Oesophageal tumour

Hi, This is extremely difficult to explain, I am a 54 year old male who has always been very positive, looked after myself, eaten healthily & exercised regularly & never really been over weight (11st 11lbs height 5` 8") I`ve had health issues but nothing like what I`ve gone through in the past few years.

It all started in July 2016 when I had an operation called an Ivor Lewis Oesphogectomy which involved the removal of a large non-cancerous tumour from my oesophagus, by stretching my stomach up to create a new link between my throat & my stomach. Whilst the operation was initially successful after 5 days I became very ill & following investigations it was thought that as the tumour was very high up near my voice box, the blood circulation wasn't sufficient & caused the join to die. Unfortunately this caused 2/3rds of my stomach to be burnt back & other complications including damage to a lung due to leakage of necrotic fluid. I had an immediate emergency operation to basically save me which involved tying off what was left of my stomach & inserting a jejunostomy peg feed for liquid food & drink. My remaining oesophogus was pulled out externally to my throat where a stoma drained my nose & saliva. I ended up being in ICU for 11 days & spent 2 months recovering in hospital. I only realised afterwards how ill I was although this was more obvious physically as I also lost another 2st in weight. When I was released I was told to get as fit as I could in readiness for another major operation in order to re-connect me. I was also diagnosed with depression but this was to be expected having gone through what I had at the time.

After recovering fairly well, considering the circumstances, nine months later in April 2017 I was deemed fit enough to undergo an operation called a Colonic interposition which involved transplanting approx 14" of my large intestine to provide me essentially with a new working oesophagus. The operation again went well however unusually whilst the lower join healed the upper join failed to. I spent another 2 months in hospital waiting for it to heal but it wouldn't so the hospital made the decision to discharge me home with my peg feed & stoma yet again. I was closely monitored & underwent regular bi-weekly endoscopic stretches (dilations) of the new oesophagus until by the September the join eventually healed. From that time I would have the stretches but I also carried out daily dilations manually by swallowing a rubber dilator (2 feet long) I cannot say this was very pleasant but having gotten this far it was important to maintain what my consultant requested in order that I may one day eat & drink again.

Life suddenly got much better as for the first time in 18 months I began to eat & drink again. No it wasn't a case of back to normal by any means as I could only really manage soups, etc but I gradually moved onto to soft food like mashed potatoe, etc. I cannot begin to explain how wonderful it was to be able to taste & swallow again except to say it was like having my body back again after being ravaged by major surgeries, so it was truly fantastic. However it was only the beginning of a long rocky road to what I thought was my full recovery. Throughout the next few months things seemed to improve if only very slowly. Eating & drinking was difficult but I felt I was getting there even though I still had to have the hospital dilations & do the daily dilations myself. I was also still having to insert water & use the peg feed for nutrician something which the consultant said was important as back up as I could not eat/drink enough to fully sustain my 9st body.

However I began to get chest infections which caused me problems trying to eat & drink. These became more & more frequent & I was getting more & more frustrated as it resulted in my eating becoming harder. It culminated in May when I suddenly had a bout of gastroenteritis. This proved to be horrendous as not only could I not tolerate any food/drink orally but also nothing via my peg feed. I spent 9 whole days in bed gradually deteriorating & can only say it was probably the worst I had ever felt in my life, including the previous surgeries. I lost another stone in weight, was delirious at times due to dehydration & fell into a further deeper depression. Amazingly I wasn't hospitalised & really don't understand why I wasn't at the time but my recollection of that time is still hazy & no doubt I probably argued that I didn't want to go back in anyway. I should add very importantly that during this episode it the first time I was physically sick (in 2 1/2 years since it all began) so it was the first time as such I was sick using my new oesophagus. Being sick normally is quite distressing to an able bodied person anyway but the physical action for me was both painful & shocking also as I really didn't know what was happening to me internally as it wracked my body further. After recovering a few days later I had a swelling on my throat externally on the location of my operation scar which basically swelled to the size of a golf ball. This eventually burst & left a small hole in my throat but even at that point I didn't realise what had happened. It was only when I tried to swallow some water that it poured out of the hole in my throat. I was in a complete state of shock obviously with the thought that there was something seriously wrong. I went back to the hospital & scans revealed that my oesophagus transplant had basically shrivelled up & effectively died due to lack of blood circulation (or other?) & the upper join of the had ruptured & so any fluid would discharge from the hole in my throat. They also found a fistula (a hole or link) from the oesphogus & my lung.

I cannot tell you how devastated I was at hearing this news. It was a full year & a month on from having the operation & it had sadly ended this way. The consultants are at a loss as to explain why this happened except to say that my situation is unique to them & suffice to say that a medical paper is now being written about my unfortunate situation as we speak. Having lived with the situation now for the past 6 months, they decided that nothing could be done directly without making things worse. I have recently been back to my consultant who has informed me they are looking at possibly carrying out another major operation in March 2019 which is called a Jump Graft, using a piece of my small intestine this time, in order to reconnect me. Unfortunately they have only carried out this operation on patients requiring short lengths in the UK but apparently they have done the longer grafts in Australia & America but I don't know how successful they have been. I am waiting for further information on these nearer the time as the team of consultants is put together. However, again, unfortunately my consultant has advised that due to a possible issue with my immune system they are not very confident that the operation will work. (10% chance it will work) So in the meantime I am coming to terms with the distinct reality that I may have to rely on my peg feed & stomas for the rest of my life. Not a very positive outlook & it would seem with no way back.

What I am hoping from posting this story is that someone somewhere will either have gone through what I have or knows somebody that can help me come to terms with my situation. After having been through all this only to be told that any operation is unlikely to improve my situation has left me feeling in despair & suicidal at times & I seem to have nobody to talk to that understands.

That is my story.