Nicola B and the TWO Big C’s

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.

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8 thoughts on “Nicola B and the TWO Big C’s

  1. Hi, i had bowel cancer two years ago after having an emergency op and a temporary colostomy for a year, everything you said I fully relate too and like you at first I found it difficult to cope. However after about 2 months changing the bag etc was as normal as going to the toilet, there was not a thing I couldn’t do that I did before. That stoma saved my life, it meant I ate properly again, it meant I wasn’t doubled in pain daily ( I was mis diagnosed with Crohns) and now two years on I’ve been reversed, done my chemo, lost hair grown hair and an now back to my proper weight. Very few people made me feel uncomfortable about my stoma and although there were days of overwhelming self pity they didn’t last. I’m lucky my stoma lasted a year before the reversal so it’s easier to accept but I will always weirdly treasure that year knowing my little friend coming out of my stomach like a sliced strawberry worked it’s magic to save my life.

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    • Hi Eddie, I can’t believe you were misdiagnosed, its awful but thrilled everything turned out OK and you are back to full health. You are quite right about the days of ‘overwhelming self pity’, they do come but they don’t last and they get less and less as time goes on. I think that is the important message. Thank you so much for your comment. Nicola x

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  2. Thank you. For two years or so I had been losing weight and suffering a lot of pain in my stomach, every visit to the GP resulted in multiple diagnosis from IBS, bad diet, smoking ( always smoking!) till I believe my then GP settled on Crohns and in fairness for a while it did settle down. Ironically my new GP who’s great thought immediately it was cancer and set an appointment for 14/05/2014 that was the first time I had seen him it was a Friday afternoon and he booked me for tests on the Monday at 8am. Unfortunately I collapsed on the Saturday and the next thing I knew was waking up on the Monday with drips, drains, catheter and…….bag. I think because there was no time to think or reflect I was able to cope with the stoma easier, in the space of 4 days I had a bag and cancer, the treatment I received was excellent I’m lucky Northampton has a dedicated stoma department and those nurses were outstanding, my surgeon was amazing. Typical line from him ” you have cancer, you’re weak, you’re seriously ill…..but I WILL fix you I will make you well just do as I say when I say it!” I’m paraphrasing but he was like a white coated god to me. Three weeks in hospital, 6 weeks recovery then chemo, then 6 weeks break then reversal it reads easily it reads in such a matter of fact way it wasn’t. The thing I hated most was not the bag, once I knew it was temporary and what the stoma had done for me I accepted it more or less no the thing that killed me was how it affected my wife and friends. From over the top reactions to stoic realism. My wife is not romantic, my wiife is not weak she decided early on we would deal with this together, she arranged the house in a new way to make life easier for me, she organised my colostomy supplies, she drove me forward and didn’t allow too much self wallowing ( and I can wallow), she helped me change the bag in the early days, she sat with me through endless chemo appointments, she cooked and cleaned for me she made sure I did as I was told. This is how I got better this was the best way for me. As you say cancer and a colostomy are tough especially together and sometimes it seems that for two years all I did was visit the hospital, GP etc sometimes it seems unreal but I have the scars to prove it happened and it changed me immeasurably. It also helped to see via blogs, websites etc I wasn’t alone or unique so keep up the great work you do and should you need any help at any time please drop me a reply.

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