. It turns out that onions are high in vitamin C, Folate, and Potassium so perhaps cravings aren't as strange as I first imagined.



Stuffed Onions
The memory of onion-soup-gate has me craving onions once again so here's an inside-out sage and onion stuffing recipe that's a brilliant side dish for your roast.

2 tsp rapeseed oil
50g stale gluten free bread (a slightly past-it Udi's bagel is particularly good here)
25g pancetta, cut into lardons
a few sage leaves, chopped
4 large-ish onions


  • Peel the onions and slice off the top and the root end off, leaving enough to hold the onion layers together. Drizzle with oil, season and pop into the oven at 180°C for 30 minutes.
  • Cut the stale bread into ½ cm cubes and put in a bowl.
  • Add the pancetta into lardons to the bowl with the chopped sage, salt and pepper. Stir together.
  • When the onions are soft, but still holding their shape, remove from the oven and scoop the middles out, leaving just the outer 2-3 layers.
  • Chop half of the inner parts of the onion and stir into the rest of the stuffing mix.
  • Fill the onion shells with stuffing, pack it quite tightly, and return to the oven for a further 30-40 minutes.


Thursday, 7 February 2013

A Year On

Exactly one year ago yesterday, I had my large intestine removed and an ileostomy formed. Most of this time last year is a blur of morphine induced nonsense (apologies to those who came to visit me only for me to fall asleep mid-sentence) and, if I'm honest, so is the year that's followed. It seemed wrong to let this moment pass by without marking it in some way, but how? I could bake a cake - Happy birthday ileostomy! - or, light a candle - rest in peace, colon - but neither feels quite right. Instead of commemorating the surgery, I'm focussing on its legacy and celebrating the renewed life it's given me.

I've gone from feeling weak and in pain to getting stronger, physically and mentally, every day. As someone said to me recently, "Having bits cut out obviously agrees with you." It does! 

A permanent stoma is a massive, life changing thing and it affects every single part of your life. It's scary, and hard to imagine how it will feel, how you will feel, when it happens. I can understand why so many people think it's a step they'd never take, but for me it was the only step. It's not always easy to get my head around the physical impact of recovering from the surgery - it took far longer than I expected, but then I'm impatient - and occasionally it's a pain in the arse (although not actually in the... you know where I'm going with this), but I wouldn't change it. Yes, I get dehydrated easily, I'm effectively still recuperating after getting Norovirus in December and my bikini modelling career is over before it began, but I don't mind when the bigger picture is so encouraging. 

The old me!

Thanks to my parents, the Husband and friends (in particular, Kate, Sara, Laura and Paul), I'm facing the next year with hope. Their support through the rough times has given me the strength to keep going when all I wanted to do was stamp my feet and shout "it's not fair!" Thank you for helping me smile when I wasn't sure I could. I can't promise to stop having mini-tantrums now and again, but knowing you're standing by to pick me up off the floor is what gets me through the day.

Sunday, 12 February 2012

On the Right Side

In the words of Genie from Aladdin:
"I'm history! No, I'm mythology! Nah, I don't care what I am, I'm FREE!"
I'm out of hospital, I'm free!  I am delighted to be eating my mum's cooking and sleeping in my own bed!  I can't tell you how much of a relief that is.

Don't get me wrong, I am full of gratitude for all the surgeons, anaesthetists, nurses, physiotherapists and every other medical professional that brought me to this side of the surgery.  It's just that hospital is not home.  Stating the obvious, I know, but hospitals are places where we go to be mended, the real healing begins when you get back to your family and familiar surroundings.

This operation, unlike any others I have had, involved a rather unpleasant reaction to the anaesthetic and I spent Monday night shaking, vomiting and generally feeling very horrible. (Apologies again to the Husband and friend who were on the receiving end of that!) I have had a fair few general anaesthetics in my time and that was the first to cause that kind of experience, certainly not fun but over by the following morning and, given my condition, probably significantly worse for my loved ones than for me. The next challenge was the removal of the epidural.  Sadly, with an epidural the real benefit is only realised on removal, when the pain it has been masking becomes quite real!  It took a while to settle on a method of pain relief that was both effective and that didn't cause me to fall asleep at the end of each sentence... Once that was dealt with, however, I started to feel more like me again and I just wanted to go home.

As anyone who has stayed in hospital knows, the food is a hot topic of conversation!  As the daughter of an ex-dining room manager of a hospital, I know that the food on the wards often gets unfair press.  I was very impressed by the way the staff worked hard to ensure there was always a gluten free option available for me, even though some days I couldn't even look at food.  I was most excited by gluten free sandwiches some days!
Egg and cheese (gluten free) sandwiches!
I honestly believe that the hospital food issue is a no-win area.  After all, most of the people eating the food are quite ill (and even Michelin starred food would turn their stomachs) and there will always be limits to what hospital staff can produce under the time and money pressures that they already face.  I am grateful for the efforts made by all to accommodate my dietary requirements and I'm hugely appreciative for all that the NHS has given me.

For now, I am quite sore, tired, and the various incisions are beginning to itch, but I don't care!  I am home.


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