I am now over 6 months from my operation ( 5/7 of my stomach & 50mm from my oesophagus) and do not seem to be improving. I feel sick most of the
time and now have difficulty sleeping. I wake at about 2am make a cup of tea (Red Bush) and a biscuit usually followed by some Gaviscon and usually get to sleep by 4am. I have tried the following antisickness pills without any improvement. Domperidone, Cyclizine, Maxolon & Buccastem.
I have lost a lot of weight – now down to 50kg.
I would welcome any advice. Is this normal at this time and can anyone suggest any other treatment ?
Written by
John34
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sorry to hear you're feeling poorly and I'm sure you'll get lots of input from everyone here. People used to tell me 6 months is so early in your recovery and only now at nearly 2 years do I understand what they mean. The op is massive, like being hit by a bus and it takes a long time to recover, heal and find it's "new normal". I too lost a huge amount of weight. Went down to 7.4 from 10 stone. Now at 8.2 after 2 years. I lost more weight in the first year and it frightened the life out of me too. I can only talk from my experiences but do wonder at the wisdom of having a biscuit in the night, are you then lying down? iI expect you know you have lost your sphincter muscle that stops food flowing back up? If you drink a large amount and eat then lie down you will indeed feel sick! I don't eat later than 2 hours before going to bed because of this. We all seem to need to use pillows or an electric bed to sleep with out head raised a little above our body. No one told me this in the hospital, the OPA were a great source of info. There's a section on here of hints and tips after surgery too. I used food supplements 2-3 times a day between small meals in order to put some weight on and its now 6 small meals/snacks per day. I take lanzaprole first thing daily too. It really is still "early days" for you, it's a big learning curve too but you're not alone with this, we have all come though this so lots of good wishes for an improvement for you. If you have a specialist nurse or you can phone the OPA, either might be helpfull to you too.
Charlie36 reply says it all. I naievely thought I would be ok after 9 months but 39 months post op still feel a bit nauseous & have bouts of reflux. It is something you just have to get used to but try not to worry too much and there is still a lot to enjoy with your new life. My weight returned to pre op level and I eat a lot of biscuits and cake something a lot of "normal" people can't do! Good luck and stay the course.
Yes Its how it is and very early in recovery.I am 13 months post op and still have probs although they are getting better day by day.I was suffering same as you around 6 months and noticed slight improvement around 9 months.remember though you are one of the lucky ones as got surgery and still alive to tell the tale!!!!
I can reassure you it will get better just have to ride with it.
I'm 7 months on and had all stomach and a part of the oesophagus removed.
I still feel a bit nauseous in the morning, can suffer from sleep problems and am down to 11 stone from 14.
i think the sleep thing is just the body being out of synch, nytol, which is non addictive is to hand if I get a bad bout.
i think the trick with the nausea and weight loss is to try to identify what you like
and eat it. i am off my food but can eat small amounts of honey roasted peanuts! In addition to the good things it helps keep the weight up. It will vary from person to person what they can tolerate I found soup always good.
I was told that it will take a good year before you start to feel right, my anaethesetist said the operation was similar to undergoing a car crash...so you can understand why.
Things will gradually right themselves and keep exploring the foods.
Ditto to all the above John, it is still early days and you have to be gentle with yourself, your body has been through a lot. You will get better, but just take baby steps for now
Best wishes
Edwina
Things always seem worse in the early hours of the morning, don't they! But quite a lot of people do have a snack during the night. I think it might be because you naturally feel hungry because you cannot eat normally during the day. If it is a bit of a routine and you feel better as the result of it I should not worry about that side of things.
Is the sleeping issue because of the nausea?
There are some relaxation exercises and advice on sleep that might help.
I also think that you are at a stage in your recovery when you might feel that you 'should' be feeling a lot better than you are feeling at the moment. If things are slowly improving, compared to last month, say, then there is no reason why you won't continue on the upward path. It might be frustrating, but our bodies do take their time to get over the trauma of all this surgery and treatment.
Don't worry about your weight - it is not a barometer of your progress, but it might be a wardrobe problem.
Continued nausea is debilitating. Try keeping a food diary to see whether some things affect you more than others. I am wondering whether it would make a difference if you spent a day or two just having nutrition drinks or something very bland for a while. Or is the nausea there all the time, come what may? You do seem to have run through the range of medication, so I am wondering whether your system is draining as it should. That is something that the specialist nurse might be able to help you with.
Hi John. Sorry to hear things are not going well. I'm 6 months after 1/2 my stomach and 50mm of osesophagus out and getting on well, so whats the difference?
You have lost your sphincter muscle like me. Are you having reflux? I'm not getting reflux but I have had 100mm of jejunum (intestine) put in between with a 'kink' which apparently has stopped my reflux. (see merendino interposition on here). The only issue I have is slowness of the first few swollows going down getting past the kink. Have you had radiation treatment as well? Me not. Sickness is obviously an after effect of this.
The other factor I'm suffering from which is common is wind and this does stop me getting to sleep. I have to clear the wind before I nod off. Could it be this? My chemist suggested Kolanticon which he informs me has a very small amount of silicone in it which clears gases. He explained that a drop in a pint of guiness gets rid of the froth immediately. So is it wind?. I have a theory that at the 'join' the opening into the system is smaller and wind gets pushed down.
Personally I avoid tea or any drink before I go to bed as this gives me wind. In fact i think its best not to have anything for a few hours before giving wind a chance to pass through.
The other common comment is little and often which I agree with.
Lastly a seafaring solution to sickness - try being sick with dry food inside you like biscuits and bread with NO liquid. This only works some time before you feel sick. Try this a while before you go to bed.
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