Hi everyone, I haven't been on here for an awful long time as unfortunately after just over 4 years, I'm someone else who's almost come to the end of the line, so I've been in hospital and hospice a few times and find it harder now to get involved in things.
I'm now at home with a pump syringe which gives out morphine and anti-sickness drugs 24/7 and is excellent at keeping pain and nausea at bay. However, in the evening and at night I'm having such a problem with reflux pain. I have been taking a Zoton tablet for this for many years and now have one in the evening as well as the morning but this doesn't seem to be making much of a difference. I've tried all the usual, peppermint, sipping warm water,etc and am hoping someone can suggest something different. I have Oromorph (liquid morphine) which I can top myself up with every hour if I need it but I don't want to be continually doing this. I usually eventually fall alseep around 2ish and when I awake a few hours later everything has settled down again. I'm eating very little, and very, very slowly and mainly now have the Ensure Plus drinks as my meals with little bits of what I fancy sort of fitted around them. Any suggestions would be much appreciated.
Love Cathy x
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I have been thinking a lot about you (and have recently searched for you) I thought maybe you left ..and came on with a different name (without deleting your profile) I was even trying to work out who you might be.... so I am so sorry that you are having problems.. and haven't been on at all because of this....
I am not sure I can be much help but just wanted to say I have missed you and have been wondering how you are.. so want to say welcome back.
I hope you will get some good advice and that things will soon get easier for you.
I'm sorry you've had so many problems. I was also wondering how you were as I'd noticed you weren't online so much recently. I can't offer any suggestions to help with the reflux but am just sending love, and hoping someone here has another idea that you might try so you can get comfortable.
Dear Cathy, I am really sorry to hear that you are having problems. I am not sure if this will help but I have found this helpful in the past. I cut up about an inch of ginger root and place in about a cupful of water in a saucepan. I boil the water and then simmer for about ten minutes, leave to stand and pour the liquor into a glass and further dilute with cold water. I used to sip this over about ten minutes, It is a faf and you need to get hold of the ginger root but it may work alongside your Zoton and other medication. In terms of medication I use omeprazole 20mg morning and now evening to cope with trying to stop the acid reflux. This may or may not be helpful and I hope that there are others with other ideas.
Hi Wendy thanks so much for your reply. I think ginger is about the only thing I haven't tried, I used to drink some ginger beer during chemo to help with nausea but never for this. I'll definitely give it a try.
I am now also taking omehprazole twice a day and have tried ginger root as well. I did find some ginger tea not the tea bags but loose dried ginger root to put in my infuser. Must get some more and fennel can help
Thank you for your post, I will look out for dried ginger root and I did not know about Fennel, so glad to have something else to try.
Hi, your situation is pretty much identical to Sandra. Her chemo journey ended Aug last year and her Tamoxifen journey ended in Feb. We are now freewheeling with same symptoms. Since her bile duct stent was fitted in Jan she has terrible reflux. Taking two zotons per day plus many swigs of gaviscon did little to help. She was off her food, had biliary infection in Jan and another in Feb. Was put on steroids last month to improve her appetite which did the trick for a while but then she started being sick and couldnt keep food down. Her reflux was making things worse. It appears she may have gastritis prob caused by steroids, which she has stopped taking. She started bringing up blood and having black tarry stools (bleeding in stomach). Was put on oramorph to be taken when required, antisickness to clear stomach contents more quickly, zoton for reflux. She hasnt eaten solids for past 3/4 weeks but has a craving for ice lollies and ice cold milk, taking ensure milk drinks in small amounts. She has become aneamic and was taken into a hospice on Fri for a blood transfusion tomorrow. Now on a pump driver for antisickness, taking lansoprezole capsules instead of zoton, her reflux seems much better. If things dont improve in next few days the concern would be that her bleeding is disease related and not gastritis and she may need a gastroscopy to look inside. She has lost considerable weight recently and her bowels are giving griping pains.
I have just spoken to her 5mins ago, no sickness last night, first time in a long while, had jelly and ice cream for tea yesterday which stayed down. Her reflux is much better, her main complaint is a new pain in her rectum as of last night. We hang onto the hope that the transfusion tomorrow gives her more energy and stops this dozing all day. The plan is for her to return home this week. Xx
Hi Paul, Yes Sandra and I sound at about the same awful stage. I take 30mg lansoprasole twice a day as well as gaviscon after eating but it's not really doing the trick at the moment. Thankfully I'm not having the problems with tarry stools etx as I have a stoma and although I've been in hospita/hospice the last 3 times because of the bowel being strangled by the tumours and therefore blocking it, at the moment it's behaving itself. Just after I wrote this blog I remembered a few years ago having a food intolerence test done and if I remember correctly I had a slight intolerence to dairy. I started using lactose free products which definitely helped. I wondered if that is causing some of the problems now so I've cut out dairy for the last couple of nights and I haven't had to take any extra pain relief and haven't had the awful reflux tho it's not gone completely. I'm getting some lactose free custard, ice cream etc in because these things are so easy to eat and I hope this will help.
