If I am to be totally honest the last week or so since my last post has been a bit tough in my bowel transplant world. It felt a little like watching my football team QPR last season. Hoping for a run of success but sadly each match ending in defeat and subsequent supporter frustration. However unlike QPR who got relegated, my week did end on a fantastic note with a speech at the global Intestinal Transplant Symposium in Oxford.
I don’t usually get fed up but I have to admit I have let the daily grind of symptoms cloud the bigger picture in my ongoing transplant journey. You see the big picture is pretty good. The bowel is functioning well, the last endoscopy showed that. When I used to have my weekly scopes all we used to look for on the screen was how healthy my villi were.
Yes that really is the inside of my transplanted bowel!!
For a long time that was all that mattered as I started to eat, drink and get back to some semblance of normality. Although what is normal these days? Don’t worry I won’t go there – that is definitely a question for another day. So as attention turned away from beautiful villi and life has moved on I find myself in a situation now a little bit like when I used to have Crohn’s if I am honest. I can’t seem to stop vomiting at the end of most days and as I eat so I visit my dear old friend the toilet. That coupled with the fact that my stomach makes more noises than 18,000 fans did at a QPR home game. The combination of these elements has, if I am honest, got to me. It is the first time in a little while that frustration has crept in to my head. Instead of focusing on big picture stuff this daily minutiae has taken over.
I had a very frank an open chat with my surgeon, Anil Vaidya over these issues. For me it has always been about knowing if there is an action plan we can put in place. I am incredibly lucky that my medical team understand that and so we can talk openly about the options. I have never minded bad news if I knew there was something we could do about it. Likewise I have never tended to look about the “what might have been” scenario expect for this one nagging doubt. You see way back when my surgeon talked of doing a stomach transplant as well as the small bowel. In truth my wife and I also felt that it might be necessary but it didn’t happen so no point in looking back. This time though Anil did talk about the fact that perhaps with hindsight we should have found a way of proceeding.
So having now had my 3rd botox injection in to the pyloris muscle in the stomach, the expectation from my side was that it would prevent vomiting for up to 3 months. I am now 10 days on and have been sick three times so what does that mean? Next steps could be a gastric pacemaker but we will have to discuss and see. If you fancy seeing what this does or just have a warped sense of humour you should check out this great video. The bigger cause of my darker mood though was the fact that I can’t seem to eat without running if you get my drift. And no I don’t mean that food stimulates my desire to put on the latest Nike trainers and go for a jog. Although if Nike want to sponsor me I could give that a try. The last time I offered my services as a bill board was to Hugo Boss over a suit. I am not holding my breath for the call. No; food seems to go in and come out again a little too quickly for my liking. Here is my next call for sponsorship – Andrex, your soft and comfy range is so much better than Tesco value packs when it comes to toilet roll.
All of this is not just a waste of good food but is actually pretty debilitating as all IBD patients will testify. The problem for me lies in the continual issue of mal-absorption and bacterial overgrowth neither of whom are yet under control but both of which are being treated. Honestly I have complete faith in the team but I would be a liar if I said that it hasn’t been a hard period to get through.
It hasn’t always been doom and gloom I promise and believe me I am not sitting here crying in to my pillow. Now that would be a waste of a day. Whilst sitting on the loo I have been doing a bit of writing and was privileged to have been asked to write an article for The Times this week. It was part of a special on digital technology in health. It has become an increasing passion of mine; yes I know I bore you all to death with my constant tweets etc but hey it keeps me happy. I owe a big thank you to a friend, Bex from School For Social Entrepreneurs who put me forward for this. Here is the article. I would welcome any of your comments.
As I mentioned earlier this week did end on a high for me.
I had the huge honour of being asked to present at the symposium I mentioned above. Twenty Imodium tablets down and I left home at 7.30am to arrive on time at the town hall in Oxford. It is a grand building that to be honest did nothing to ease the nerves. I am not sure why I was worried I mean I have spoken on many occasions before and it has never bothered me. I think the fact that I was speaking to a room full of surgeons and medical professionals didn’t help but my biggest fear factor was of not wanting to let down any of my team at Oxford. Thankfully I had my brilliant dietician Marion O’Connor to guide me through proceedings. Seeing my name as part of the programme was very humbling and made me determined not to let them down.
I’m told that it went well and certainly the reaction was far greater than I could have hoped. It has been recorded and I will share it with you as soon as I get a copy so that you can judge for yourself. It was the topic though that meant so much to me. The session was entitled “Who decides and when?” In my talk I presented the argument that if you are going to go through such a major life threatening surgery such as a bowel transplant then it should be the patient that decides. What do you think? I then went on to discuss the role that digital technology and especially social media can play in empowering patients to help make informed decisions.
It is without doubt something for a tweetchat so I will set that up soon and we can debate this further.
And so my week has ended with my son’s 15th birthday, twenty toilet visits in two days and only one vomit (what’s one between friends). It has though ended with my smile coming back and my sense of frustration parked to one side for a little while. Whoever said that being a patient is easy?
Till next time