Bowel transplant phase two I knew from the age of 12 that anything to do with the bowel or rather my bowel wasn't going to be easy. Then 30 years later my bowel transplant comes along and bang I realised that everything else in the last 30 years WAS actually easy, well easy ish.
My wife, who writes so much better than me (gutted about that!) has filled you in on all the details and any street cred or dignity I may have had has definitely gone out of the window. My stoma and my backside have probably been talked about more in the last week than the start of the new X Factor series which began over here on Saturday. I guess though that is really what this blog is all about. Getting across exactly what my patient journey has been. Whether it is writing about crohns disease or my stoma reversal I just hope my experiences make others feel not so alone with what they go through.
Without doubt these last 10 days have been some of the toughest I have faced going through my bowel transplant journey. Why? I mean it was only a stoma reversal. True and yes they were hard physically for me but the real reason they were the toughest was seeing first hand the impact it had on my wonderful wife. You have all heard me waffle on about how lucky I am to have amazing family support and quite often I guess, not deliberately, I have taken it for granted well never again.(or at least not too often) And if I do and you hear or read about it then you have my permission to book a colonoscopy for me without sedation!!
Twice in the last ten days I thought I was gone. I'm not exaggerating and when one of the doctors tells you that it was lucky your wife was around then you realise things weren't great. My wife who, aside from being amazing, has coped brilliantly throughout all my illnesses but the expression on her face and the ashen look she had after I came round is something I cannot get out of my head. I could see how scared she was and that is something you never want your loved one to have to go through. It made me really understand how hard being a long term patient is on the ones we rely on the most. I know how lucky I am. I have you guys who support me constantly. I have an incredible family network as well as wonderful friends. In that split second everything hit me about how fragile life is and how much pain you put the ones that you care about most through. People have been wonderful and saying how inspirational I am but the truth is it everyone I have just mentioned (yes including you) who are the real stars and my wife and kids who are the most inspirational people I know.
The stoma reversal went well and I think my heamatoma is improving although it flipping well hurts and the next procedure to be done relates to my peg tube. Frustratingly I still need a feeding tube but the part of my peg tube that comes out of my belly is constantly blocking. I often have to bolus in my feed and that doesn't help so my surgeon will replace the front part of the tube with what is called a Mickey tube. This new tube will sit almost flat against my stomach, will still allow me to use it for feeding but won't dangle down the whole time. Hopefully that will be done this week and I should only have to go back to my second home for a day.
I guess I am now at the point where phase two comes in. The major part of my transplant has been done and those 5 words ( in case you forgot them "I can change your life") uttered by my surgeon nearly 18 months ago can actually happen. I'm not sure where this is all going to take me but it is going to be one heck of a ride. I didn't go through all of this to muck up my second chance. My hopes and ambitions may one day come true. Except probably the one where I see QPR lifting a trophy, but you never know. The term e-patient is one used far more commonly in other countries than here and means a number of different things. For me it is all about using my experiences to help others. To stimulate patient to patient interaction and to use social media in healthcare to give patients more of a voice and more of a say in their own journey but who knows where my own journey will take me.
What I do know is that I don't want my loved ones to have to experience again what they have just been through. Now back to the mundane stuff and my lunch time meds.
Tuesday, 7 August 20123.45pm I would regard myself as a "seasoned patient". I mean I've had Crohn's for 30 years and in relation to its treatment and surgeries I think I know the manual and getting from A-Z. Bowel transplantation well that is a whole new ball game. There are so many things to be conscious of on a daily basis and just when you think things are ticking along fine and you can start to relax something smacks you in the face.
I'm writing this in between ridiculously lengthy trips to the toilet. Sometimes it feels like I should put a bed, shower and kitchen in that room considering the time spent in there. You will recall that just before my torch bearing I had a bad week well those symptoms have returned. I have though learnt a bit more about my transplanted bowel since then. What I didn't realise that when you have a transplanted bowel the nerve endings that the bowel contains do not work straight after the transplant. In fact it takes a while for the nerves in the bowel to say hello to the nerve endings in the stomach and also to say hi to the nerve endings closer to your backside. You would think that in this day and age with mobile apps and blue tooth technology that a nerve to nerve connection would be simple.
I am reliably informed that nerve signals do connect at some stage relatively soon. For now though it means I am in quite a bit of pain. It feels like you need to go to the loo but there is nothing there. These symptoms seem to ramp up over a number of days whilst at the same time stoma output thickens significantly. I put in 3 or 4 litres of fluid at the same time to try and keep everything as hydrated as possible but you do start to feel a bit crap as the day progresses. At the moment I am trying to time my toilet runs against the Olympics schedule on telly. With GB doing pretty well (at least by our standards) I really don't want to be emptying stoma bags when there is the potential of a medal. What would be really good was if I could get in and out within the same time frame as a British Cyclist takes to win another gold. Yes I know that was a little patriotic but hey we don't often celebrate successes here. Oh and by the way Sir Chris Hoy has just won his 6th gold medal!
Tomorrow I am going back in to hospital at Oxford for some minor surgery and a stoma reversal. Of course I am delighted that the reversal is happening, it is absolutely a step forward. It is though being done for specific reasons. Firstly the dehydration issues that I continually drone on about haven't sorted themselves out and neither has the absorption problems. I am eating more now which is great but it is coming straight out in to my bag. For both problems to improve I need to use the length of my new transplanted bowel to help out. It does mean that checking on the bowel gets a bit harder. I guess it will go back to the old camera up the bum but hey us IBDers are used to that.
Ok, I started writing this at 3.35pm and it is now 6.35pm. About half that time has been spent in my "little cupboard" and it is time for me to disappear again so I am going to sign off. Will of course keep you posted over the next few days from life inside the Wytham Ward.
Oh one last think, our charity ride has now raised over £97,000. If you fancy joining us next year then watch this space. I'm going be there, come and join me...