Are there any OC patients who after surgery where left with no oesophagus & only a quarter of there stomach, now feeding via tube to stomach

[Argon]

A long but interesting story

[Hidden]

Myself I have had all oesophagus removed and 3rd of stomach removed but no feeding tube.I dont have probs but dont eat enough but enough to keep me going.I have heard of people in your position though.Guess that answer doesnt help?

[Argon in reply to Hidden]

HI Griff thanks for your response, I'm sorry I did not make it clear but due to surgery issues I was not re-connected and probably never will be . And I was wondering how common this situation is, if you know anyone I would be interested in talking to then, This is the first forum I'v joined and still trying to understand how it works but i will post again

Regards Argon

[Hidden]

Yes! It is quite often the case that some of the stomach is removed during surgery as well as the oesophagus, and sometimes quite a lot of the stomach is removed. As for feeding tubes, there is a lot of experience out there, most of it soon after surgery.

It sounds quite dramatic when you tell people about it, and have to cope with their reactions; and at the hospital you sometimes do not get treated at the same time as others who have a similar operation.

If you like the idea of having a chinwag with somebody who has been down the same road before, you will be very welcome to come to our meeting at Guy's hospital on Saturday 26 May, but there may be other meetings nearer you before then.

[Argon in reply to Hidden]

Hi Alan Thanks for your prompted response, I'm new to any forum and I'm still working out how it works. Is this replay personal to you or does everyone see my it?. Due to surgery issues I was not re-connected and probably never will be . And I was wondering how common this situation is, if you know anyone I would be interested in talking to then.

Regards

Argon

[Hidden in reply to Argon]

There are, at the last count, 143 people signed up to this 'community' and I believe that virtually all of them have had serious surgery on their oesophagus/stomach. The comments can be read by all 143, and other visitors to this 'community' unless you create a blog that is 'closed'. You can send a private message to me, or anybody else, by either going to the 'Messages' section towards the right hand side of the dark blue bar across the top, or clicking on the blue wording of a person's nickname.

The OPA also run a helpline 0121 704 9860 and a website opa.org.uk

[juliamac]

Hi Argon

I had my op 5 years ago. Due to complications I was in Intensive Care for weeks after. I was very slow to get back to eating and kept losing weight so I was sent home with a tube which I then had for 5 months until I was keeping food down and was a good weight. Tube feeds allowed me to progress with eating at my own pace but I did have a few dramas..as you would expect...and it kept me busy seeing the dietician and the suppliers of feeds, cleaning it, looking after the dressing...It is quite a job managing it all.

Big milestones were when I only needed night feeds and the first time I had a little holiday with the tube in! Freedom!!

I don't know if any of this relates to your experience at all. Whatever the case

I hope you have good support around you.

Good luck and good wishes

Julia

[Argon in reply to juliamac]

Hi Julia thanks for the reply. My oesophagus has not been reconnected therefore all feed and water is by the tube and I’m on it for 16 hours a day but coping quite well. Leaking is my main problem what type of connection did you use? I have a tube through the wall of stomach with a balloon inside to prevent in pulling out

[juliamac in reply to Argon]

Hi Stuart

16 hours a day is a long shift! My tube went into the jejunem (I can't even spell it now I think..!) I do remember the specialist staff who helped me and were always at the end of a phone line and ready to try out different ways of fixing the tube, different dressings etc. when my skin reacted badly or the tube managed to eject itself.

It sounds like you have got a very big project to manage there!

I hope you can talk to and see the experts on your team whenever you need to.

I wish I had something more useful to share with you.

Sending you lots of good wishes and admiration for dealing with it all.

Julia

[JohnS1]

Hi Argon,

Sorry I'm confused. When you say you were not re-connected do you mean that you are not eating via the mouth and just via the feeding tube now. If this is so you are somewhat unique in my 10+ year experience. If the feeding tube is just to top-up on normal eating this is common as already pointed out by other helpful contributers.

If you are tube fed only please let us know then we can search for help for you.

Regards JohnS

[Argon]

Complications with the operation 18 months ago has left me with my oesophagus coming out from my neck, this now has a malignant tumour on the stump end and is currently deemed to dangerous for further surgery. I now feed and hydrate via a tube to my stomach. I will explain in a little more detail soon

Stuart Argon