Showing posts with label colostomy. Show all posts
Showing posts with label colostomy. 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.

Sunday, 30 October 2011

Pumpkin Soup

It's been a weird old week.  I've been a bit off my game recently - I don't know if I'm just super tired, of if the pain and painkillers are getting to me.  My brain is behaving like an old car engine on a cold morning.  On Monday I confused Maidstone with Maidenhead and things went downhill from there...

Happily, however, the world of low-residue eating has proved itself to be less dull than I was expecting.  Risottos, soups and stews are perfect, assuming that the vegetables are finely chopped. And since it's almost Hallowe'en, I decided to have a go at pumpkin soup.  

Pumpkin and squash are brilliant sources of vitamin A (something Crohn's Disease can cause deficiency in) and are lovely soluble fibre so are ideal for the ol' low residue diet.  Most importantly, they taste great!

Pumpkin Soup
This easy-peasy soup is perfect for using up the scoopings from your Hallowe'en pumpkin.
1 medium pumpkin (or any squash), de-seeded, peeled and cut into chunks
1 small onion, finely chopped
1tbsp garam masala
1tbsp rapeseed oil
500ml vegetable stock
150ml natural yogurt
salt, to taste.

  • Heat the oil in a saucepan and add the onion and pumpkin.  Saute until the onion is soft, add the garam masala and fry for a further minute.
  • Pour in the stock and bring to the boil. Reduce the heat and simmer for about 20 minutes, until the pumpkin is tender.
  • Transfer the soup to a blender and blend until smooth. 
  • Return to the pan and reheat - add salt if needed.
  • Serve with a swirl of yogurt. 
(If you haven't carved your pumpkin you could always serve your soup in the hollowed out shell.)
Happy Hallowe'en!

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Saturday, 22 October 2011

Keeping You Posted

It has been a while!

What is it, 5, 6 weeks?  

Let me fill you in.

I met my surgeon last week.  Few stories end well when they begin with that sentence, but read on - you might be surprised.  I had assumed that the process of refashioning a colostomy would be a simple, key-hole surgery, maybe even with local anesthetic. Apparently not.  It turns out that the history of my Crohn's Disease means that I will need general anesthetic, be cut all the way up to the sternum, and it's quite likely that I will undergo a total colectomy (removal of large intestine) and formation of ileostomy.  My colon is stuck to my abdomen wall and if the surgeon leaves any on the disease colon inside me, it could get stuck again (to the abdomen wall, or any internal organs in the vicinity), so after a colonoscopy to see the extent of the damage I will be placed on the (3 month) waiting list.

In the meantime I have to get on with life along with pain, bloating and vomiting (at best), and bowel obstructions (at worst).  Every few day the narrowed parts of my digestive system can't cope and gets blocked, cue on-your-knees-cry-out pain, queasiness akin to being on a North Sea trawler in a storm, and when are you due? levels of distension. 

You're waiting for the good bit, right?  Well, I am feeling very positive about all of this!  Of course, I had a bit of a cry about the whole thing initially, but in general I'm convinced that this is the right thing.  Back in 2008, I went under anesthetic without a clear idea of what I'd be waking up to.  I anticipated all eventualities and an ileostomy was one of them.  I feel like I  have already prepared myself for this.  Sounds a bit weird, doesn't it?  

 I can see the light at the end of this particular tunnel and that's wonderfully empowering.



One of the down-sides is the need for a diet that is low in insoluble fibre (no nuts, seeds, skins, wholegrains, etc) which leads to rather texture-less dining for the foreseeable future.  On the up-side, I love making soups and stews - ideal low-residue eating!  I'll keep you posted with my favourite recipes.

Wednesday, 7 September 2011

Beetroot Fritters

My Husband often refers to me as "broken".  I suppose I am; Crohn's Disease, Coeliac Disease, Osteoporosis, B12 deficiency, chronic anaemia, and a  colostomy (now with stenosis), is probably enough to justify the term.  Two major abdominal surgeries, and a handful of day surgeries, have left their share of physical scars.  The emotional scars can be harder to deal with.  Most days, I'm fine, but sometimes I wonder "why me?"  I have been quite contemplative since I was told that I will require surgery for stenosis (this is a food blog, so I won't turn your stomach with too much detail.  Basically, my colostomy has started to heal over.  Let's leave it there, shall we?!).  Finally, I was well, I was healthy, then this happened.  When will I get the chance to really live my life to the full?  I felt beaten.  That was, until Shauna tweeted a link to this blog post by David Anderson.  

