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My continued story of my new bowel..... and my moment to shine!
Wednesday, 11 July 20125.15pm So much has happened over the last week in my bowel transplant world I am not sure where to start. The beginning is usually a good point I guess.
These last 10 ten days has been a real whirlwind. It started with a few stomach pains and to be honest I took no notice. Those pains got worse very quickly and my wife always knows when things aren't good as I ask her to do my injections. Energy levels dropped dramatically as the pain got worse and very soon it was up there with my all time top three most painful episodes ever. I know that it is a bit odd to be ranking your pains but believe me I think I have developed a pretty good tolerance to pain but this one was right up there with my kidney stone episode and significantly higher than the pain I felt when QPR lost the cup final replay to Tottenham.
My stoma output which whilst plateauing at around 2 litres had changed from its usual pattern of filling up quickly to become the Usain Bolt of stoma outputs. 300/400 even 500ml could pour out over maybe 20 seconds. This had been going on for a while and then suddenly it slowed to something more in keeping with a British sprinter who just scrapped through a qualifying heat. Then the pain in my backside reached fever pitch. I couldn't stand, couldn't sit the only think I could do to alleviate some of the pain was lie on my left side. It did still mean I could send out the odd tweet or facebook post but the tell tale signs that Michael is unwell is when the phone is out of my hand for over a minute.
Somehow my wife drove me back to Oxford while I was wedged at a 40 degree angle on the front seat. Yet again the team there were amazing. My surgeon who had been operating since 5am that morning saw me immediately and it was scope time. He was pretty sure that food had bypassed my stoma opening and got blocked. I still have part of my colon in tact so should have been able to pass it as normal, the only problem was that the colon hadn't been used for so long it was hibernating. I couldn't go to the toilet and I couldn't be sick and I knew that in a few days I was supposed to be holding the Olympic Torch. After bloods my usual discussions on trying to stay hydrated and an interesting chat about my pej feeding my surgeon sent me home reassuring me things would improve. By the way that "interesting" discussion was a male vs female debate and somehow on my transplant team the lady always wins the argument. Come to think of it that is exactly what happens in virtually all parts of my life at the moment.
Deadline day was Friday. I was due to carry the torch on Sunday and if things hadn't improved by Friday I was back to Oxford for more action. All I can say is that when your surgeon tells you that he has never before been so happy to hear a patients bowels open you know how close we got to the deadline. The change of medications, absolute faith in my medical team and a very long heart to heart chat with our dog paid off and finally by Friday afternoon I could at least walk. I had managed to keep myself hydrated for the week but hadn't been able to eat anything or even put on my enteral feed so I was shattered and to be honest probably felt as low as I have been for a very long time but thankfully the episode passed.
And so Sunday 8th July arrived at it was time to become an Olympic Torch Bearer. They call it "your moment to shine" but frustratingly the sun decided to go against that instruction. Sunday was also a very momentous day as a Brit for the first time in 74yrs was playing in the Wimbledon final. However what Andy Murray didn't know was that it was also the first time a Brit with a bowel transplant was carrying the torch. Trump that one Andy!!! With that thought I put the high performance, uniquely designed, beautifully folded pyjama set on.
We set off for the drop off point around 2 hours before I was due to complete my leg and in true British style the weather was appalling. This whole day for me was about saying thank you to so many people. In truth my wife and kids deserved to hold the torch but hey I got the gig and wasn't going to let go. On arrival I was lucky enough to be filmed by the BBC.
The day was poignant for so many reasons and one of the emotional experiences of my life. I was desperate to be a good front man for a IBD patients around the world especially those that have become my on line family. I hoped that I could show that despite however tough things get good times can also happen. I also wanted it to be a way of saying thank to my incredible medical team who literally changed my life and have given me a second chance and I also wanted my amazing friends and family to see that with their support and love I will get my life back on track.
Eventually my emotions got the better of me when about 30 mins before I was due to step off the bus my son Nathan called from Israel. Both he and our eldest son Aaron were away with school and youth tours and couldn't share my moment in person. I was totally fine with it as people had been so kind in making their trips possible and they were having once in a lifetime experiences but when Nathan called and said "daddy I am so proud of you" I just started to cry. I remember him asking what was wrong and I said that I had something stuck in my throat but I could tell in his voice that he was crying as well. Suddenly everything that had been happening to us as a family over this last year hit home. I was only the patient but what my wife Justine and kids had been through was perhaps an even tougher journey than my own.
Then it was off on to the bus to be dropped off at my start point as see my wife and daughter.
From the time I stepped off the bus until it was all over seemed like a total blur, something so surreal. I am just this bloke that lives in Radlett and sits on his computer all day yet the amount of people who braved the rain and gave up their time to see me was incredible. My writing skills are not good enough to explain everything. The crowd were incredible and for those 350 meters I wasn't a bowel transplant patient any more I was just me. I know how lucky I was to have been selected, there are plenty who didn't get chosen and deserved to. Perhaps I was even a little blase about it all in the build up but the memory will live with me for ever.
My moment to shine is now over and life has returned to normal. My on going bowel transplant road still has some speed bumps in it. Mr Stoma has picked up his pace again and output is rising but hopefully that will be back under control soon. I have started a new feeding regime trying to reduce the time I spend connected to a feed. This means that I down shots 3 times a day. Sadly not vodka shots but high nutritional content shots and I am on an extra strength enteral feed. So let's see what the next few days brings.
I doubt I will ever write a blog post like this again in my life but hey this one has been a blast.
If you'd like to see some photos, see my blog www.beingapatient.blogspot.com Till the next time
In this section
- Are Patients from Mars and Health Care Professionals from Venus? - Part 2
- Are Patients from Mars & Health Care Professionals from Venus? - Part 1
- Launch of Jobs At Home
- Watford Foodbank
- There's Only One Lloyd Doyley
- Social Enterprise – The Watford Cycle Hub
- Co-parenting – artificial insemination at home
- Social Enterprise – The Green Canteen
- Step Parent Rights