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being a bowel transplant patient doesn't mean life can't go on

I have to start this particular bowel transplant blog with a birthday hug. Who for, well me actually. Why? Well at the precise time I post this blog I was, two years, ago coming out of theatre after my transplant surgery. Who was the first person to remember? No not me but my incredible surgeon who sent me a congratulatory text. You can’t ask for better doctor-patient engagement than that can you?

I have just returned from a really interesting trip to the United States. Utah and then California in fact. Utah was a brief stopover to have a meeting and then I was on to California where I had the privilege of giving the key note opening speech at Stanford Medical School’s MedicineX conference. Together with my transplant dietician Marion O’Connor we discussed how the use of digital technologies has transformed patient – doctor engagement within the bowel transplant programme. We discussed how the use of basic technologies starting with email and text moving through to social media, blogging and finally skype clinics (yes any NHS managers reading this – Skype clinics do work and patients love them) lead to better collaboration, better engagement, better compliance and better relationships between patient and doctor but also patient to patient.

More on the Stanford experience in a minute. (If you are that inpatient I will let you scroll down now) I wanted to talk about an interesting dynamic that has happened recently in my care and the impact it is still having on me as the patient.

As you know I have continued to experience a plethora of symptoms ranging from basic Usain Bolt style runs to the toilet; extreme pain on the right hand side of my stomach; various joints locking at regular intervals and without warning leading to events such as the weekly ritual known as dropping the drinking glasses I am holding because the pain in the hand is so great and finally there is nightly chuck up. In fact I have got so good at the nightly vomiting that I don’t now even wake anyone up.

So with those symptoms I was referred to a brilliant gastroenterologist, Dr Satish Keshev. After scopes both up and down (you get the drift), an MRE and a pill capsule test he was certain that there was potential Crohn’s activity. Now as a bowel transplant patient that really is your worst nightmare hearing those words again. However as I am on heavy immunosuppressants the choice of medications available are very limiting. Why? Well because the risk of infection is heighted being a transplant patient. So his view was resect that area as the same time as doing the other surgery. And with that news he asked me to talk to my surgeon and he would do the same.

A couple of days later I speak with Anil and the words “there is no way it is Crohn’s” come loud and clear in my ear. I did manage to get the word “but” before he then went on to tell my why it couldn’t be Crohn’s and how he needed more proof. We then went on to discuss what potential surgery was needed. This bit was relatively simple. Remove the gall bladder (stones that can’t be lasered) and connect the transplanted bowel up to the top part of the stomach so that everything drains directly in to the new bowel. Pace maker I hear you cry! Well yes, it is conceivably still on the table but I have heard nothing. In true NHS administration not one single note, email, phone call (now I am being stupid) has happened so who knows. Option B was always the drainage process so that has just become option 1a.

And so I went off to America. Now this is where your mind really can play a role when you are a patient coping with long term chronic illness. (In case you are interested I found this fascinating paper by academics in to improving care for people with long term conditions, well worth a read. I also attended a Future of Health conference on it by the NHS – again worth a read or a better summary was posted by Anya de longh on her blog) You see in my mind I already focused on the fact that there may well be Crohn’s and what does that mean. Anil had told me why he couldn’t do a resection anyhow. If there was any Crohn’s then it was in my jejunum.

When I was transplanted a small bit of my native jej was left in case of total rejection then that was where the bowel would be removed and a stoma created. So there I was on the plane and those two little words kept playing over and over again. The fact that other surgery was involved didn’t matter. Patients often hang on every word that the specialist says to them. I thought that I had gone through that particular challenge yet here was a specialist who I hardly knew planting something in my brain that my surgeon categorically dismissed. Crikey if ever there was a connection between gut and brain this was the perfect demonstration.

Now let me move on to Stanford. It was funny, I arrived and turned up for tech rehearsal where I met a fellow patient known on twitter as @Hospitalpatient. One of the first things he asked me was how I coped with the long distance travel. And you know what. I never really thought about it. I just did it. Sure I took with a huge amount medications with me. I had my backpack for fluids, my tablets and the odd piece of clothing squeezed in the corner besides the drugs. I prepared properly and made sure I had every eventuality covered but in the end I just did it. My determination was that no one and no transplant was getting in the way. Too often as patients we get scared, we can worry about so much that in the end we worry about things we don’t have to worry about. Actually we are very powerful people. So if you have the opportunity to travel and your doctor says go then GO – what are you waiting for?

The conference was truly inspiring. Larry Chu was the organising doctor and he thought of everything. The rooms were packed with academics, practising physicians, technology gurus, venture capitalists and most importantly at least 10% of the audience were fellow patients. Nick Dawson whom I now refer to as a Tubby Tom Cruise (Sorry Nick) together with his e-patient executive team of Liza Bernstein, Britt Johnson, Sarah Kucharski, Sean Ahrens and Hugo Campos truly made patients feel a vital component of every session. I learnt about participatory medicine in a master class by the genius of Susannah Fox from Pew Institute, heard about google glass and even got to wear it. On this occasion it is Larry doing the modelling.

So with that I will end this latest post. A very good friend of mine and brilliant writer Wendy Lee told me that you should never mix messages and threads in a blog post. Well I broke her rule – sorry Wendy but I had so much to tell.

In the end it boils down to this. My new life is two years old. Yes I still have ongoing issues and yes I will require more surgery. I swapped one set of problems for a very different set. But I have my wonderful family and hey, this bloke from a village called Radlett in Hertfordshire England got to give a key note speech at Stanford University. Not many can say that.

Till next time


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