My brokenness makes me the person I am today.  On the night of my 30th birthday party I was fretting about the fact that I hadn't done half the things I wanted to do in my twenties, when my Mum reminded me that I had done something much more.  I had survived Crohn's Disease.  I am stronger and more determined because of everything I have encountered.  I enjoy time with my Husband, family, and good friends whenever I can, because I know that they are what's important.  I cook because it fills me with joy.  I write because I am inspired.

I am filling my cracks with gold.

And purple.  The theme for the Gluten-Free Ratio Rally this month is fritters and doughnuts.  Pop over to host, Meg, at Gluten-Free Boulangerie to see the round-up.   I have redicovered beetroot this year.  I am enchanted by it's sweet earthiness, and I love the purple that colours everything in the dish!

I must admit, I have never made a fritter before (and I don't know if bhajis and pakoras count?) so I opted to give them a go.  Much to the Husband's disappointment, why would a person pass up the chance to eat doughnuts?!  The ratio for fritters is 2:2:1, 2 parts flour:2 parts liquid:1 part egg.

Beetroot and Apple Fritters (makes about 10 fritters)


60g millet flour
60g cornflour
120g natural yogurt
1 large egg
1/4 tsp baking powder
1 green apple, peeled and grated
1 beetroot, cooked, peeled and grated
1 tsp caraway seeds
2 cups light oil

  • Beat the egg in large bowl and mix with the yogurt.  Sieve the flours and baking powder into the bowl and combine well.
  • Stir in the beetroot, apple and caraway seeds.
  • In a frying pan, heat the oil.  Add heaped dessert spoons of the mixture into the hot oil and fry for about 1 minute. Don't overcrowd the pan or the temperature of the oil will drop.
  • Turn the fritters and cook for a further minute.
  • Transfer the fritters to a plate lined with kitchen paper to drain any excess oil.
I should admit that I initially intended these to be savoury fritters but the flavours of the beetroot and apple convinced me that they were better suited as sweet fritters!  These are delicious served warm with cream and a drizzle of honey.

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Monday, 30 March 2009

Life Lessons

You learn something new every day... Or so the saying goes. Today has been an above average day.

Lesson #1 - Maize pasta will not behave like rice pasta in soup. It will go mad, break up and stick to the bottom of the pan. My soup now has the consistency of set jelly and has turned yellow. Must send an order for more Mrs Leepers rice alphabets to the in-laws in America.

Lesson #2 (not for the feint-hearted) - If you are very tired and wearing a pediatric colostomy bag in bed, be prepared for 3am shenanigans. The bag filled up, came off and my stoma kept on going. Putting my hand in it was the first I knew about it. After my bleary-eyed clean up operation, I had to remove my still slumbering husband from the bed, change the sheets, replace him, then find some warm pyjamas (the heating having long switched off) before crawling into bed to shiver myself back to sleep. Not the best start to a day!

Lesson #3 - If you are female and filling up your car radiator in a public car park, everyone will have an opinion on what the problem is. Even if you ALREADY KNOW what the problem is.

I accept that these lesson will not change the world. But, if even one person reading this thinks twice about putting maize pasta in turkey noodle soup, then my work is done.

Sunday, 22 March 2009

Jade Goody

I never thought I would ever blog about Jade Goody, but here we are. When I read today about her death, I was struck by her age, 27. That is the same age as me, it shocked me. She has crammed a whole lot into that life. I remember watching her on Big Brother, it was the summer I (and she) turned 21, I honestly can't think of any other Big Brother contestant who has made such a big impact following their time "in the house". Over the last 7 years she became, love her or hate her, a celebrity, constantly in our consciousness and our tabloids. I hope her two young children are allowed to remember her media triumphs and feel proud of what she achieved.

