More than just a bag lady

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...

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...

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 ...

Last week was brilliant. But boy am I paying for it now. I am exhausted. Bone achingly tired. I  spent most of Sunday in bed, but luckily my parents were still here so they kept the kids entertained and Mum whipped up Sunday lunch for us all and Dad did the washing up.  By the time I woke up yesterday Hubby had left for work and Big Girl was already awake. Big Fella had come into our bed in the night after having a nightmare and so hubby had ended up sleeping in his mid sleeper as he's such a wriggler. I was surprised to find Big Fella was still lying next to me but he was watching a video on his iPad which helps him to stay still for more than a minute!  His blonde hair was all messy which has earnt him the nickname of Boris Johnson amongst family and friends.  After nagging the kids about the state of their rooms I thought I had better practice what I preach so I spent the morning tidying my room which translates as picking up a few things off the floor, then lying...

It's been Big Girls birthday this week and I couldn't help but think of how different this year was to last.  Last year I was in St Marks hospital after having had my pouch formed in mid July 2013. I was in a bad way as I'd had infections, complications and was struggling with hydration issues. I was so poorly I wasn't even well enough to leave the ward so it meant that she had to come to the hospital. On her birthday.  I felt as though I had totally failed as a mother. I had already been in hospital for Big Fella's birthday earlier in 2013 but managed a few hours day release. I felt that no child should ever have to spend the day in a hospital on their birthday.  Hubby and I asked her what she wanted to do on her special day. I didn't want to make her come into the hospital if she didn't want to and even though I would be heartbroken if I didn't see her I was willing to do that to make her happy.  She decided she wanted to come and see me in the morning...

I've just got back from my holidays. It's been two of the best weeks I've had for a very long time. The first week was spent in Devon with Hubby's family and the second in Cornwall just the four of us. The sun shone every day but it wasn't so hot that I couldn't cope with it. We were so lucky as it meant that we got to spend lots of time on the beach building sandcastles, flying kites, body boarding and playing boules.  Week 1 was spent in a caravan in Woolacombe. I had never been there before but some of the school mums had recommended it to me and we weren't disappointed. Although the site was a bit hilly, it did mean that you had great views of the beach and out to sea. I would definitely stay there again. They were really helpful with regards to my 'medical condition'. They put a second fridge into the caravan free of charge to store my TPN fluids and when I had to get an emergency delivery of supplies they took the delivery at reception and then...

I'm Natalie's friend Sara - previously referred to in this blog as the woman who scared a car full of people with my terrible driving & lack of basic knowledge of car buttons and thingamajigs.  I'm also the same person who threw up continuously when my husband trod on some open scissors and asked me to get the first aid box from the car. Poor man had to hop to the car and get it himself and pull the scissors out. I also traumatised numerous children once when my son cut his head open and I ran hysterically through the school, with blood spurting everywhere. A member of staff stemmed the small but gushing cut with one finger and all was calm again. Now why didn't I think of that!  You get the picture, not the best person to rely on in an emergency! But if you are Natalie's friend, then it's highly likely you will have witnessed her fall very ill at one time or another and she will have needed help. On several occasions, her calm and collected friends have not...