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It’s my 6 year no coloniversary! Happy birthday ileostomy!

Six years ago today, I had my colon removed and my first ileostomy formed! And what a ride it has been since then!!

You can read that first update Timm made after the surgery here, it is weird to read back. We were both so naïve and knew so little compared to now!

ulcerative colitis surgery

What has changed? The 4th ileostomy!

So much has happened since then. I have had 7 more surgeries, a jpouch, a jpouch removed, multiple hernias, fatigue, joint pain, months in hospital, my butt removed and 3 more ileostomies!! I have also gained so much, I started working for Scope and presenting for the BBC. So Bad Ass reached well over 3 MILLION views and had many amazing opportunities. I have worked with Crohns and Colitis Uk on their campaigns. It was amazing to be named as one of the 100 most influential disabled people in the UK. I have spoken at events all over Europe and the UK and met some wonderful people!

Some things haven’t been great. I never knew that first surgery would set me off on a path to 7 more in 6 years. Sometimes, it has felt too much to bear and on more than one occasion I have wondered ‘why me?’ I have seen people I thought loved me leave me. I have felt more alone than ever in my life. Like the burden of my illness was too much for those around me.

Through it all though, the ileostomy bag really did give me a life back. It has given me back control and allowed me to travel the world and actually plan things in with my family. If I could do it again, would I? Well hindsight is a wonderful thing. Maybe if I knew the pain I would face over and over again, I would have been too afraid to go ahead with the surgery. But maybe the outcome would have been very different if I hadn’t had my colon removed. Maybe I wouldn’t still be here, or maybe I would be here but still sat on the toilet 20 times a day in tears?

What advice would you give yourself?

None of us have a crystal ball and we have to roll with the punches and do what feels right at the time. I’m sure I have made mistakes and could have done things differently but today I was thinking about what advice I would give myself back 6 years ago. So here it goes:

It’s ok to be scared/sad/angry. I think 6 years ago I felt like I had to feel grateful for just being alive and that any ‘negative’ feelings were me letting myself and others down. This is rubbish. All emotions are necessary and none should be shunned. You body and your life will be changing a lot and you need to process all these changes. Allow yourself the time to feel what you are feeling.

Speak up – talk to the people closest to you about what is going on physically and mentally. Tell them how you feel and what you need.

There is no right way to ‘cope’ – What works for one person won’t work for the next. Listen to your body, listen to your heart.

Don’t do too much too soon. I know how hard it is to rest up, but you have been through a HUGE surgery! You need to give your body so much time to heal. I have always done too much too soon and I have lived to regret it.

You are a warrior. You have come through a tough surgery and your body looks and feels very different, you have a hard path in front of you, but you are a warrior and you can do this!

Think positively. I know, I know, you just rolled your eyes!! But really, it is easy to slip into negative thinking. There will be positives in your life, no matter how small, and trying to find those silver linings in your day can help so much.

If you could go back in time and give yourself advice back when you were diagnosed or to a point of your illness where it changed, what would it be? If you have an ileostomy, what advice would you have wanted to hear?

Sam xx

No Coloniversary

Three years ago today, I was wheeled into theatre and had my colon removed and my first ostomy created. I’d been in hospital for weeks, and this was the end of the line after 10 years of ulcerative colitis.  At the time, I thought it would be the end of all my problems and though I was upset, distraught and terrified, I truly felt that I could start a brand new life without illness.

In the past three years, I’ve had three further surgeries, multiple hospital visits and I’m awaiting a date for my fifth and possibly sixth surgeries!
Don’t get me wrong, I don’t regret what happened. I’d had years of flare ups and illness but I don’t think I really recognised that this was just another chapter in my health story, rather than the end of it.

sam cleasby blogger ostomy ibd disability

There are so many wonderful things that have happened in the past three years, things that would have been difficult, if not impossible with my ulcerative colitis. I travelled to Vietnam and Australia, I renewed my wedding vows and I started this blog!
This place has been such a blessing, it has been my diary, a cathartic release to spew out all my feelings. It’s also let me down a new career path, three years ago I’d have never believed I’d be on TV and radio or that I’d be featured in nearly every major newspaper! I wouldn’t have thought I’d be sitting on the This Morning couch with Holly and Phil, be going to parliament, be writing for a newspaper or be in US People magazine!!

