I’m sat here at 1.30 in the morning unable to sleep because I am having a panic attack over Omeprazole! I’ve been on it for over 12 years now and have been told I am unlikely to be able to stop it completely. At the moment I am on 40 mg a day, but I am reading that the long term effect of this drug can lead to gastric cancer ! Now one study says that it’s only basically if you have or have had H - pylori , the other study says it doesn’t matter if you have or haven’t, tonight I took only 20 mg to see how I go, thinking that the less I take the better, eventually trying to come off it. But what if I can never come off it, it says there’s an increased risk of 8 %, !
I know what’s started it all, my brother died 2 years ago of cancer, it started in his bladder and spread to his bowel, then everywhere, he was only 62, I am 60 in June and I am terrified my time is coming. I don’t know if his cancer was hereditary or not, I am convinced I’m going to get it again, I’m so scared.
I can’t talk to my hubby about it as he doesn’t understand really, I can’t get counselling because of bloody covid, I just don’t know what to do. I suffer with Bi -Polar so rationality goes out the window, I’m told it is normal to think this way, is it, do you any of you feel this way ? I feel quite alone at the moment.
Sorry to rant guys.
June,
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Popsic
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Hi Popsic. I’m sorry to hear you’ve had such a rotten night. I’ve never taken omeprazole but I would suggest you have a conversation with your GP. I would write down all your concerns and tell him everything. I think you can get counselling now although it may be over the phone. You may benefit from taking something for your anxiety too. Have you another relative or good friend you can talk to? If not give the hubby a go. I’m sure he wouldn’t want you feeling like this. Hope you feeling a bit better today
Hi Cassy94Thank you for your reply, I am going to phone my hospital oncologist nurse tomorrow, I’ve spoken to the GP, but all they say is there is no risk, but research says other wise. I was in the middle of counselling but then covid hit, since being in lockdown, my brother passed away with cancer, that hit me really hard, he was 62, I am approaching 60 in June and I guess m having panic attacks. Being Bi Polar my rational side disappears unfortunately.
I’m glad you’ve got the oncologist nurse to speak to. I hope she/he can help. I’ve also lost a brother - different circumstances but I understand your anxiety and I find it very understandable. I’ve just turned 60 myself and find the older you get the more you have to worry about. Go easy on yourself and do what feels right for you. Good luck for tomorrow
Thank you so much for taking the time to chat to me, I’m sorry about your brother, it’s so hard isn’t it, I lost mum in 2018 on New Year’s Day, Dad in 2019 and my brother in 2020, I think it’s all just gotten on top of me. My oncologist nurse is brilliant, she’s always there to chat to but I feel guilty for taking up her time, she always says it doesn’t matter how long it’s been. Hopefully I can get back to counselling soon.Stay safe,
You’ve had such a lot to cope with it’s no wonder things get overbearing at times. I attend a monthly bereavement group and find it really helpful. There’s only those in the same situation that can truly understand. Hope all goes well today. X
I’m sorry you’re having a hard time. I was on the same dosage and worried about the same thing. Even on that dose and sleeping in my adjustable bed I would still wake up a few times a week gagging with reflux. But now I figured out that as long as I sleep more upright in the recliner I don’t need to take it at all. I know it’s different for everyone. Having anxiety over the situation probably doesn’t help! Good luck!
I’ve been sleeping ok, for me, I probably get 4 hours solid a night, I have found since having the tummy stretch things are much improved. I sleep with two pillows and a V pillow, seems to be better, I was getting back ache with the wedge. I sometimes can feel a little tiny burning during the day, I then take Gaviscon liquid. It’s finding that balance I guess. I’ve cut the omeprazole down to 20mg a night, last night was my second night on the dosage, seems ok so far. I have been told the reflux maybe worse for the first two weeks but should settle after that. Can I ask how long you were on omeprazole? I’ve been in them simpnce 2008, started at 80mg until my op, then 40 since, but I figure the lower the dose the better, I would love to get to the point of not having to take any, who knows, it may happen.
Hi I've been taking 60mg for 12 years too. I have tried to take less but ended up being diagnosed with Barratts so back on my 60mg. I do wonder about side effects too but have come to terms with the fact it's what it is. I lost my brother too not to cancer and the other brother has had cancer too but different. He has now survived 35 years after being given a 3% chance of recovery. We are all different, and the fear of it returning is never far from my mind but I do know now that I should not ignore persistent health niggles and I do take more care of myself. Glad you have your nurse to talk too. Maybe you could get some help from Macmillan counselling or join a local support group to talk with others who have been through a similar experience. It's always better if you can talk to others. Take care and stay safe hugs Lizzy
Hi Liz,I was diagnosed with Barrett’s, that’s why I was on them in the first place, I was on 80mg then, I was having MacMillan counselling but covid hit and it had to be stopped, I’ve looked for a support group around here but there isn’t one, which is a shame really because we could all do with support. I spoke to someone back along who was 22 yrs post op! I keep telling myself that we’re all different, I’m just so low at the moment , usually I’m pretty upbeat, but my Bi-polar has kicked in , I think my brother just hit me hard, he was so healthy and fit then the next minute, gone ! He was Team GB coach in archery, I miss him so much.
