Monthly Archives: June 2014

Why I love my stoma……

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Ok so the truth is I don’t always love it but most of the time I do. It’s a hard thing to believe, after all who in their right mind could love something that is essentially a bag of poo stuck to their belly? But for me, like a lot of other people it saved my life.

For some people, a stoma comes as a shock, it is the result of a freak accident, a sudden diagnosis of IBD or perhaps cancer. Sometimes (and not in all cases) the stoma is unwanted and incredibly difficult to come to terms with. But I consider myself lucky. My stoma ended years of suffering, illness, fatigue, hospital admissions, strong medications and embarrassing accidents to name a few. Nobody, no matter how sick, would wish or want to have a stoma, wearing a bag is the last chance saloon, something that perhaps you see as a possibility in the future but not something inevitable that will come at you in your prime. The truth is, we never really know what is round the corner or what fate awaits us.

This time 3 years ago, I was very sick, you wouldn’t know as I still worked full time in a stressful and full on job, had a social life and to the outside seemed normal. What people didn’t realize was that I was consumed with a mouth constantly full of ulcers, it hurt to eat even ice cream, I couldn’t even contemplate taking on the day unless I was stuffed with as many painkillers as I could take and just getting through the day would muster every ounce of strength I had. I would plaster a smile on my face, wear my high heels and then cry in secret when I took a painful bite of one of the only things I could bear to eat (banana),only for seconds to pass before an emergency dash to the toilet to expel what little was left inside me. I was constantly starving, I was so hungry I would cry and yet just the smallest morsel would send me into spasms of pain and hours on the toilet. But even then, the thought of a stoma terrified me, in fact I didn’t really know anything about the ‘bag’ (3 years ago there wasn’t the positive publicity we now see) I assumed it would be like a hospital drip where you had to carry it around with you on a pole on wheels!! So when I was told I would be receiving infliximab by the Gastro Doc I was over the moon. Infliximab is so strong and powerful with so many potential side effects that you have to have tests for TB, Hepatitis and a myriad of potential underlying diseases before it will be administered. I was told there would be an 80% chance of not needing surgery. So when days later I was told surgery was my only option I was distraught. How could I wear a bag, it would be awful.

However, by the time the surgeons came to see me I was in so much agony I distinctly remember saying to them “I don’t care just get the f***er out”! Eventually I awoke from Emergency surgery with two bags (one was a mucous fistula, more of that in later posts) but instantly felt better. I was in agony from the op but could tell that my ravaged, poisoned intestine had gone! It was days before I was allowed to eat properly again, which was torture but when I could it was absolute heaven!

So why do I love my stoma?

1) I can eat anything I want without fear of mad loo dashes, except sweetcorn, it’s the devil for me, I love it but it’s a small sacrifice (missing the large intestine means certain foods can be more difficult to digest and can cause issues but it’s all individual).

2) I can exercise again – ok not so much of a love as I don’t really like exercise but there’s no excuses and the sky’s limit if I want!

3) I can wear white and whatever else I like (yes with the aid of some amazing albeit expensive knickers!) but I can still wear those things. I mean who would wear white if the fear of sh*****g yourself was always at the back of your mind?!

4) I can have a relationship, yes you can date with a stoma, it doesn’t seem to put people off. But the best thing is no longer (as happened to me) having a date over for dinner, excusing yourself to use the loo only appearing half hour later, pale and weary! Emptying the bag takes seconds so no embarrassing ‘you’ve been a while’ moments.

5) I don’t have to find a nice toilet to poo in! Obviously nice toilets are a bonus, but it’s not like having a poo, where (especially us ladies) would rather do in private and comfort, but a practical task, that can be done almost anywhere. Oh, and no more waiting until I’m home to poo, nope it’s on the go now!

6) Travelling – I can travel, on planes, trains and automobiles! No worries of being on a plane, feeling an urge to go and yet seeing a dreaded queue. As yet, I have not had to empty on a train toilet and I hope I don’t have to, but I still could, no fear about being stuck in a god-awful train toilet for ages and risk missing my stop! Before travelling I make sure I empty, eat light before hand, take a couple of Imodium and away I go!

7) I am free of medication, fatigue and pain which is just amazing. Ok, so occasionally I don’t chew properly or I eat something that’s difficult to digest and I may get a ‘blockage’ which is painful but manageable yet it’s still better than before.

There are several more reasons but I realize I’ve chatted enough so maybe I’ll leave you wanting more! 😉

But as I said, I am lucky, suffering for so long made me appreciate my stoma. But if anyone is facing a similar situation, it isn’t all bad and you can have fun with it (yep you can, but more on that later!)

