MIA! A Much Needed Round Up

I have officially been missing in action, I know!  The reason being that in September I went back to University full-time.  I have been studying part-time since getting the all clear, but it was taking too long so I decided to try and speed things up.  It has been awesome, but seriously busy – I’m sure it’s more than double the work!

But as Christmas is approaching I wanted to do a little round-up of what has been happening recently…

book coverGiveaway

As an early Christmas present to you / to make up for my absence I have decided to giveaway 3 signed copies of my book.  The giveaway is running on my Facebook and Twitter pages – all you have to do is like a share by Monday (I can sign them for a friend if you want to give it to someone) when I will be popping them in the post so you will hopefully have them for Christmas. (UK only I’m afraid)

My First Vlog for My Ostomy

I recently did my first vlog for My Ostomy which I loved!  So far it is getting great feedback, thank you to everyone who left kind comments with me and on My Ostomy.  It’s about surviving Christmas with an ostomy so if you are interested and haven’t watch it yet, you can check it out below.  I will certainly be doing more vlogs for My Ostomy next year and possibly on my own You Tube channel too – Ahhh… not sure I have enough to say but people keep asking me to do it, so watch this space and I will keep you informed.

In the mean time have a lovely time getting ready for Christmas try not to let it all stress you out and I promise not to leave it soooo long!

Merry Christmas

Nx

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Swishing Up Your Post-Op Wardrobe

Published on MyOstomy

I think one thing that most women can safely say they have in common when finding out they will need an ostomy, is a collective worry over how they are going to dress.  

I am a big fan of the #GetYourBellyOut campaign, but you don’t necessarily want my ostomy out on display all day, everyday.  Just like anyone without a colostomy bag, I think women generally like to keep their toilet habits, whatever they may be, under wraps… or at least under clothes.

Before having my ostomy surgery, I used to predominantly wear tops that were very tight around my stomach and low-slung hipster jeans. I then wore maternity wear when I was pregnant and for about 6 months after with the first baby, and, to be honest, I don’t think I ever truly got out of it after the second baby – but that’s another story.

Basically as far as I could see it, everything in my wardrobe was not going to work with an ostomy.  Excellent!

Read more…

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Bowel Cancer Awareness Month – Day 18 – Know Your Colostomy from your Ileostomy

Day 17 – My DictiOSTOMY!

This is something that is commonly confused, especially by the media, so this is basically it in my version of a dictionary – My DictiOSTOMY

STOMA

Stoma, literally translated, means ‘mouth’ or opening.  In this case referring to the opening from the colon coming through the abdomen.

COLOSTOMY

The more common, or at least the most referred too, is the colostomy.  A colostomy is formed by a stoma being made from the large intestine and brought through the abdomen wall.  A colostomy bag can then be attached to the skin to collect any waste.  A colostomy hangs on the persons left side.

ILEOSTOMY

An ileostomy is basically the same as a colostomy but it is made from the small intestine and the waste is generally still a liquid.  An ileostomy bag is then attached to the skin again to collect waste.  An ileostomy hangs on the persons right side.

OSTOMY

Keeping it general, it is referring to be both colostomy’s and ileostomy’s.

OSTOMATE

Someone who has an ostomy.

So there you have it, a little break down of the lingo so you know what we are all talking about! 🙂

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Bowel Cancer Awareness Month – Day 14 – When I Knew Something Was Wrong and My Symptoms

Day 14 – When I Knew Something Was Wrong and My Symptoms

I will always remember the look on the colonoscopy consultant’s face when he told me he had found a tumour he believed to be cancerous.  Pure shock.  The nurse looked like she was going to cry and my husband’s jaw was somewhere near the floor.  This was the beginning of me having cancer for them.  But for me, my cancer experience had started much earlier…

I had been getting rectal bleeding, that was very on and off, for around 8 years.  A classic sign of Bowel Cancer.  Over the years I had visited various GPs but they always said the same, that I was too young to have Bowel Cancer (a common misconception –  Remember Day 4?)  It was probably a small internal cut and if the bleeding went, there was nothing to worry about (another misconception – Remember Day 5?) The bleeding would stop, so that was that. In hindsight this could have probably been dealt with in the early stages if my initial concerns and symptoms had been taken seriously.

This is why I keep repeating over and over during Bowel Cancer Awareness Month (BCAM) that

the only way to truly know is to have a colonoscopy so get a referral from your GP!

The rectal bleeding now combined with discomfort when going to the toilet became intolerable during my second pregnancy in 2011.  I returned to the GP three times during that pregnancy, always with the same responses from the GP.  When my symptoms continued after my daughter was born, I quite literally fought for tests until my GP gave in and referred me for a colonoscopy.  The colonoscopy consultant found the tumour before he had even inserted the camera.