sam cleasby this morning holly willoughby Philip schofield

More than that though, I wouldn’t have believed that id have the strength to help others. To inspire and support people all over the world.  I wouldn’t have thought I’d be meeting wonderful new people who courageously share their stories with me and make me carry on writing.
Three years ago today, as I lay in the high dependency unit, tubes everywhere, I was at my lowest.  I was broken, helpless and my soul hurt.  I felt like my body was a failure, that I had become a burden to everyone around me. I felt as though the world would be better off without me.

sam cleasby blogger ostomy ibd surgery

This blog helped me through the toughest times of my life and I want to thank every single one of you for reading, commenting and supporting me.  I’ve had well over 2.5 MILLION views now, I still can’t believe that number when I say it out loud! And every single reader has a place in my heart.
Thank you for following my journey for the past three years, I hope you’ll continue to be by my side for the next three.

Love Sam xxx

Its my six month no coloniversary!

Can you believe it? It has been six months since I had my colon removed, on 3rd September 2013 I had a sub total colectomy.  Six months of having my ileostomy bag, six months of no going to the toilet for a poo, six months of no farting!!

Six months ago at this time, I was waiting on my ward nil by mouth.  I had told Timm not to come in as I wanted him to take the kids to school and wanted him to be there when I woke up after the surgery.  I sat alone terrified.  I knew it was the right thing for me to do but the future seemed so frightening, so unknown.  What would life be like with a stoma? How would my family and friend react? What would my kids think?  Would I feel like less of a woman after?

All these questions circled around my mind as I lay in that hospital bed waiting for the call.  Finally I was taken down to theatre and had just the best care and support before the op, my final thoughts as I drifted off with the anaesthetic were of laying on a beach in Australia with my sister…

ulcerative colitis surgery sub total colectomy with end ileostomy

I woke in recovery, tired, in pain but relieved to be waking up.  Timm was there, he leant over me and hugged and kissed me and though I was in this entirely alien environment, it felt ok because he was there with me.  There were issues from the surgery, concern over blood tests and infection and so I spent my first night in HDU.  One small room where my bed was in the centre, I had so many wires, tubes and bandages all over me.  I had one nurse all through the night who watched over me and kept checking, rechecking and checking again.  It was scary but I felt safe and that everything was going to be ok.

recovery from sub total colectomy and end ileostomy

I can’t believe that was all six months ago!  There have been ups and downs in my recovery but in the last six months I have felt better than I have in the previous ten years.  My Ulcerative Colitis has gone and I no longer live in pain and on the toilet.  For anyone going through the surgery at this time, just hold on in there, it is a hard slog but things will get better.

In the six months since my surgery I have been to Vietnam, on boat trips and cycled round a Vietnamese island, I have snorkelled with fish and rays in Australia and hiked the Blue Mountains.  I have gained an enormous respect for my body and my confidence has gone through the roof.  I’ve realised who my true friends and family are and seen the best in human nature in those around me, I have been supported by the kindness of others and Ive helped people going through life problems by blogging my journey so far.  I have had a realisation of the frailty and briefness of life and it has made me want to do all those things that I dream about, in my work life, home life and with Timm.  It’s made me braver, the things that scared me before suddenly seem so small and easily overcome, after all I had an organ removed and have marched on from it so how can anything else stop me?

Who knows where the next six months will take me.  Despite a great recovery so far I am struggling at the moment with a hernia behind my stoma, I do feel like this week has put me a couple of steps back in my recovery.  This has hit me emotionally as well as physically, Im frustrated that Im back on bed rest and need to learn the best way to deal with this hernia and the issues around it.

Im planning my pouch surgery with my consultant, Im also moving house, starting a course to improve my writing skills and renewing my wedding vows!  All this plus work, running our photography business, a summer tour with arts group Responsible Fishing and raising three kids!  It will be a busy year and Im sure there will be ups and downs but in the words of a true Sheffielder, it’ll be reight….

So Happy Six Month No Coloniversary to me!!

no coloniversary

Love Sam xx