I want to send love for your bravery on the journey of four years. This is ahead of me and so many other heroic souls on this site. I have lived in different parts of Africa many years and people say there "I am sending white light" which I always loved so I am trying to do this for you. I find a big bunch of fresh mint leaves with honey in boiling water helps indigestion and tummy stress but I am at an earlier stage.
A friend found taking lansoprazole fast tabs 30mg twice per day, 20 mins in am before food and 20 mins in the evening before bed and sucralfate ( antepsin) 4x per day after meals and 10pm, really made a huge difference to the quality of her life- was delighted that she could even drink a Buck's Fizz at Christmas without indigestion/ reflux.
So sorry you are feeling so low Cathy! Have you been told about Hospice at home care? My GP has promised me that! I do not yet need the pump syringe but for the reflux I have had Lansoprasole in the mornings and I now use Gaviscon to cope with it later in the day though it cannot be taken 2 hours either side of the Lansoprasol. It does not get rid of it entirely but does make it tolerable. I am at 4 1/2 years from diagnosis too!
I hope this helps! Good luck! Remember to stick two fingers up to the end.
Yes thank you I know about the hospice home care - my medics are very good at keeping me well up to date about everything and getting things in place quickly for me. I too tke 30g lansoprasole morning and night with gaviscon in between but unfortunately this just isn't doing the trick anymore. You can rest assured that I'll definitely be sticking up 2 fingers when I go - in fact it'll be my whole hand!!
Hi Cathy..
I have one of those V shaped pillows in bed and I find they give a lift.. and snuggle in all the bits which need support .. I find this helps with reflux so I'm not lying flat .. My mother-in-law gets a discount as she's an ex employee of a local firm which supplies these goods.. I could send you a link but would be willing to send you a new one as I have a spare. I'm really glad the pain's being controlled ...love to you.. Xx
Dear Cathy
Am so sorry you are feeling so rotten. I wish I could help and have just one suggestion you didn't mention - it is from my experience with my husbands hiatus hernia, because that causes constant reflux - which is a proper bed wedge. Just a bit triangle of foam but sleeping with it means you are bent upwards from the hip not from the mid back as with pillows, which also usually squishes the stomach. That way the antacid remedies seemed to work a lot better. I hope it helps, wishing you love and strength.
Sorry ladies, I have just lost a second long reply to you all shortly before pressing send - I don't know what I'm doing wrong!!
I will calm myself down and come back on tomorrow to reply again to all your very kind suggestions as now I need a lie down! Never mind OC - computers will be the death of me!!
Aaaaarrrghhhh!!!!!! I have tried to send a long reply three times in succession now and they just keep disappearing. I will have to log off now and calm myself down and try again tomorrow. Never mind OC - computers will be the death of me! I don't know what I'm doing wrong. XXXX
The problem is the reply button too close to the cancel button and if using touch screens its easy to cancel the message in error. Done it loads of times myself.
Thank you so much ladies for giving me all these tips. All of them, apart from the ginger which I've not tried, but will, I'm already having unfortunately! Sue, I sent for the wedge pillow a few months ago after a tip from you. Unfortunately now I have to be almost vertical propped up with my pillows to get some relief. However I have cut out dairy for the last couple of days because I remember years ago being told I had a slight intolerence to it and this does seem to be helping somewhat in that I've not had to take extra pain relief as well as my pump syringe which is giving me morphine and two anti-sickness meds through continually. Thank goodness for modern medicine!!
Thank you again everyone and as I said to Margaret, not just two fingers will beheld up to this awful disease but the whole hand - maybe even two if I can manage it!!
Much love to all. Cathy xxx
Take things slowly Cathy, don't feel stressed least of all over the missing replies on here. Gentle hugs x
I take Lansoprazole for acid reflux 60mg twice a day. I also take Ranitidine for break through symptoms. Ask if you can have Nexium, it's stronger. Ask for as much as you need to get you comfortable. You can also ask for some gaviscon, either liquid or tablets. I find the tablets better.
It's important to take a proton pump inhibiter between half an hour and an hour before food. Don't take gaviscon at the same time, leave at least an hour between.
Hello - I suppose firstly I am sending you kind wishes and you will be in my thoughts. I have horrible reflux and have used all the drugs prescribed by GP & Oncologist. Now I take Zotrole about 1 hour before eating and also take Motillium/Domerid 3 times a day and try to sip water constantly during the day - not always easy. The best way for me to eat now is sitting up straight - it sounds strange, as I know we should all do that - so that might help. Love & best wishes to you. Daisies.
I'm so sorry to see what a rotten time you're having. All the remedies I would have suggested have already been covered by the others. I do hope one of them will help. Having the bed propped up so the head is higher is something my Doctor suggests, plus taking Gaviscon. Also, sleeping propped up, not lying down.
I sooo sympathise with you over losing typed out messages, especially the longer ones - Grrr!! Makes you want to scream or swear!!
Hi same problems here! I find ginger capsules a green bottle from Holland and Barret easy to use they dissolve to make tea.eating is such a problem! l have ascites again and the wait for treatment is so upsetting bes wishes x
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