Hi,
I wondered if anyone can offer any advice? My Mum is 6 weeks post Ivor Lewis op and has been bringing up fluid which looks like bile (light yellow) about 4 -6 times throughout the night? She has a bed wedge and is elevated with pillows too? I’m not sure if it’s sickness or reflux/ regurgition? She takes omprezole morning and night, she doesn’t eat after 6pm? She still has a feeding Jed and is convinced as soon as it goes on it starts the sickness? Is this normal post op? Many Thanks Debs
I think you or your Mum should ring the hospital and discuss this with the specialist nurse. The amount of food may need to be adjusted. I don't know much about this, but it must be miserable for your Mum, so talk to someone who does know all about it at the hospital.
Thank you for your advice. We are at the hospital on Tuesday to see the specialist nurse and dietician. If we could get on top of this during the night, it would help her recovery. Helping her get a good nights sleep. Hopefully we can discuss and put a plan in place on Tuesday with the team.
Happy New Year!
I am 8 years post Ivor Lewis operation. I do have bile reflux at night and find that can reduce this by not eating anything 3 hrs prior to bed also if it occurs I find that elevation and sleeping in my right hand side helps as the tube from your stomach comes out of the Right hand side of your stomach and the bile drains better by sleeping in that side. Although this works for me it may not work for others.
Wow 8 years post op, it’s such a positive to hear people do adjust to life after this major operation. Thank you for your advice. It seems it’s trial and error to see what works? We are at the hospital on Tuesday, hopefully we can get something in place to relieve the night sickness.
Happy New Year!
Debs this is horrid for your mum it’s the foulest tasting thing in the world and really got me down. Very demoralising.
Gravity is important- sleep sloping up as Ian says.
Taste - give her sweets ( sugar free worked for me) to remove taste from mouth . Sweets better than a drink perhaps as less volume. I bought sugar free seeets from Aldi cheap and tasty.
As said by Ian avoid eating before going to bed - he says 3 hours
I’m not sure the drugs you mentioned deal with bile which is an alkali I understand used by body to neutralise the stomach acid. Omeprazole suppresses acid I think.
If your mother isn’t using the feeding tube maybe it can come out? I got mine out really early on.
But really patchwork’er advice is best go back to special nurse or dietician.
If you have their email ( I had mine) then an email is good or ring direct you must have their number somewhere and chat in the phone .
She’ll get through this it gets better over time
Best
Mark
Thank you Mark for you helpful advice. Mum is still having her nightly feeds. She is eating little and often during the day. We were at the hospital 2 weeks ago and the dietician said once the sickness is under control the feed Jej could be removed. We went straight to GP and she was prescribed metaclopromide. It’s has eased the sickness during the day, but not the night? We are trying everything bed wedge etc.. but just can’t seem to relieve it?
We are back to the hospital on Tuesday, hopefully we can discuss and try another plan?
It’s reassuring to know things get better over time. This forum has been a blessing and such a support.
Happy New Year!
Hi has she tried Gaviscon Advance before bed. Also if carries on phone hospital she is very early days and our body takes a while to adjust. She may need a stretch if food isn’t going down.
Best Wishes
Debbie
Thank you for your kind advice Debbie. We are at the hospital on Tuesday and I am going to ask about Gaviscon. She drank loads post op. Food seems to be going down fine, it’s not getting stuck, it seems better than before the op? Maybe it’s collecting and not going through her system quick? I do think it’s bile as it’s a yellow liquid mostly?
Happy New Year
Good luck on Tuesday-the stretch Deborah refers to could well be of the pylorus. This is the sphincter between the stomach into the intestines and is not related to the problem of food getting stuck which was initially probably du to the cancer growth.
If this is stretched ( easy procedure ) then the stomach will empty better and this can help dumping. And maybe stomach reflux as there is less hanging around in the stomach.
With your mum the issue you say is bile. I have no idea how it gets up into th stomach but it is released by the bile duct Into the small intestine and helps the body break down fat. It is alkali so gaviscon ( an anti acid) I don’t think will help. Also stretching the pylorus , the valve /sphincter between the stomach (acid )and the small intestine ( bile , the alkali) I would have thought is unlikely to help. Common sense would suggest it would make it worse as it would make it easier for bile to move up the smalł intestine into the stomach.
There are a lot of moving parts here and as you see it is muddling so the specialists are your best bet.
