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What do Space Mountain & bowel transplant have in common?
This last week seems to have typified my journey through bowel transplant. When I was told that having a bowel transplant was swapping one set of problems for another I knew what I was being told but never really appreciated what that actually meant. I went in to the surgery knowing the risks and complications but at that time I hadn’t eaten for 3 years and had intestinal failureso for me there was no choice.
Then I started to recover, get over infections and a few blips and things settle in to a more positive pattern but the stark reality is that there is something that happens every single day that means your mind is on a continual rollercoaster. I guess that is why so many IBD patients call it an invisible illness. My last blood markers were good and my surgeon is happy with me. That should be enough shouldn’t it? You have your bowel transplant and your transplant surgeon gives you a thumbs up but that “high” doesn’t last that long. Nausea has been a big problem that I haven’t been able to rectify. To me only being sick 3 or 4 times a week is good but actually when it happens at 2am/3am/4am then your brain gets scrambled and your mood changes from the “high” to a “low.” If you then thrown in occasional accidents then the “low” can emotionally be very “low” and that can be hard to explain.
I went back to see a great gastro doctor, who I call Dr Botox this week, to see what the next thinks the next steps should be. Another botox injectionis on the cards for March and in the meantime I am going to have another gastric emptying study. Dr Botox believes that there is an underlying dysmotilityproblem and that actually may not ever be solved and therefore it may be about managing the symptoms better. And boom the rollercoaster in my brain starts up again. It would be cool if it was Disney’s Space Mountain sadly it’s more like Michael’s Mumbo Jumbo.
Away from my bowel transplant life is definitely been gathering pace at a good rate. I have been incredibly lucky to have struck up friendships with the founders of the Centre For Patient Leadershipand I am now a co facilitator. I will be involved with 5 programmes over the coming few weeks so all of a sudden my brain has had to go out of 1stgear and straight in to 5th gear but that’s a fun ride to go on. I’m going to be doing an interview with David and Mark, the founders’ soon so watch this space.
Next week I have the privilege of being the opening speaker at the Scottish Health Council on its E-participation in the NHS conference. I have re written my presentation 3 times so far. I’m not sure why as usually I can write a presentation relatively easily. This one though has definitely challenged the old grey matter as it is purely to NHS managers and I want to get the tone write. Then there is the debate on what to wear. I’m going for the smart casual look or as my daughter would say “at least you made an effort” look. I figured suited and booted just isn’t me – unless of course anyone from Hugo Boss is reading this and is looking for a middle aged bloke with no six pack and hair going grey then I’m definitely your man.
I appreciate that this bowel transplant post has been a little disjointed and a bit all over the place. My friend and writer & Crohnie Wendy Lee – you should read her blog will definitely laugh at some of my English but I write as I feel and my head feels a little all over the place. This think that has helped me snap back in to place a little is this video. Please have a watch. The video has been done by my son Nathan without me knowing that he was doing it. What it made me realise yet again, that coping with a bowel transplant and everything that goes with it doesn’t just affect me but it affects those closest to you as well. All they crave is a bit of normality and I owe them that. Oh and if you fancy seeing more of his videos then check out his YouTube channel or follow him @nathansgotfish
Till next time.
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