My daughter was only 6 weeks old and my son had just turned 2 years old.

Another symptom was extreme tiredness and fatigue but its only on reflection I am able to see that.  At the time I just put it down to life!  Being a new mum.  A lot going on.  Like I said, life.  Having said that I had said to my husband before “I swear there is something wrong with me, I know I have all these things going on but it can’t be normal to be this tired all the time!”  Now I know it is because my body was attempting to fight my cells turning on themselves.

I know it is harder to diagnose but do keep an eye on your energy levels as they can be a strong indicator that something is wrong.

 

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Bowel Cancer Awareness Month – Day 8 – The Truth of the Colonoscopy

A colonoscopy is a simple procedure where a tiny camera is inserted in to the colon so the doctor can see exactly what is going on in the large intestine.

Before the Procedure…

You have to drink what can only be described as a minging drink, which will act as a laxative to empty the bowel.  This allows the doctor to get a good look at the intestine lining.  I’m not going to lie, it’s not the most pleasant experience (especially when you have a colostomy), but it’s a lot more pleasant than  having cancer or whatever illness you are being checked for, trust me!

Top Tip – Stay at home when you take the drinks so you can be near your own toilet, things do get moving quite quickly and frequently.

At the Colonoscopy…

You may be offered gas and air or a sedative, I have done both and I would definitely recommend the sedative.  It makes the procedure much more comfortable.  The sedative is given through an injection in the back of the hand.

Top Tip – Do not worry about the procedure.  I remember being so freaked out by the thought of having the procedure but in truth, the thought of having a colonoscopy is immeasurably worse than the reality.

The camera is entered through the rectum, so you will lay on your side so the doctor can insert the camera.  Or if you have an ostomy, the camera will be entered through the stoma.  Pictures from the camera are shown on a TV screen so you may be able to look – should you be so inclined?!

They Looking For…

Any irregularities in the bowel lining.

Polyps, which are small growths that the doctor can remove using a small polyp remover that is on the end of the camera.

Top Tip – You won’t feel anything if they do remove polyps, so don’t be concerned about that.

After the Colonoscopy…

You will be given a little time to rest and relax and allow the sedative to wear off.

The doctor or nurse should speak with you and let you know how the procedure went, as well as if they removed any polyps or tissue for biopsy.  Results from a biopsy can take a few days and they should be able to let you know exactly how long and how you will get your results when they speak with you.

Top Tip – In my case, they discovered a large cancerous tumour and I was taken aside so the consultant could speak with me privately and give me my diagnosis.  I had my husband with me and appreciated having the support when getting the news.  If possible I would try to have someone you trust with you.

You will not be able to drive if you have had a sedative so arrange for someone to take you home.

Occasionally having the procedure can cause some problems to the large intestine…  

I have had 3 or 4 colonoscopy’s now and have never had a problem but do speak with your doctor if you experience any of the following…

  • Abdominal pain – particularly if it becomes gradually worse or is different from any ‘usual’ pains that you may experience.
  • A high temperature.
  • Passing a lot of blood from the rectum.

Colonoscopy’s really are the most effective way to see if you have any kind of growths in the bowel.  CT and MRI scans only show part of what is going on inside the intestine.

If you are genuinely concerned about a bowel condition, make sure that your GP refers you for a colonoscopy, nothing else will really give the insight needed.

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Let’s Begin at the Beginning – Why I Have a Colostomy Bag

MY LATEST POST ON WWW.MYOSTOMY.CO.UK

When I was pregnant with my second child, I knew that I had bowel cancer.
You know your body, you know if something is wrong, and I knew. This feeling combined with textbook symptoms and a basic knowledge of bowel cancer due to a strong family history (my mother, grandmother and great-grandfather all died from bowel cancer) left me convinced it was the only thing it could be. Even so getting a diagnosis was not as easy as it should have been.

I had been getting rectal bleeding on and off, since around 2006.
Over the years I had visited various GPs but they always said the same, that I was too young to have bowel cancer and if the bleeding went, there was nothing to worry about. The bleeding stopped so I breathed a massive sigh of relief, swiped the sweat from my brow and went on in the blissful ignorance that not thinking about things like ‘your health’ brings.

Read more……….

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Starting University with an Ostomy

I had no time to sit at home getting used to having a colostomy. I started chemotherapy six weeks after surgery, so I was in and out of hospital almost straight away.

I thought I was used to being out of the house. I hadn’t quite considered that a hospital is somewhere notorious for being understanding to people with health conditions; turns out this is quite different to somewhere like a place full of barely legal hungover teenagers, I’m sorry adults, with a lot to say for themselves. I am being horribly harsh, as my fellow students are completely lovely (the smell of stale alcohol generally subsides after the first month or so), but this was the fear I was starting university as a mature student ostomate with.