This next comment is totally my own view and please don’t take it as a remedy for your mum just a thought to discuss with the medics.
If she is taking drugs such as omneprazole and is still suffering then the signs are the drugs are not working. Maybe try and go as drug free as possible and rethink.
I would as has been mentioned try and get off the feeding tube if I could as It goes in below the stomach and maybe is effecting the bile .
Time will sort this out of nothing else does.
Good luck
Mark
I echo all of the above.
I tend to not eat <2 hour before bed. I normally eat a scoop of vanilla icecream before bed every night.
I did think there was a relationship between the Jed and nausea - always swore I could taste the feed and hated it. Felt better mentally and physically when it came out.
My surgeon recently upped my opemrazole dose - seems to help.
Cut things like pineapple and tomato from your diet.
Chewing gum helps to get rid of the taste ! I find it better than sweets as it creates saliva which seems to neutralise the bile.
Despite all of the above I swear my experience with bile is cyclical - a few times a month I suffer from it -normally at 3 in the morning.
Thank you for your helpful advice.
I think my Mum has the same relationship with her Jed and nausea! She too isn’t a fan of it. If she is eating ok, hopefully they will remove it soon!
I will get Mum to implement all of the above. Maybe her omprezole needs adjusting too?
Many Thanks
Happy New Year
Is she keeping a food diary ? I found the Jed to call nausea Inducing but also seriously degrading - having it removed made me so much happier Is wasn’t funny !
There are loads of foods which I found easy to eat and sufficiently high in terms of calorific Intake that the Jed Wasn’t Needed.
Humous, avocaodo, Greek yoghurt, smoked salmon, bolognese sauce, sardines, rubbed tuna,cheese, mashed egg, Pate, poached eggs, smoked oysters, fish, prawns, scrambled eggs (made with cream) and soups from M&S are all really good.
I still steer clear of rice, bread, mashed potato and numerous other ‘gluggy’ Foods as I found them hard to digest. Also, things coOked in too much oil.
To start with personally I didn’t worry too much about fat content but over time you will need to start reducing fat.
I think it depends on how much of her stomach has been taken but milk and cream might be a problem initially. I found I could not take any milk or dairy for about three months - but was able to reintroduce gradually. I had been told to try non-dairy milk substitutes but NONE of them worked for me.
Personally, too much sugar was and is still a little problematic..
Breakfast of apple, nectarines, blueberries, strawberries, cut up into small pieces and topped with yoghurt is still my staple start for the day.
Ask her GP about Creon tablets (these help with digestion) and also pregabbalin (nerve damage in rib cage and shoulder). I’d also ask about opemrazole - my surgeon says not to worry too much about some of the recent studies reporting negative stories about opemrazole but I’m keeping a watching brief on this!
Main thing I’d suggest is gradual experimentation. My diet is nowhere near where it used to be but I’m happy wi H what I can eat !
There bile sequestering medications that can be prescribed. I am 18 years out from a transhiatial esophagectomy and going on 10 years out from a gastric bypass for bile diversion. I don't suggest that route.
Hi. debs I used aniseed boiled sweets (sugar free). And drinking youghurts throughout the night. I also found the oral dispersible fast abs by Zoltán were the best anti acid for me. I was grazing just very small amounts all day long xxx
Your Mother's situation is dangerous in that she is at risk of inhaling bile contaminated chyme which can induce fatal pneumonia.
Raise the head end of the bed by blocking up the legs 6-8 inches. Do not rely solely on a wedge as this causes compression at the midriff.
Her condition will continue to fluctuate unpredictably until at least six months recovery time has elapsed and possibly for much longer.
The jej flowing all night will induce irrational peristalsis in the gastric tract which has the effect of forcing contents up as well as down, a particular problem when two of the non-return valves (the Upper and Lower Eosophageal Sphincters) will have been removed and the functioning of the third (the Pyloric Sphincter) will have been compromised. So the sooner that night time supplemental feeding can be dispensed with, the better.
Bile sequestration is relevant only in the context of the functioning of the lower intestines and will not assist with reflux.
Sadly, unless you are attending an exceptional center, you may find that the understanding of these issues is minimal as all too frequently our NHS does not do much in the way of detailed and relevant aftercare ........yet another national scandal.
We've been taught here that sleeping on your left side and elevated is better for acid reflux and heartburn. Wish someone had told me years ago. Best of luck to you and your mom.
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