Thank you for getting back to me, it’s really appreciated
I am on 40mg a day and I understand why you worry but I worry more about what the reflux would do to my cells if I stopped taking it. I think the worrying itself is not good for us so I try not to think about it!!
I know what you mean, spoken to my oncologist nurse today and she has said to try cutting them down now I’ve had the tummy stretch, so I’ll give it a go. Hopefully it will work.
Just one thing, the 8% increase isn’t as bad as you may be thinking. For example, if you were 10% likely to get something, if it was then increased by 8% you would then be 10.8% likely to get it. (Some people would wrongly assume you would now be 18%)
Hi, PDM2021,I have to admit I do get confused over the percentages, thank you for explaining that to me, I am a worrier, I have a video call on Monday with my GP to discuss recent blood tests and I’m panicking there is something wrong as he could have told me over a phone call, but then the logical side of me is telling me I’d have a face to face if it was something serious. I battle with my mind constantly, it gets very tiring..
Hi, I'm in a very similar situation with a larger dose of Lansoprazole. I actually read books on the low acid diet by Johnathan Aviv who is a World renowned GI/ENT specialist and based his work not only on real life, studies but on his own experience. He states he could not cope waking choking etc and knew it was reflux / LPR related though his Dr disagreed. In his studies and work and in others I've also read they said that the studies weren't long enough, not enough participants and didn't take into account other factors so it was not conclusive that PPIs were more of a risk than not taking them. You have to remember that the leading cause of cancer of the osephagus and throat is actually exposure to acid and indeed smoking. The study also referred to very long term use (though an estimate) and suspect you are not in that category? If you have had an endoscopy in recent years since taking PPIs the changing of cells can in fact be noted plus polyps. I also have two siblings that have come through cancer and my maternal uncle died of throat cancer at 29. However one of my sister's has been on PPIs for 19 years and it hasn't caused her any affect. But my anxiety re cancer, a prior heart issue and my diabetes also has been through the roof at times. The best thing is to contact your own Dr on your feelings, be honest and direct. Good luck, hope that helped x
Hi Judley,Thank you for taking the time to reply. I was started on 80mg of omeprazole in 2008 due to Barrett's, unfortunately by 2012 it had turned to cancer despite this, so my oes and half my stomach was removed in Jan 2013. I was then put on 40mg omeprazole and have taken the since. My brother died in 2020 of bladder, bowel and bone cancer which threw me into panic, I suffer bi polar, I had a tummy stretch last October, which have improved things greatly. I've also cut down to 20mg omeprazole just recently, I've also started drinking honey and lemon juice every morning, which seems to be helping. I spoke to my oncologist nurse about the omeprazole and she said that if I was to have a little reflux it's not going to do any harm to my oesophagus, I do find if I get a little reflux if I eat a couple biscuits it goes. I guess it's trial and error. I'm so confused at times. 😔
Hi Popsic, I'm not a Dr but my GI says coming off the PPIs if you have Barret's would be worse unless it is replaced by an alternative. Yes it's confusing. My friend also has Barret's and received limited care. However I pointed out to him that there are several stages of Barrett's and this takes many years from diagnosis to develop into cancer and have hope that for the majority this does not happen. I would avoid anything acid personally. Many advocate lemon juice or vinegar solutions but they are what you should avoid. They are fine for regular indigestion but I would avoid them. Manuka honey is really soothing for the osephagus or any natural honey, melons and bananas are soothing and are ow acid fruits. Look up Johnathan Aviv, some excerpts can be found for free. So sorry for all you've been through. I've been terribly depressed over various things and sometimes unable to get out of bed but the m health service lists are over 18 months long in this area. I paid private a while ago but cannot afford any more. Praying you get good advice and live a good full long life x
Hi Judley,Thank you for that, I've been using Manuka honey for a good few years now, I love it, I have it with the lemon to hopefully counter balance
I don't know how long I'd had Barrett's before being diagnosed with it, but I'm guessing a good while.
I do get very down, I've learnt to recognise it now, I try to stay as positive as possible but some days is harder than others. Losing my brother really knocked me for 6, I'm approaching 60 this year and I'm terrified of what's to come. People just don't understand really.
Hi Popsic, I'm 60 next year and to be honest I was a bit worried in some cell changes in that area and was surprised that on the last endoscopy they didn't even check the polyps though he said he took a biopsy for the bacteria (forget what it's called) that causes ulcers. I understand because I have had two siblings with cancer plus my uncle passed at just 29 with throat cancer. Try to remain positive because the majority of cases of Barret's never turn cancerous and those that do take a while to get there. My friend's has now become stage 2 (there's 4) but they told him everything looks good and he's mid 60s. I suppose we all need to look after ourselves more and enjoy and appreciate the simple things in life taking everything in as we walk etc. I was doing well with mindfulness/meditation then things happened which just got to me then this pandemic. You take care too and stay safe. Unlike many when out I still wear my masks xx
Hi Judley,I have to say I was shocked when my Barrett’s turned to cancer, my doctor assured me it was highly unlikely, I’m surprised that nothing is being done about your friend though, the early they act the better, mine was stage 1 I believe so incredibly lucky. This pandemic is dreadful, it’s upset the country so much, everything put on hold, hopefully this will be the end of it now, or at least easier to control .
I do hope your friend will be ok, you take care of yourself and stay safe, xx
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