Read more………

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Just Keep Swimming – Swimming with a Colostomy

The thought of swimming seems to be something that a lot of ostomates struggle with and, of course, I understand why. It was something I was very worried about but it just sort of happened.

A friend asked me to join her on a trip to an amazing spa close to where we live to celebrate and relax after finishing my cancer treatment, which I leapt at, paid nearly £200 for (I know, but I had just survived cancer, totally deserved it), then went into a complete hyper-melt-down-type-panic over. How on earth I was going to do this with a colostomy?

This was only about 6 months after the surgery that gave me my colostomy and two months after my final bout of chemotherapy had finished, I was still wearing balloon sized clothes. There was no way I could wear a swimming costume – the bag would show through, it would become unstuck and float around the pool, and if that didn’t happen, the large neon sign flashing ‘this girl has a colostomy on’ above my head was bound to give it away!

Read More……….

Taking a Swim!
Taking a Swim on Holiday!

Sky News, Social Media, Selfies, Colostomy’s and People Who Don’t Want To Know

I was so excited when I got a phone call asking if I would be interviewed for Sky News.  The chance to talk about Cancer and Colostomy’s on actual real-life national news, yes please! The premiss behind the segment was looking at how social media gives people a chance to express what they are going through and interact with campaigns like Cancer Research UK‘s #NoMakeUpSelfie and Colitis UK & Bowel Cancer Research‘s #GetYourBellyOut.  My part was recorded a few hours before through Skype (so clever) and inserted into the segment. I didn’t know which part of the interview they are going to include and a wide topic became quite a specific issue so I wanted to discus what they didn’t have time to show. Why Are Campaigns Such as ‘No Make-Up Selfie’ Amazeballs? 11870_10152357217119474_281799384_nI think one reason is the ability to engage with the charity.  You can send a photo and the charity can post their own pictures like this one that Cancer Research posted on Facebook in March.  I was fascinated to learn how the money raised was being spent. It’s an easy way to get involved and do something positive for charity.  I am never going to run a marathon but I can take a photo, have a giggle and text donate £5 with minimal physical training required. It’s also a bit of fun.  We are used to presenting our best-selves on social media, it’s fun seeing everyone strip that back and show it like it is. Why Use Social Media to Discuss Delicate Issues? When first having a colostomy I felt very isolated, ashamed and embarrassed.  It is through speaking about it, explaining, hopefully educating and experiencing the lovely support from people, that I have become more accepting.  Don’t get me wrong, I still get embarrassed but have decided rather than shrink away from the embarrassment to power through it and gain strength from it. 603591_10153939743255153_437681074_nI haven’t done a Colostomy-Selfie but for #GetYourBellyOut I posted this picture and donated.  Even showing some scarring took a lot of courage and was a real break-through moment for me. What About the Poor People Who Don’t Want to See Colostomy’s? Ahh, those poor people, unable to scroll down or look away, must make life very difficult for them. Ok, seriously. Sky News asked this and it’s something I have seen people saying online.  I understand not wanting to see it.  I wouldn’t have wanted to see it before I had one and this is exactly why we need to see them.  The more we see something the more normal it becomes.  If people were posting pictures saying ‘look at me wearing glasses’ you would think, so what?!  It’s only because traditionally ostomates have hidden their bags that it seems novel to see one. “Showing A Colostomy Doesn’t Change Anything?!” This is something I keep hearing and I couldn’t disagree more.  I did touch on this in the interview.  It has helped my confidence and acceptance hugely.  It has given friends and family an insight into what it is and as a result they have been even more wonderful and supportive.  And really it goes back to the point I just made about people having to get used to seeing ostomy’s. 10414574_930802690279121_2727569953559798389_n“Bethany Townsend only got this huge publicity because she’s pretty” I agree, but that is what makes it perfect.  When I looked at her picture I thought,”wow she’s beautiful” and that’s the point.  It is her beauty that you notice and the bag becomes inconsequential.  It’s there and part of her but it’s not what defines her – her beauty and amazing figure do that.  To be fair, I am sure there is a lot more to Bethany and she is defined by more than the way she looks. For me, Bethany’s bags not being what I was looking at was liberating in reminding me that I’m not defined by my bag either.

I find it hilarious that people can’t believe she’s pretty, like only ugly people get sick

Being pretty and having a colostomy aren’t mutually exclusive!

