Claire's Stoma Story.
2012 – a year few people in the UK will forget. On March 31 I was hoping to fulfil a childhood dream and was going to take part in The Olympic Park Run – a 5 mile run around the new Olympic Park finishing in the stadium. I’ve always been passionate about sport and the Olympics has always been a viewing must – so to actually run in the stadium and cross the finish line was a no-brainer!
Training was going well – by February I was running 4 ½ miles so knew that completing the 5 mile run was going to be no problem. At least so I thought ….
February 2012 – I left work for half term feeling rough – there had been a few bugs going round so I thought I had caught one and figured a quiet weekend would sort me out. I did not get better – I spent the whole week feeling ill and not eating. After several trips or phone calls to the doctors, who simply tried a different combination of medicine each time, I was virtually bedridden with stomach cramps. My husband took me into A & E.
I went into hospital on Tuesday 21st February. It took the hospital two days of tests for everything to diagnose my symptoms as Ulcerative Colitis – an Inflammatory Bowel Disease. I was put onto a high dose of steroids to try to control the inflammation. On Friday 24th February I was dealt another blow – my colon was so swollen there was a risk of it bursting. A surgeon was sent to see me to discuss the removal of my colon. Understandably I was terrified by this- as was my husband.
Although the past few years had not been good – my doctor had diagnosed my symptoms as IBS and we had lived with these for the past three years but neither of us had any idea of what a future would be like without a colon. Despite the detailed explanations from the wonderful stoma nurse it was still a scary thought – and we were unable to talk about it as the hospital was closed to visitors because of a norovirus outbreak.
Needless to say on Monday 27th February my colon was removed and I was left with an ileostomy – where part of my small intestine forms an opening on my stomach and a drainable pouch collects my poo.
I went home four days later and began a long road to recovery.
As the Olympic Park run was less than a month away there was no way I was ever going to complete the run – I could barely walk. As we had already booked our hotel we decided to go down to London any way as it was a small milestone for me to aim for. Going past the stadium on the train and watching the coverage on the TV was hard. My dream had gone. It was a once in a life time opportunity that I would never get again. But I was alive and I was getting better.
We were determined to get our lives back – I gradually built up my strength and my weight. I walked every day and after my 8 week check with the surgeon I was able to slowly go back to work and to the gym. Over the summer we went camping, cycling and walking, we spent an awesome weekend at the Paralympics.
What was amazing – for the first time for years we were able to do things together as a family without having to worry about where the nearest toilet was. Up until I went into hospital I would get up, rush to the toilet, I could go to the toilet up to 10 times before I even left for work. We never got through a meal without me having to go to toilet, could never get through an evening without me having to go the loo. My little girl probably spent more time with me in the toilet than anywhere else. Even if she woke up at night I would just have time to go and get her from her bed before I would have to run with her to the toilet! When I needed to go – I needed to go. There was not a great deal of time.
That all changed with my ileostomy – suddenly we could do things together as a family, we could go out, go to the theatre, go swimming, eat a meal, watch TV. The change was immediate. As soon as my colon was taken out – the sick part of me was removed. I felt better. It took time to recover from the surgery but essentially I was well. I recovered quickly – essentially despite the colitis I had fought to stay fit and strong – I was still running up to about a week before I went into hospital, I was still going to the gym and without a doubt that helped me to recover.
I gradually set myself targets to improve my fitness – once I got the go ahead from the surgeon I was able to go back to the gym, I walked and on holiday in early August we cycled something I kept up for a while once we came home. I went for the occasional jog but as my stomach was still healing found this uncomfortable – I also didn’t like running with the support belt on.
In September I signed up for the Aspire Channel Swim and over a period of 13 weeks swam across the channel. I was also working hard at the gym – I knew at some point I would have to have surgery again and was determined to be as strong as possible.
Very quickly we stopped thinking about the stoma and the attached bag – it was part of me, but a part of me that made life good. I had mainly good days where I didn’t really think about what had happened the something would happen – or my stoma would play up whilst I was changing the bag and I would have a bit of a downer. Fortunately I had strong positive people around me – my husband was awesome and would let me cry and moan and then remind me what we could do. My little girl was a constant positive although I tried not to let her see my down times and it was a joy to be able to spend time with her doing normal things.
As 2013 dawned we gradually started to put closure on 2012 – we celebrated New Year in Fuerteventura. I had been able to fly and travel through the airport without rushing to the toilet several times. My husband and I celebrated Valentine’s Day with a Chinese as in 2012 – but this year I was able to eat it and enjoy it.
Finally – there came a final opportunity to put closure on everything – The National Lottery announced they were going to host an Anniversary Run – the same 5 miles round the Olympic Park finishing in the stadium. It was too good an opportunity to miss – there were 10000 places and I was determined to get one of them.
I was one of the lucky ones and on July 21st 2013 I will be running round the Olympic Park and crossing the finish line, with my husband and my little girl watching me in the stadium. It will be our celebration of good health, how far we’ve come and our way of moving on to a future with my stoma but a future we can all enjoy!
Having spent 3 years living an active healthy life .. doing things I would never have been able to do before having my surgery in February 2015 .... almost exactly 3 years to the day of my first surgery I went back into hospital. This time it was an elective surgery I was going to have a proctectomy ... the excision of my rectal stump. Barry, my stoma was going to become permanent. I had made a decision within a year that I did not want to have the J-pouch surgery. (This is where surgeons create a collecting pouch and then reconnect it to your rectum effectively allowing you to go the toilet normally again.) However because I had made this decision the surgeon had to remove my now defunct rectal stump. If it is left there is an increasing risk of it becoming cancerous. Interestingly when I read the notes following surgery, despite having been resting for three years my rectal stump was still inflamed with UC.
I am now looking forward to a continued healthy future, hopefully without too many more hospital visits. This year I have started fundraising for Crohn's and Colitis UK by completing a 1000km challenge. I am enjoying running again, going to the gym and spending time with my wonderful little family. Unless I tell them, or they read my blog nobody knows I have a stoma.... most of the parents I have met at my little girl's school had no idea until this surgery. Some still don't!!!!
Barry is an important and welcome part of my life... indeed he is a lifesaver, however my stoma does not define me nor does it stop me from doing the things I enjoy.
Please note this is Claire's story, remember to always get medical advice for yourself.