Longterm meds: Hi all, Is there anyone... - Oesophageal Patie...

Oesophageal Patients Association
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Longterm meds

Popsic
Popsic

Hi all,

Is there anyone who has been on omeprazole for a very long time after surgery? I've been on them for 12 yrs, but 7 yrs post op, I'm hearing a lot of reports about the double risk of getting stomach cancer if your on them long term. Seeing as my stomach is now my oesophagus as well I'm getting really stressed about this, I take 60mg a day as I still suffer badly with reflux, I've recently gotton married and I'd like to live a long marriage, I'm 58. Can anyone help me?

30 Replies
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Well I don't think I can help but I have been taking Omaprazole 20mg for around 7 or 8 years. It was for acid reflux and sorted the problem.

A few years later I was disgnosed with bronchiectasis (a lung disease) and the consultant told me to keep taking them as excess acid could enter my lungs and cause more problems

Around Christmas 2019 I read an article about some of the side effects of taking OMaprazole and how it could cause cancer just like you say. Like you, it alarmed me greatly. I spoke to a new doctor in my Practice and he suggested I lower the dose slowly over many months.

I was to take a 20mg pill on one day followed by a 10mg pill the next day. He also told me it would be difficult and a little painful and prescribed Gaviston medicine to help during this time. I am now in the process of doing just that and hopefully can come right off them.

I havent been able to speak to my lung consultant to tell her what am doing as yet so when I do I will be discussing the whole situation with her again.

You are on a high dose of Omaprazole and for quite a long time. I think its time to have a discussion with your doctor to see if it's still a necessary pill to keep taking or is it possible you could safely reduce the dose. We can't just keep on taking these drugs. We need to ask questions and get the answers we need.

Please let me know what you decide and keep in touch.

Cheers 😊

Popsic
Popsic in reply to RoadRunner44

Thank you for your reply, I keep telling myself that seeing as they removed my oesophagus in 2013 and part of my stomach, that I'd start afresh and it's been only 7 yrs lol, I've decided to try to lower the dose to 30mg once a day see how I go. I take Gaviscon anyway so if I have to up that I will. I shall also chat to my doctor and see what they can do, I don't really like taking omeprazole or any drugs, I'm taking 32+ a day as it is.

I shall keep you updated. 😊

RoadRunner44
RoadRunner44 in reply to Popsic

Oh you are in a difficult situation and I dont envy you. However, do be sensible and dont panic into making major changes to your medication. There is a reason for taking all those pills and you must get a proper appraisal before starting on an unknown path.

For example, you say you are going to reduce from 60 mg to 30mg. As I said, it's a very slow process to cut down thse pills. Before doing anything please speak to your doctor and find the best way to do it for you personally. I'm finding it uncomfortable going from 20mg to 10mg.

😊

Popsic
Popsic in reply to RoadRunner44

Thank you, I will take your advice, I'll get an appointment as soon as I can. It is a scary thought these side effects, I try to stay positive but it is hard sometimes, thank you for taking the time to chat with me. 🙂

RoadRunner44
RoadRunner44 in reply to Popsic

Your welcome! Sadly, we have to take drugs for different purposes and of course they can be lifesavers. However, Im a strong believer in not just accepting what we are given without exploring further. Knowledge is power so empower yourself by reading up on your medication on good, trusted medical sites. It will help you to ask the right questions when you speak with your doctor..

X

Popsic
Popsic in reply to RoadRunner44

Thank you I shall do that. I’ll let you know what happens. Take care of yourself, speak soon x

Dear Popsic

The advice from Roadrunner is spot on. Any changes to your meds must be through an informed process with your GP.

I wonder though if your diet has been interrogated as much as your medication. After my IL I flipped from serious constipation (bad enough to be hospitalised) to serious dumping. My dietician (Part of the MDT monitoring me) then asked me to keep a log of everything I ate and drank for a month. Absolutely everything. Every nibble, cup of Tea, sip of water etc etc. It was very tedious and time consuming. After she had reviewed the pages of data (much of it uninteresting to me) she removed several items (incl caffeine, dried fruit, some nuts ) from my diet and I have been much better since with a bonus in reduced reflux. So it might just be worth asking for a referral to a dietician to see if your diet is part of your problem and a new diet may be part of a solution.

Best wishes

Tanktank

Popsic
Popsic in reply to Tanktank

Hi Tanktank, thank you for your reply.

