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I am 42yrs old, married with 3 kids. Diagnosed with Crohns Disease (an incurable inflammatory bowel disease) aged 12 and have had 22 operations and my intestine failed 2years ago. Last October I underwent a small bowel transplant in Oxford. I was the 11th person to go through this procedure. Recovery may take up to a year but I am determined to lead a full life and will never let my issues get in the way.
For my story please go to www.beingapatient.blogspot.com. In hospital my wife continued to blog about the transplant, all those details on www.the-transplant-wife.blogspot.com. Both blogs are linked.
I hope that my experience can help any family that maybe going through similar difficulties.
Posted at 11:19am Tuesday 19th November 2013
Going back in to hospital doesn’t get easier just because you are a regular. If anything it gets even tougher because you know what is in store. I have just returned home after a ten day stretch and further surgery. As you would expect there is a blog post coming after my little journey but before that post that I wanted to write this particular article and share it with you. I take great pride in the fact that my care is very much a partnership between patient and healthcare professional. Empathy has been talked about as a key component in the partnership. In fact I have read many articles about the best doctors are those who show empathy to their patients. After much exploration though I struggled to find articles that talk about patients who can empathise with their doctors. We can debate why this is the case for ages but for me perhaps one reason is that we often choose to take for granted the work that our HCPs do in helping us. Whilst we all want collaboration and partnership maybe that doesn’t always extend to a real understanding of what the medics go through. I think that I am just as guilty as others in this department. That was until this particular in-patient stay. The day before I went in to hospital my surgeon and I had a very open telephone call about the surgery. Nothing unusual there except I do remember thinking that he being even more cautious than normal and very specific about each individual point and potential consequence. I knew that post-transplant surgery is inevitably more complex than pre-transplant so again I sort of shrugged it off. Arriving in hospital something didn’t feel quite right. Not about my health but about the atmosphere on the ward and the way he spoke to me. Again I was told that he would do absolutely nothing to put me in jeopardy or take any risks whatsoever. I then asked a question and all the answers to the other questions in my head became obvious. Tragically an incredibly brave fellow bowel transplant patient had passed away a few days earlier. It hits all us bowel transplant patients very hard when one of the family doesn’t make it. You see, because there are so few of us we are a family. We share the successes and collectively feel the pain. That family feeling doesn’t though just apply to fellow patients. Right in front of my eyes I was seeing the pain and upset felt by the transplant team and my surgeon. Our surgeon. Nothing that anyone could have done could have prevented this tragedy. This patient was just the bravest person you could ever wish to meet. There standing in front of me was a person who not only felt his own pain but felt the pain of every single one of us and also the pain that this patient’s family were going through. He was devastated. I tried to explain that we all know the deal when we go through this surgery. We know the risks. We also know that he cannot be at our bedside 24hrs a day. I told him that he also has a family and a life and that there is no other person or surgeon that we would want in our corner than him. Those were not empty words they were the truth. I mean it, we all mean it – he is simply the best. His response was astounding. So much so that I am trying to write it down for you as close to word for word as I can. - My family understand that I need to be here for you all. I have dedicated my life to you and I want to and need to be there for you every single minute of the day. It is my responsibility to look after you and to care for you. I feel the pain you feel and when someone passes away I have to deal with my own demons and try and find a way of dealing with it for all you!
Posted at 9:34pm Tuesday 8th October 2013
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.
Posted at 5:27pm Wednesday 21st August 2013
I thought that it was time I wrote down a summary of where my life was in bowel transplant land. In doing that I realised that my role as a patient was changing. Was that down to me or down actually to the changing nature of the NHS here in the UK? I will let you decide. A warning this is a long post So with a backdrop of life being so much better than it was prior to my transplant this is my current daily and weekly schedule.
