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Showing posts from September, 2014

A catheter. Up my bum? You've got to be kidding me!

My pouch hasn't been too great. I've been going to the toilet up to 20 times a day and 4 or 5 times a night, with some occasions lasting 5 minutes, others lasting an hour. I knew that something wasn't quite right and this was confirmed when I had an out patient appointment at St Marks a few weeks ago.  I saw Dr8 and my pouch nurse who told me that results from the pooing xray (remember that one?) show that my pouch is only emptying 10% of the contents and that suggests along with all my other symptoms that I have functional problems with my pouch. Test results also show that the muscles and sphincters in my bottom aren't working in sequence and that the signal from the brain is getting confused by the time it gets all the way down there. Brilliant news.  Plus I've been having the problems with eating. Everything hurts my tummy except rice and eggs again. Apparently that's all that Dynamo eats as he has Crohn's disease quite bad so at least I'm in good co

I've survived the summer holidays!

The kids went back to school last week. Facebook was filled with photos of kids in new uniform ready to start the new school year. Every mum would of been proud of their kids that morning but none more than me. And here's why. Last year I spent the whole summer in hospital and missed loads of events and milestones. Last year I had to get a few hours of day release from the ward to make it to their first day back and hubby had to push me in a wheelchair because I was still very unwell.  Looking gorgeous in my pjs (some said we looked like Lou and Andy from Little Britain- I want that one!) But  this year I've spent the whole summer holiday at home having quality time with the kids. And I've loved it and in a way I was sad for the holidays to be over. But I was also very tired and ready for a rest. This is the longest period of time that I've been at home and not had an inpatient stay in hospital since May 2013!!  And although I needed to use I've a walking stick to h

The not so great London swim

My sister Kelly was due to take part in the Great London swim on Saturday 30th August to raise money for the St Marks Hospital foundation. She was travelling down to stay at mine on the Friday when she received an email to say that it had been cancelled.  When she rang to tell me I was shocked but I could hear in her voice that she was totally gutted. She was fighting back tears. Earlier in the day she had been elated when her fundraising went over the £1000 mark and now she was being told the swim was cancelled and all the training had been for nothing.  But Kelly is stubborn and doesn't give up easily (something that often drives me mad but in this case was a good thing!). She got onto Twitter and amongst the grumbling and complaining there was talk by other swimmers of completing the swim somewhere else. There were plenty of other people in the same boat as Kelly; they'd raised sponsorship money for charities and now had no event to participate in.  So we trawled the interne