My diet has been a huge issue, mainly due to the fact that my body doesn't absorb food properly, diarrhea is my problem, I have tried all sorts, eventually they put me on Creon, loperamide and mebeverine, which has worked much better, but just within the last 2 months or so its changed completely and now I'm constipated, don't know which is worse! I had a CT scan few weeks back because I felt like I couldn't swallow without the feeling of something being stuck, I'd had an endoscopy and all was good, the CT was of my chest and abdomen, that came back fine too, I was concerned about bowel cancer, but I'm guessing the CT would have shown that. I am very careful what I eat and try to keep away from acidic foods, but I shall phone my nurse and ask to speak to the dietician, because of my meds I'm still on the list to be seen yearly, so that's a bonus. I never understand why we don't get a yearly check up anyway,

Thank you once again for your reply, I shall keep the group updated on any progress.

Kind regards

Popsic

Can't give any concrete advice but I have am only on 15mg once a day and don't seem to suffer with reflux but I never really did. My daughter suffers far worse then I ever have and she was told by team at Cambridge that if you feel the mess aren't doing anything tell your GP and they should move you to a different one to try and ease symptoms. Have seen several stories suggesting ppi meds should not be used long term but on the flip side there are also suggestions that the benefits outweigh the risks. I never took any meds for reflux prior to symptoms starting as it was never believed to be an issue.

Best wishes

Bunny

Popsic
Popsic in reply to Bunny69

Hi bunny69,

I had reflux before the cancer, apperently that's what caused the cancer after 20yrs of it, I'm not sure how many here have had their oesophagus removed so forgive me if you feel like I'm telling you what you already know, because my oesophagus is gone I no longer have the sphincter that stops acid from coming up, so the remaining of my stomach is now my oesophagus too, as you can imagine acid is right there at the base of my throat. The omeprazole work fairly well, my only concern is if I were to get stomach cancer what happens then, to me I have no chance, I've asked the docs about it and all they say is its highly unlikely to happen, they say that I have the same chance of getting cancer again as joe bloggs! But for me that's not answering my question. There is so many negative thoughts on ppi's that it's beginning to play on my mind now.

Thank you for your input tho, I shall certainly have another chat to the docs and see what's what.

Kind regards

Popsic

I am sorry you had esophageal cancer . I've had pain for 5 yrs despite Ranutidine and Esomaprazole. Last scope in 2018 gastritis and oesophagitis. GP put me through to hospital for another hopefully but appointment cancelled so phoning me on 3rd August to discuss. I still doubt they will be doing endoscope yet. My friend had part of his stomach removed and he always then had diarrhoea....dumping syndrome. Best wishes I know how stressful it all is

Popsic
Popsic in reply to basten

Hi Basten,

Thank you for your kind words, dumping is a b***h lol, I have late dumping which apperently is here to stay, oh joy🙄 but I count myself blessed as I'm still here.

I've been OK really up until recently, I lost my mum, dad and beloved dog all in the space of months and I've only been married 2.5 yrs, also my brother was diagnosed last Yr with a bladder tumor which has spread and he is currently going through treatment, so I think it's all brought it to the fore really. Just makes you question your mortality. I do all I can to stay healthy, but who knows.

Thank you once again

Popsic

basten
basten in reply to Popsic

Hi oh no how awful for you to have gone through all those losses. I know what it's like to.lose our dogs...I didnt wash and dress for two three days. But to also lose parents so close together very traumatic. Then your cancer now your brother has it. Poor family!! And to be married for such a short time. Just love one another and I'm glad you have a partner to support you. You've been through so much stress which hadnt helped . So sorry to hear. Tell me, how did they find your cancer? Were you unable to swallow etc? I now get a hoarse voice on and off and have to clear my throat. Swallow ok but do have slight dismotility in esophagus from test. I am worried they will find something bad and pray they will do an endoscope soon. It will feel inflamed and "burn" as I call it starting half way down my back through to shoulder blades. I've had pancreatis before but recently bloods came back ok as I was in pain all day and night.

I've heard that if you having dumping syndrome a GI told me I had from a barium swallow through he said low GI foods as they pass through too quick. But hey!!! As you know life is too short and we dont know what's round corner so a little bit of what you fancy cheers us up in moderation. I'm sure you will be ok please God. . I am a worrier but as I've had this 5 yrs now I just cant help thinking by now there must be something nasty going on! That's all you can do is eat healthy and I guess smaller meals? You sound a lovely person.

Popsic
Popsic in reply to basten

Hi Basten,

Firstly thank you for your lovely comments, it has been a difficult time but I have faith that God has got this!

