Starting University with an Ostomy

Colosto-ME

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………

photo-2-e1409829256436-300x225

Just Keep Swimming – Swimming with a Colostomy

Colosto-ME

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

Colosto-ME, Press Appearances

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?

Any Human Heart, Cancer & Me, Colosto-ME

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

 

Did you know you can follow this blog?  Pop you email in the field on the right and get updates straight to your inbox.

You can also follow me on Twitter and Facebook.

Please do stay in touch xxx

 

Nicola B and the TWO Big C’s

Cancer & Me, Colosto-ME, Journey Back to Health

photo copyObviously the first one is Cancer.  But I have another big C, in a lot of ways it is a bigger C, certainly to me, so big that I often don’t really speak about it.  The other big C is my Colostomy.

For those who don’t know, a Colostomy is when you have part of your large intestine removed and what’s left diverted through the abdomen wall.  There are occasions when the procedure can be reversed but not in my case.  Truth be told, I struggled with finding out I needed a colostomy more than finding out I had cancer – cancer I could deal with, this I couldn’t.  I thought it was the absolute worst thing that could happen to me and I went into a very strange denial, praying it wouldn’t happen right until I woke up from my surgery.

I actually said if I didn’t have kids I would prefer to die than have a Colostomy.

I have never hidden the fact I have a colostomy but I’m not overly vocal about it either.  Why?  Embarrassment essentially.  It still has a terrible stigma and I was beset with fears about the things I wouldn’t be able to do and what people would think when they found out. My worst fear bring that people would think that it/I was minging. A fear that derived completely from my own thoughts and perceptions about it what living with a colostomy meant.

There are over 175,000 Ostomates in the UK

Why talk now? Once again I had a fantastic opportunity this week.  I was contacted by a wonderful woman, Thalia Skye, who works with Coloplast (the company that creates & manufactures my ostomy wear) about working with them to remove some of the stigma by talking about it and and letting people see that I live a completely normal life, that is undefined by the fact I am an ostomate.  Done through blogging, tweeting, vlogging – basically everything I love doing, and talking more openly about things people don’t talk about.  Anyone who has read any posts on my blog will know this is completely up my street.  I couldn’t have replied quicker saying yes, yes, yes!

photoSo last Friday at the crack of dawn I headed up to Coloplast UK HQ in Peterborough.  They were just the nicest people working in a way that can directly benefit thousands of ostomates lives.  Although they are a manufacturer they are researching and finding ways to make life for ostomates easier, more comfortable and less of an issue so they can just get on with living.  They truly have a passion for what they do and I loved the thought if working with a company who is continuing to develop easier ways for people like me to live.

I meet wonderful ostomates and it was so nice to meet such inspirational people going through the same yet also unique experience.  The tales that bought people to having an ostomy were as heartbreaking as they were poignant.

The bigger picture of why one has an ostomy can get forgotten.  In my case, it means that I no longer have cancer.  In other people’s cases, they no longer have a life-threatening and debilitating illness.  One person told me how her surgeon told her ‘either you have a bag or end up in a bag’.  Although this wasn’t delicately put, it serves well to remind us that it is what someone is facing going into ostomy surgery.  Without this operation, they will die.  Yet to some (myself included) having it is still unbearable. As I said before, I thought if I didn’t have kids I wouldn’t go through with the operation (I will always laugh thinking of my sister saying, what about me, aren’t I worth living for!)

The thought of having an ostomy is immeasurably worse than the reality  

I never thought I would get used to it, yet only a few months after surgery I was telling someone who needed a colostomy that it was nothing to be afraid of and I was managing OK.  I was shocked as the words came out of my mouth, I couldn’t believe I was saying it and that was when I realised – it was true!  I could, and was, doing this.  Do I wish I didn’t have it?  Of course.  But on the whole is it perfectly manageable and there is nothing that I did before that I can’t dophoto copy 3 now.  And that is what this campaign is all about.  Letting everyone know that life stays the same, your alive (yay)!!, more comfortable than before and to remove the stigma.  The dream is one day soon an ostomy is considered as normal and inconsequential as glasses or a hearing aid.  I recon we can do it!

As soon as I have more information about the website I will of course let you know but until then keep talking, listening and caring for everyone going though anything.

A little more compassion can never go amiss.

Nicola B and the Big C

Cancer & Me, Journey Back to Health

Have you heard that I had cancer?  Of course you have, I talk about it…. a lot!!

Some people find this strange, a lot of people consider serious illness to be something that should be private and dealt with behind closed doors but that has never been how I felt.  I have complete respect for anyone who can handle it this way, I couldn’t keep something like this to myself, I know I would just blurt it out if I tried.

However I have taken it to another level by talking about with press and for charity campaigns.  Some people find this REALLY strange and think that I am so brave, but I had never looked at it like that.  I talk about it all the time, I can totally handle this, or so I thought?!

It all started because I contacted Cancer Research UK Patient Liaison department and told them my story.  Given the details they were keen for me to speak out and it started with a fantastic campaign for Cancer Research UK, Stand Up 2 Cancer.

Image

It felt so fantastic to tell the story, get it out of my system and feel like I could be putting my experience to some good.  The photo shoot with my father and children was a lot of fun.  Reading the details in black and white was strange though but I felt quite detached, like I was reading someone else’s story.  I then went on to do further features with Cancer Research (all of which I will upload here as soon as I am able), which I also really enjoyed.  Talking about it and feeling that I was doing something to help, turning it into a positive experience.

Next was an article for the Sunday Mirror, a Mother’s Day special.  It was organised by Cancer Research UK but this time it would be a Sunday Mirror journalist conducting the interview.  The focus was less about the life saving research, more about the emotional side and how it had effected our family.

Sunday Mirror

This was very hard to read.  No longer did I feel like I was reading about someone else, this was me.  It was quite strange as the article is written in the first person, even though it is actually written by a reporter.  For the first time I did feel I was brave putting this out there.  It even made me wonder if I am strong enough to be putting my story out there, telling everyone all the details of this horrific experience that not just me, also my family and friends went through.  I said to my dad ‘they’ve made it sound so dramatic’ and he said ‘that’s because IT WAS dramatic’.  Oh yeah!

Especially all the talk about bums and vagina’s – I’m such a kid I still get embarrassed mentioning things like that, never mind seeing mine specifically talked about in a national newspaper!

(I have even deleted and rewritten the above sentence a few times – its staying – in MASSIVE letters!)

It has made me realise that it is quite easy to hide behind the facts and figures and that the reality and emotional devastation it can cause is much harder to speak about, and is a lot less frequently spoken about.  I hated the fact that article finished with ‘I’m so proud of myself’ but actually, why?  I should be proud of myself.  I am pleased with what I’ve achieved.  Why I we so quick to pretend we aren’t, incase we look egotistical I guess.  At the end, this has actually made me realise I want to get my story out there even more.

 

 Why?

  • Mainly just to get the message out there.  Bowel Cancer especially is considered a ‘older persons’ disease (65 years plus), but that’s rubbish.  I was 31 when I was diagnosed and my specialists thought that I had already had cancer for 4 years – that’s 27!
  • It is embarrassing, but that is why we need to talk about it more, try to get rid of that feeling so others then feel that they in turn can be more open about it.
  • And if it comes across dramatic, that is because it was dramatic and all contributes to why more needs to be done especially when it comes to ‘young’ people and this awful disease.

I will be posting more blogs about the details of my experience so please let me know if you have any specific questions by leaving a comment, alternatively, leave a comment and let me know what your thoughts are?!

To donate to Cancer Research UK, please click here

For more information about Bowel Cancer including what to look out for, or to donate specifically, please click here