So I love my stoma, really for the freedom it gave me and the fact I can now enjoy life – which is really the important thing 🙂

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Ostomy’s go viral – let’s keep it going

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Yesterday was a big day for Ostomates and IBD’ers which is great news and all thanks to a couple of lovely young women. BBC Breakfast did an interview with Rachel Flint (http://adventuresofthebaglady.wordpress.com/) about life with Crohn’s and the fatigue it causes, Rachel spoke openly about her Stoma and how it changed her life for the better, a very positive view on something lots of people see as negative. Unfortunately, the interview was marred by a consultant inferring that Crohn’s is caused by a poor diet (but more of that later). This ‘surprise’ element of the interview was handled very well by Rachel and David from Crohn’s and Colitis Uk http://www.crohnsandcolitis.org.uk/ However, overall Rachel gave a positive view of living with a stoma and at least IBD was brought to the forefront and about time. Rachel’s story and her feedback on the diet issue went viral with so many shares and likes and others offering their experience.

The second positive story of the day was a young woman called Vicky who posted a picture of herself sunbathing on the beach in a bikini with her ostomy bag on full display – good for her and to date the picture has generated over 200,000 likes and goodness knows how many shares but it is more good news for Ostomates. And well done to brave Vicky who also happens to have an amazing body! So all in all a positive day of showing Stoma’s in a positive light and maybe giving hope to others who may be facing life with a stoma for whatever reason.

It has also raised awareness of IBD (Inflammatory Bowel Disease) and hopefully the general public are now more aware of the effects of these types of diseases. Unfortunately I feel that Ulcerative Colitis has become the poor relation, it doesn’t get as much press as Crohn’s and seems to get brushed under the carpet at times. Of course, with Crohn’s getting press other IBD’s will naturally also get an upsurge in awareness but it is a shame that UC isn’t discussed as much as Crohn’s – but still, it’s all baby steps and it’s still good publicity. The difference between Crohn’s and Ulcerative Colitis is the amount of digestive tract that it affects. UC affects the large intestine (right down to the rectum and anus) whereas Crohn’s affects the whole digestive tract (throat, mouth, stomach, small and large intestine etc.). However, both diseases are debilitating, excruciating and embarrassing.

I mentioned the inference that diet could cause IBD and I would just like to say (as many others have) that there is absolutely no scientific evidence to back this up. Many people with IBD have led a healthy life, I grew up on homemade dinners, we didn’t have takeaways and I was an active child. I had symptoms from the age of 16 and yet it took 10 years for me to get a diagnosis, by this point my intestines were so ravaged that the disease was only going to get worse. The problem in my opinion, is not diet related but lack of early diagnosis. Perhaps if doctors would take our symptoms seriously and not send us away with a diagnosis of piles or Irritable Bowel Syndrome we may get help sooner. If my diagnosis was made earlier on then I would have got medication sooner and maybe my large intestine would have stood a fighting chance and maybe, just maybe I wouldn’t be living with a permanent ostomy. This does not make me bitter, I am still glad I have my Stoma, it has changed my life for the better and I am no longer chained to a toilet. But for a medical professional to insinuate we have brought these diseases on ourselves with a poor diet, is quite frankly insulting. Of course diet affects us and our bodies, we should have a healthy balanced diet, with plenty of fresh fruit and veg and the treats limited but we shouldn’t be made to feel that the odd trip to a fast food restaurant caused us to have a debilitating condition. IBD is an Auto-Immune Disorder, this means the body turns on itself and attacks healthy tissue, there is yet to be more research done to know what does cause it.

So all in all, despite the ‘diet’ issue, yesterday was a great day for people with IBD and stomas and I want to keep that going, let’s share the blogs, the pictures and the posts. Let’s quell the idea that stomas are for old people (I used to think this too, I used to joke about having a bag when I was older because of my UC) and let’s give hope to people facing having to have one, it’s not just people with IBD but people with Bowel Cancer may face a stoma too.

And you know what, you can wear whatever the hell you like, as those who follow me and read my blog know, I have never been shy about sharing the fact I wear a bag and often like to show people! The only reason I don’t share so many bikini pics is not because I am ashamed of my bag but because I am no supermodel, I don’t have a rocking bod, and no matter how much I work out and eat well I still feel I could be a good half a stone lighter (and I certainly look nowhere near as good as the beautiful Vicky). But my body got me through a tough time and I try to be proud of it but when faced with pictures on an hourly basis of people with amazing bodies it is hard not to have a negative body image (ironic that it’s my figure that bothers me not the stoma!) But as I bleat on about raising awareness and being proud of what you have then I should practice what I preach and show you what I have! Sherrill Bikini