The only sympton I had was heartburn, it started when I was pregnant for my son, who is now 35! But I ignored it and put I'd down to pregnancy, it got better after he was born, but still there, then 4 yrs later pregnant for my daughter it got worse, again I ignored it, wasn't until 2008 it became unbearable to the point I couldn't bend down to put my shoes on! So my then husband made me go docs where I was sent for an endoscopy, I was diagnosed with Barrett's oesophagus, that was June, my ex husband left in the August,

Every endoscopy was fine until 2012, was supposed to have one in the June but the hospital forgot me, so I rang up and got one for August, went August but my specialist had gone on holiday! So made another for October, that's when they found the cells, told me had I gone in June or August it wouldn't have been found and by the time the next came along it would be too late, I truly believe I was God led ( I am a Christian btw). In January 2013 I had an Ivor Lewis. Been on a roller coaster ever since. The dumping is a b***h, taken me quite a while to get used to. I still over eat occasionally and I pay for it. But I'm blessed to still be here and try to help others. I. Always thought there was something going on and never was, the one time I thought it would be OK it wasn't lol.

Try not to worry too much, stress certainly doesn't help.

Keep us updated too, keep smiling

basten
basten in reply to Popsic

So you have two children. That I hope is nice for you. Sorry you have an ex so presume you are on your own Yescwith my croaky voice and throat clearing I thought Barretts too . As I said I'm praying when I speak to GI on phone 3 August they may say they can do a scope. Never heard of an Ivor Lewis. Will Google it.

Like me for 5 yes never anything wrong except esophagitis and gastritis still. Somehow each time I prayed they could help but no keep taking antacids etc.

Yes stress doesnt help. I am a Christian too. I nearly hit a car today she stopped just in time and I thanked God for helping me.

😊😊😊

Popsic
Popsic in reply to basten

Hi

Yes I have 2 kids, and 3 grandchildren,

I have a new hubby now 2.5yrs, never thought that would happen lol.he has 5 kids and 5 grandchildren so in effect we have 7 and 8 lol. I will pray for you too that a scope will be done, it puts your mind at rest if nothing else really. My faith helps a lot, I'm always asking for signs and I get them. I was in two minds whether to join but I knew I needed to and I've found some peace today.

Are you on your own or do you have wife / partner, children?

June

basten
basten in reply to Popsic

Wow lots of kids etc. How nice. I'm 71 widowed 20 odd years he died at 50 of 5 brain tumours. 2 kids. Girl 44 still single who is desperate for family but has dated in years so is looking into IVF. Shed make a lovely mum but I worry about age. Cut off age for it in UK is 45. One son gay 42 so no grandkids. Both have and are been very loving and supportive in my times of need..depression etc. But I do miss company and they try to call in a weekend sometimes son has stayed over.

Thankyou for your thoughts and prayers. I do do virtual with my church on Sundays. A small group of about 13 to 20. My daughter always prays and believes she doesnt go to church tho but she did get herself baptised full submersiin last April .

🌹🌹

Popsic
Popsic in reply to basten

Ahh bless you, it can be lonely, I was alone for a long time when first diagnosed as my first husband left me 2 months after I was diagnosed,

I suffer bi polar so it’s been hard. But I’m having more good days now.

I have been doing virtual church too, I’ve quite enjoyed it really.

Anytime you need a chat you can message me, x

basten
basten in reply to Popsic

Ok thankyou. Yes I'm on meds for depression. Will do try to let you know what happens .God bless. So glad your doing well

Popsic
Popsic in reply to basten

I'm on anti depressants too, used to be ashamed of that, but not anymore, please do keep in touch x

I was on omeprazole for many years for reflux symptoms. Omeprazole, taken long-term, can lead to vitamin B12 deficiency which may cause disorders of the nervous system. I developed neuropathy with loss of feeling in my feet and hands. I saw a neurologist who did the right blood tests. The laboratory reported that my B12 level was in the normal range. The neurologist concluded, therefore, that I did not have deficiency. The cause of the neuropathy was, he said, unknown, a common situation. Years later further blood tests showed I had vitamin B12 deficiency. I discovered that it is now accepted that it is possible to have vitamin B12 deficiency at the same time as having a "normal" laboratory blood level. Modern advice is to treat the case as one of deficiency if there are symptoms of deficiency along with a possible cause of the deficiency, in my case long-term omeprazole.

Popsic
Popsic in reply to rosegrower

Hi Rose grower.

