Hi everyone, My name is Suzy and I'm new to the group..it's been 9 years since my op and i'm still learning ..is there anyone who still expieriences difficulties after many years? ...
Hi Suzy you are not alone I have just celebrated 10 years I had total gastrectomy and bottom part of my oesoghagus. I experience difficulties and honestly never had a good day. I don't weigh a lot and cant gain weight. I have got used to it but not been easy. Good Luck to you keep positive and strong!
Hi Cherry, Wow 10 years thats amazing.. well done to you. I found it to be a constant struggle day after day and like you it's not been easy..i don't weigh a lot myself and i have found it very wearing to keep the weight i have and like you i never gain weight..it's certainly been a learning curb and one that i have had to learn alone as everyday brought something new to deal with and no one who understood, if i'm honest i would say that i never thought i would make it through the first year..but here i am 9 yrs later with supportive family and friends that keep me strong and happy..Thank you for taking the time to reply..also wishing you well in the future..stay strong and possitive! X
I think the idea of a 'healthy weight' can be a bit of a burden, especially when other people (including medical people without specific knowledge of the after-effects of this surgery) start to pronounce on what should, or should not, be healthy. Keeping up nutrition is more important, and keeping an eye on mineral and vitamin levels. Keeping a consistent weight is also a desirable thing, but being able to regain weight after a temporary weight loss will always be a struggle, and it is not something that is readily controlled any more because the shortened digestive system simply cannot cope with the normal peaks and troughs of life so well. And then it is also a matter of trying to avoid the digestive problems like constipation, diarrhoea and insulin spikes.
It is surprising how many things are controlled by the stomach that we take for granted until it they are not there any more.
Welcome to our most exclusive club.
Over the 26 years since my Ivor Lewis I have come to accept the sad reality that the many and varied side effects arising from the surgery that saved our lives, are to all intents and purposes permanent.
However, in a vivid demonstration of the adaptability and tenacity of the human body and mind all of those impediments can be mitigated, if not overcome entirely, with learning, skill and determination.
This web site is a compendium of the tips and tricks developed by the members via a painful process of mostly trial and error. I urge you to read through all the hundreds of back-pages where you will stumble upon things that ring a bell .......'wow that's just like me ....I'll give that a go......so I'm not alone'
Unfortunately the medical profession has little to contribute in this regard. Why is that? The paramount rule of medicine is "first do no harm". This dictum
results in an all pervasive conservatism; an unwillingness to try out any remedy or espouse any theory that is not tried,tested and proven many times over and which, hopefully has stood the test of time. This inbuilt reserve precludes early adoption, whilst we guinea pigs have to go on suffering, but it does, in the long-run, keep us safer by protecting us from fad, fashion and downright quackery.
Did you know that our procedure was pioneered experimentally in dogs over an hundred years ago?
But it is only now becoming routine, expanding in response to the greater incidence of cancer and because the shear feasibility has eased as supporting technologies, such as anesthesia, have evolved.
Although there is nothing like first-hand experience I don't expect to ever encounter a surgeon in theatre who has had a gastro-oesophagectomy!
There are other factors relevant here. With a five-year survival rate of only 15%
there simply aren't enough of us around to justify any greater investment of resources. And that small survivorship does not offer a sufficient pool for large scale research - as a generalization statistical validity cannot be achieved in a double-blind trial with a cohort of less than 1500 subjects. Somewhat more than us.
None of the foregoing is an excuse for gloom and despondency. On the contrary it is a cause for celebration.
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