Posted at 6:42pm Wednesday 22nd May 2013
The British Medical Journal just came out with a heading that should have all patient’s jumping for joy - Let the patient revolution begin. As one of those patients who talks tirelessly about how important the role of the patient is in healthcare I was definitely one of those smiling when I heard about the article. But then I started to think a little bit more about things. A thought that hadn’t entered my head for a very long time suddenly found itself front and centre. What if a patient just wants to be a patient? Actually what if a patient just needs to be a patient? Is that still ok? In my own bowel transplant journey this week I felt like a patient who needed some help as opposed to an e-patient or the term I always prefer to be described as an i-patient (meaning interactive in all aspects of my health care). I actually felt that it was ok to be passive and turn to my medical team for help and support as opposed to constantly wanting to be part of every decision as well as striving to help find the answers. Having started treatment for the bile mal-absorption I then underwent a CT scan to see if I had developed a hernia at the site of my stoma and where I previously had one. The results came back pretty quick to rule out a returning hernia so that was positive. From CT I then spent the day back at the John Radcliffe Hospital doing a great impression of a blocked drain that was having Dynarod drain cleaners shoved in from both ends to check for blockages. Fortunately I wasn’t awake for most of the day. Sedation in my view is not a luxury but a necessity and fortunately there was no resistance put up by the doctor. Once sedated my day comprised of a colonoscopy and endoscopy with a balloon dilation and biopsies taken for good measure. The purpose of all of this was blockage at the join of where my new transplant bowel is joined to my own bowel. This area is known as the ileo-colonic section. I am still waiting for a formal result from this day’s events but it did leave me not only feeling a little rough and sore but also a tad vulnerable again. I suddenly felt that I needed someone (in my case my surgeon) to take complete charge and help sort things out. That is what he is doing and within 24hrs I had started to receive text messages saying that he was looking in to everything. I am back in Oxford twice next week so should have some answers by then. What this week has brought home is that no matter how interactive or how positive you are, as a patient there are times when you really do simply need to be a patient. I am experiencing some ongoing issues with joint pains – bizarrely my hands, feet and back seem to lock the moment I stretch them out in any way. The suspicion is that my bone density levels are poor and possible effects of the tacromilus anti-rejection medications but we will get to the bottom of it over the coming week or two. No matter what type of patient I am my faith and trust in my medical team has never wavered. The question that I am still grappling with is whether there really is a patient revolution going on? Has technology and especially social media simply made patients more engaged and empowered? Has that has created a completely different dynamic in how healthcare gets delivered? This may well be true as is the undoubted fact that health self-management is gaining enormous traction especially with patients who have long term conditions. In that area I will just tease you a little with a new self-management hub that will launch soon. Watch out for crowdhealth – no website yet but there will be soon and it looks cracking. I’m all in favour of patient power. This slideshare really gives you an insight in to what it is all about. I do believe that patients need to take more active role in how they manage their health but sometimes there is no substitute for just wanting your doctor to look after you. Till next time x
Posted at 8:42am Tuesday 7th May 2013
Posted at 7:18pm Friday 15th March 2013
My journey has a bowel transplant patient has taken me off in a number of directions over the last couple of weeks. Some have been great some not so good but again all paths lad back to The Churchill Hospital in Oxford and the transplant unit and my surrogate family. The route to this particular visit has been interesting though and as I sit in room 11 having just ordered a take away pizza (sorry no free advertising of any pizza chains on this blog that is unless free pizzas are on offer) for some hot food at a decent time I thought that I would tell you about the latest instalment of being a patient, bowel transplant style.
Posted at 3:12pm Monday 25th February 2013
I have tried hard this week to get my head out of bowel transplant mode and in to the space reserved for “rest of my life.” I just figured that with my head still spinning with so many things it was time for a mental clear out, a kind of spring clean of the mind. As I write this I have visions of a mini me with duster and polish sitting inside my head polishing lots of bits until they are all shiny. Just hope mini me doesn’t drop anything, that is if there is anything to actually drop.
Posted at 4:24pm Sunday 10th February 2013
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.
Posted at 11:09am Monday 28th January 2013
Sunday, 27 January 2013
Posted at 5:57pm Wednesday 9th January 2013
As the clock chimes midnight it is out with the old and in with the new except as a patient that one chime doesn’t actually make a difference does it? Or am I wrong? The turn of the year gives you a chance to set new goals, make new plans and start up new things but the one thing that doesn’t change is being a patient. Does that mean your mindset has to stay the same though – I think not! My Christmas was a bit like santa’s relationship with chimneys – lots of ups and downs. I picked up what I assume was a virus and ended up back in hospital for a few days. With me a virus seems to always lead to dehydration and with my kidney function going off quicker than a turkey left out of the fridge I soon found myself on antibiotics, a drip and with an abscess on my leg from all my injecting that has now turned in to a lovely great big hole. All of this and I just wanted to be out ahead of celebrations that had been planned. Frustratingly I missed two major deadlines, my daughter’s 13th birthday and my 21st anniversary but I did get out in time to share New Years Eve with my wife. I also managed to be around for my daughter’s bat mitzvah & disco – although not eating for 2 days to ensure I could make it through the disco was an interesting challenge. I then managed to appropriately embarrass her with my speech, which I thought sounded cool, it contained a twitter hashtag, references to facebook and everything else teenagers use these days. Perhaps it was the fact that I have more twitter followers that upset my little lady. I hadn’t really appreciated the effect that my back and forth to hospital was having on the kids until this holiday. I stupidly assumed that they took it all in their stride and that it was almost part of life yet this time it really hit them hard. I saw the odd posts that they put up, heard the reactions on the phone and then saw the look in their eyes and it really made me realise the massive affect this all has on them. I think that some of this was due to the fact that I hadn’t been an inpatient for a few weeks so they got used to having me at home and some of it was the fact that I went for routine bloods and ended up staying in so it was unprepared. Finally there was the time of the year so it was no wonder the kids and my wife got very down over the whole thing. So you see the journey of being a patient or the trials and tribulations of being the loved one of a patient doesn’t alter based on the change of a number. In essence those elements are out of your control, what can change though is what you wish for and what you are going to do to try and make those wishes come true. For 2013 what will I be doing to make my wishes come true? My biggest wish is for stability in our lives and for my wife and kids to have a year free of the upheaval that has been there for so long. What can I do to make these things happen? In simple terms I can make sure that I do everything possible to give them the normality they deserve when the times are good and just hope that when we have a few blips they remember many more good things than bad. To deliver on my wish though involves so many things some in my control and some not. I guess that herein lies so many lessons for so many of us. These are my thoughts for what they are worth. I can’t guarantee that I can follow everyone though so I would welcome your thoughts.