Something she was quoted as saying grabbed me;
"The hard truth is I'd be dead if they hadn't cleared the blockage in my bowel," she revealed after the op. "The tumour made me constipated and caused my body to start bloating. My biggest fear was that I would have to have a colostomy bag. I've dealt with losing my hair - but a poo bag, that really would have been the final indignity for a woman. But, like everything else, I've coped because I have to. Where there's life there's hope. That is what I'm clinging on to."
I'm sure that Jade was speaking in a "silver lining" kind of context, but I want anyone reading her comments to know that a colostomy bag is not an indignity. In any situation.

I have met women will colostomy bags who have them following bowel cancer, mine was due to bowel obstruction from Crohn's Disease. In all cases these were life saving procedures and the dignity with which many of these women have overcome their illness is a lesson to me.

I have already encountered this attitude - in hospital, while recovering from my colostomy operation. A lady was brought into the ward (which contained me and another lady also with colostomy), she'd had surgery to some part of her intestines. She was complaining loudly to her visitors about how uncomfortable she was and how awful the surgery had been, then she said "at least I didn't have to get a bag, that really would have been impossible to live with". I mused about telling her that it wasn't that bad, actually, but I put her comments down to morphine and forgave her!

No matter how prominent, or loud, the person with that opinion is, I can honestly say that This "poo bag" has given me a life I'd stopped believing possible.

Monday, 29 December 2008

Stanley and the Bag

I have a new lease of life! Ok, so it hurts to move and I'm exhausted, but I really do feel like a new person. Actually, I feel like a version of me that I thought was lost years ago in amongst all the pain, discomfort and loss of appetite.

After weeks of pain and bowel obstruction, I was admitted into Wycombe General Hospital on 17th December and underwent Colostomy surgery on the 18th. I have now been home 5 days and all the rubbishness of wooziness and epidurals and IV fluids seem like a distant memory. Through the general post-op fatigues and aches I can feel what life ahead of me will be like. No more hideous pain every time I go to the bathroom. I can eat pretty much what I like - no longer shall foodstuffs be omitted because they're "too high residue". I will put on weight, I will have energy and a social life and a pay check without the acronym "OSP" on it! Yay! My optimism frightens me, but there really is a light at the end of the tunnel.

I have named my stoma, Stanley. Stan the stoma. It seems friendlier that way. My Husband has named it Donald. As in Duck, thanks to the noises it makes from time to time. I prefer Stan. In public, instead of saying to my Husband - "I'm off to change my Colostomy bag" I can say, I'm off to deal with Stanley", much more discrete, I think. So far, only Husband and two close friends have been privy to Stanley's musical aspirations, I'm a little nervous about more public situations, but I suppose I'll deal with them as they happen.

My favourite thing about this whole Colostomy business is that my appetite is back, with a vengeance! The stoma nurse told me to eat as normal when I got home, I have happily followed her advice! Last night I even went out for dinner, to Wagamamas in Wycombe. I was a bit worried about the whole socialising thing with Stanley, but it was absolutely fine. It make a few noises throughout the evening, but the ambient noise of the restaurant was louder, so no one noticed! I am excited about eating again, and about cooking. Possibly Boxing Day was not the right time to try out my rediscovered passion for cooking, as I was barely 48hours from a hospital ward and the simple act of making stock was enough to wear me out. As my energy levels slowly creep up, however, I am able to do more and more in the kitchen. I made, and devoured, a pot of chicken noodle soup from Christmas leftovers (we had chicken for Christmas Dinner, there was only 2 of us and Christmas Eve it not the best time to try to buy turkey...), the traditional Boxing Day turkey (chicken) curry, and fabulous gluten-free Yorkshire pudding. I am anticipating a weekend of making canapes for a small get-together of friends from church on Sunday (no evening service, lots of 18-30s at loose ends and students due to return to uni soon). I am planning mini toad-in-the-hole, five-spice turkey and water chestnuts wrapped in pak choi, mini crab cakes, corn tortillas with Mexican spiced chicken and salsa, mushroom duxelle on polenta crisps and potato cakes with smoked salmon and creme fraiche. If they are successful I will post recipes here next week.

Oh, and seem to have a huge amount of broccoli in my fridge, any ideas about what to do with that?