Nearly Five Years!

[AndrewB]

October 15th is my Five Year Anniversary and shortly after I have my check up. For those who have just had there op, things will get better, every month I noticed a difference. Now I can drink three pints of beer, sleep on my right hand side, generally know when I am about to get dumping syndrome and know what will upset my stomach. Sure I have a number of other symptoms but I can live with these and enjoy life to the full.

[margie1]

so pleased for you Andrew, you have done so well, I recently had my oesophagus removed and most of my stomach (August 7th) so my stomach is now a thin tube in my chest. I am struggling to eat most days I am sick I have acid I don't enjoy food any more I seem to rely on ensure drinks. and i still cant lie on my right side due to the op sorry for going on but I hope i get to where you are now all clear and eating better. wishing you all the best regards Marg

[annrobertshaw in reply to margie1]

It does get better. I'm 2years post op and have been back at work part time for a year now. You have to adapt to your changed body but don't let it stop you doing things. I went on holiday to Sri Lanka in the summer, I was quite nervous about whether I would cope but had a fantastic time. So keep going - you have to build up confidence as well as recover physically. Ann

[Hidden in reply to margie1]

Dear Margie

Eating can be a struggle and you are not alone in this. Do not worry about relying on the ensure - as long as you can tolerate the taste! If you can take in nutrition at this stage, your body will slowly adapt and you will be OK.

It may be that your 'stomach' is not clearing very well, and that the contents are 'backing up' and making you sick. If this continues, they will be able to consider whether giving the valve at the bottom of your stomach (pylorus sphincter) a stretch might help. Little and often is the key to taking in food, with the 'little' being slightly more important than 'often'.

The valve that would have stopped stomach acid coming up into your oesophagus is now gone. If you have little of your stomach left, its ability to make stomach acid will have been affected - you may find gaviscon brings a bit of relief. There is a possibility that you may be having bile - which is alkali rather than acid, and usually tastes really foul.

Your body has been through a lot, and it will be uncomfortable lying on your side for a while. Try gentle exercising and massage, as you judge comfortable for yourself. The body does heal in time.

It won't continue like this! It will improve, and the doctors should be able to improve things if they don't. Please make sure that you tell them exactly what is happening to you. The idea of this surgery is that you get through it and have a good quality of life afterwards and the doctors will be helping you to achieve that.

[margie1 in reply to Hidden]

Thank you for your reply, my oesophagus is gone too with my stomach stretched right up. I am pleased to hear that things will get better you have given me hope now, I feel sorry for my husband as we used to love going out to eat but even he does not go any more as i cannot eat, but hopefully soon we will be able to go again with me having smaller portions.

i saw a doctor last week but he only checked my scars etc he never asked about eating problems and i never said! I am seeing my oncologist tomorrow as i start chemo again on Friday so he may know, also i see the dietician on Thursday hopefully one of them can advice me.

Thank you again.

[Rowland]

So good to know things will get better, I am 3 months post op and have been getting very down about the dumping syndrome and the fact that I can't even enjoy a simple thing like having a lovely cup of tea. Hot drinks make the dumping worse and the taste is not the same, I know I am not being very patient and everyone says it does get better, but it seems like such a long hard slog at the moment.

Best wishes to everyone, Julie x

[AndrewB in reply to Rowland]

Be patient all of you! It WILL get better.

[Westoncromwell]

Congratulations Andrew,

Many thanks your input. I think it is very important for people to hear positive news as that enables them to get a correct perspective with regard to the ups as well as the downs.

It is my first anniversary tomorrow following the removal of my stomach after stage 2b t3m0N0 and so far all is tickety boo with no recurrence so far.

I , too have noticed the huge changes that have occurred over the last year covering general fitness, appetite and complications. Things have certainly got much better as time progresses and as you rightly said we learn to adapt our lifestyles so not to provoke such symptoms as dumping.

Best wishes

Brian

[Hidden]

Please check to see whether your hospitals have a specialist Upper GI dietician, and if so go and see them!

Sometimes the checkups are about surgery scars and only that aspect of healing. There comes a time when the surgery process is complete and your issues are much more about digestion and the kind of thing that gastroenterologists deal with.

If you have had this surgery you really do need to understand what is going on, so if you cannot get a specialist dietician, try asking for a gastroenterologist.

[spike3]

Hi all, I've just passed my five year "mot" after having an oesophagetomy (Ivor Lewis procedure) in 2007 and yes i have suffered all the points mentioned, however it does get better takes a little longer in some cases than others but just bear with it. on the point of "dumping" i still suffer from this but i generally get an early warning sign and then sit quiet for 10mins or so and take a sucrose lozenge but what i have found best is a small bottle of apple lucozade. (no connection Honest ) but i expect there are many of us out their who have their own remedies.So to everybody out there keep faith and live life as it should be. good luck. Brian

[Magdav]

Congratulations in advance. It's a great sense of acheivement reaching the 5 year milestone, I reached mine in January and held a party for everyone who'd supported my husband and me through the difficult months and years. Celebrate life and remember how precious every day is.

Best wishes, Maggie