The BEST Thing About The Colostomy-Selfie That they have started these conversations.  When else would a colostomy be discussed on Sky News?  Or Facebook, Twitter, numerous blogs etc…  Whether people like it or not and want to discuss it or not, it’s out there now and I am hoping this is a massive leap in the move to helping ostomy’s become a more understood and talked about, normal way of life.photo copy 4 If you missed the segment on Sky News don’t panic you can watch it here….  It’s about 10 minutes in. Sky News – Digital Generation 13th July 2014 Shockingly no one recognised me walking down the street after it aired, guess I am a little way off TV superstar status my mother-in-law thinks I now have! 🙂   Please let me know what you think.  Would you do it?  Have you done it?  Do you like / hate it?  Click on comments and let me know. Follow this blog!   Just add your email address and press FOLLOW, click on the email and you will get an update every time I post – it also gives me a warm glow when people follow, I genuinely love it! 🙂 You can also follow me on Facebook and Twitter.

Is The Sun Setting on Hiding Your Colostomy?

As I said in my Nicola B and the Two Big C’s blog post, I have never hidden the fact I have a colostomy, traditionally I have never made a massive point of it either.  This has changed slightly in the last few months.  Talking about it more openly through the fabulous Cancer Research UK and starting to write for Coloplast UK and this blog have all, on a very personal level, made the experience of living with a colostomy easier for me.

The colostomy still remains hidden in many ways.  I still dress in a way that keeps the bag unnoticeable, I generally wouldn’t mention if I was having a problem with it and even when writing articles about going on holiday or swimming with a colostomy, the emphasis has been on how to hide your bag and I think that I can generally say this is the same for most colostomy wearers (we generally refer to ourselves as Ostomates).

But something strange has been happening on my Facebook and twitter pages.  Photo after photo of ostomates proudly showing off their bags!  I think the most well-known would currently be the absolutely gorgeous Bethany Townsend with her photo in her bikini on honeymoon in Mexico.

1970702_869609589731765_188481301_nCrohn’s and Colitis UK shared Crohn’s and Colitis UK’s photo.
July 2 · Edited

“I’ve had Crohn’s since I was 3 years old but was misdiagnosed until I was 11. Just 4 weeks later I was having 16 inches of my bowel taken out.

Since then I’ve been on steroids, infliximab, methotrexate and every other drug going as well as being tube fed for 4 years. After five more operations my bowel burst 4 years ago and I ended up with two colostomy bags. They thought that would help until 4 weeks later and it was back.

10414574_930802690279121_2727569953559798389_nI then went on to have a stem cell transplant which was in trial in the UK, we all hoped it would work but unfortunately I caught MRSA of the skin and the blood and it nearly killed me twice. Since then my Crohn’s has still been extremely active, I’ve lost more weight and now I’m waiting for the NHS to fund a drug that hasn’t really been in the UK. If this doesn’t work a bowel transplant is in talks as I can’t have anymore of my intestine out as I haven’t got much left.. BUT I’m still hopeful.

Finally after three and a half years, I decided that my colostomy bags shouldn’t control my life. So when I went to Mexico with my husband in December last year I finally showed I wasn’t ashamed. Still hoping for a cure…”

#myCCUKstory by the truly brave and inspirational Bethany Townsend.

Help us find a cure by making a charity donation at https://www.justgiving.com/crohnsandcolitisuk or Text CCUK14 £5 to 70070

She looks SO totally gorgeous.  All I kept thinking when looking at it was, I wish I had that girls figure!  But Bethany isn’t the only one, there is also the amaze balls Blake Beckford and the wonderful Thalia Skye, all showing them off.

What does this mean for me?

Well I’m not putting a belly-selfie up yet although if I’m honest that’s more weight vanity than anything else.  (What??  Colostomy or no colostomy I’m still a girl!)  Once I reach my goal weight, I may consider it, but seriously,

When I started writing for Coloplast, they told me that their hope was to make having a colostomy as normal as glasses or a hearing aid, just something some people need to live life to the fullest.  This seemed a tall order because truth be known, I didn’t see my own colostomy like that.  I saw it as a hinderance, a cruel reminder left on my body by a hideous disease.  One that I accepted I had to live with and I was happy to get on with, but I hated it nonetheless.  If I hate it, how will anyone else ever accept it?

What these Ostomates have truly done for me is given me a confidence that I didn’t imagine I would ever have about my colostomy.  

It is not something to be shy about or hidden, it is something to be embraced and thankful for.

I honestly never thought I would reach a time in my life when I would think that about my colostomy.

So for that I am truly thankful to all ostomates who are putting themselves out there and normalising having a colostomy (or iliostomy – more about that in a later post).

My wonderful friend who bought me Fish and Chips when I was having my ‘This Too Shall Pass’ day said, “surely its just like underwear”.  I had never thought of it like that but she is so right.  Non-ostomates cover their privates with pants and knickers, I cover mine with a bag…. I do also still wear knickers… just wanted to make that clear!

The shifts that are happening in my brian at the moment are nothing short of miraculous and I truly have all the amaze balls Ostomates who are sharing their stories to thank for it xxx

As well as my friends, family, Cancer Research (especially you Tom) and Coloplast, love you guys xxx

 

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