Yes I was aware of the deficiency side of things, also the increased risk of osteoporosis, its the risk of stomach cancer that bothers me the most. I was told that once I had the op I would be on omeprazole for a short while then the reflux sympptons would ease, but there not, the longer I'm on the the greater the risk, but your between the devil and a hard place, if you don't take them then the acid will do more damage but if you do the omeprazole can do damage. I'm going to chat to my doc and see what's what.

PPIs are relatively safe medication and have been prescribed for years. But 60 mg is a high dose and I would be inclined to ask your G P for an alternative PPI ( Esomeprazole) which is a later PPI and more effective than Omeprazole.

You would probably only have to take 20mg twice a day and then gradually reduce o 20 mg a day . As an added precaution you could also ask for Gaviscon liquid to be taken before going to bed. This as worked for a number of patients in our group including myself. It would be great not to take anything and I have tried a number of times but in my case is was just not worth it as I suffered reflux and soreness in my throat. Its worth noting that this medication has a protective effect on what is left of our oesophagus and stomach and its also about quality of life.

I had my Esophagectomy 14 years ago tomorrow

See your GP and all the best to you

Phil

Hi Phil,

Thank you for that, I will be phoning my doctor Monday morning and see what they say, I have had Lansoprazole before but he never offered me esomeprazole, so that is something to ask for.

14 years wow ! Are you still doing ok ? It’s great to hear of so many outcomes. I suffer with bi polar so I can get really panicky at times, with all that has happened and is happening I think it’s just exasperated things. I have to go into hospital for an op soon also, I have an abscess come up in my belly button which would you believe is caused by a stitch from my op ! That was 7years ago, I seem to get to a point where I feel “ normal “ then up pops dumping or some other connection lol. But I’m still here, that’s what I hang onto.

Thank you once again for replying, you’ve given me some hope 😊

Kind regards

June

basten
basten in reply to Popsic

I'm glad you've found someone on here who had the same procedure as you . I still take esomaprazole twice a day Rinitidine twice a day and Gaviscon especially at bedtime

Popsic
Popsic in reply to basten

I'd be lost without my Gaviscon, lifesaver that one! Keep taking the tablets they say, they just don't know how many I take lol x

hello June,

Reading in between the lines.

You are positive and in fighting spirits, keep it up. Have faith where you have and empower it positively.

Dumping can be managed effectively, see below link of OPA and download the leaflet on dumping or call them for a paper copy posted to you.

opa.org.uk/downloads.html

Constipation is caused by you multiple medications, you need laxative to go with.

Excess acid is not a outcome of the oesophagectomy procedure, rather this is compromised.

Excessive medicines, stress and anxiety, if smoke and alcohol exists, these exacerbate the acid issues. Having said that PPI routine is not something a wholistic approach for the issues you have, in my opinion.

Esomeprezole is tad bit expensive than omeprezole.

Only you can help yourself. Symptoms require to be managed in immediate terms and root cause treated if not eliminated in ongoing terms, NOT other way round.

Popsic
Popsic in reply to Mauser1905

Hi Mauser,

Thank you for that, I'm trying all sorts atm, I don't smoke, drink very little now, in fact I've swapped to alcohol free, just so I can " join" in really. I stay away from as much acidity as I can in my food, trouble is all this healthy eating malarkey incorporates fruits and veggies lol. Overall I am positive and my faith helps a lot. Sometimes it's just the reassurance that your not going mad.

I'm looking into alternative solutions also, so any tips will be gratefully recieved😁

Kind regards

June

Mauser1905
Mauser1905 in reply to Popsic

Ok,

Good you working on helping yourself.

Try taking your tablets in between meal itself in batches. Only sip littlest amount of water to just push the tablets down the throat. Rather than taking a whole bunch after finishing the meal.

Avoid drinking water during the meal, 30 minutes pre and post meal finishing.

Fizzy drinks such as cola, artificial concentrate juices, energy drinks, coffee etc all aggravate the acidity.

GPs only get 10 minutes to see you and discuss and offer something. Not going into tangent here, but with variety of medications suggest see your pharmacy and ask for a holistic review of the medications and if anything being a bad apple amongst these and or if something can be removed, reduced, reviewed etc?

Its very easy to put somebody on long term ppi without doing a overall review of the whole body rather parts on its own. Suggest start with pharmacist, then push the findings back through them as well yourself.

Popsic
Popsic in reply to Mauser1905

Thank, hats a good idea re: pharmacist, never thought of that. Docs are so hard to get hold of. I will let you know how I get on😉

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