Stroke Survivor - On no medication (part deux)

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This is a quick note as a follow-on to my earlier post 11 days ago in which I announced Mum was drug free and it was happy days!

Since then, there have been things happening and not all of them pleasant :frowning:

But overall, we are happy with what we did, but not the way it was done. We worked with the GP to try to get a safe cessation, but unfortunately we had a rookie GP and worse we despite knowing better were not more assertive in the suggested method.

Our research had already made us aware that
" You should not stop taking omeprazole abruptly without consulting your doctor, especially if you have been on it for a long time. Abrupt cessation can cause “acid rebound,” where your stomach produces excess acid, leading to worse symptoms than before you started the medication"

But foolishly we followed the GPs advice and did a hard stop i.e. Cold Turkey. In total Mum was on the Omeprazole (the proton pump inhibitor) we were coming off for 3 months which is a relatively short time, but despite that Cold Turkey was not a good idea.

Consequently, Mum is now suffering from acid reflux and has to be put back on omeprazole to help her, but again with a view to coming off safely as soon as is reasonably possible.

Watch this space.

Lessons learned.

  1. Trust your own judgement
  2. Don’t trust rookie doctors - they are easy to spot
  3. Challenge or double check recommendations made by the doctor (our biggest mistake in this).

Just to demonstrate how bad this GP is.
Today we had to call her in to address this issue and she did usual obs checks, BP, temperature, O2 levels etc. which were all perfectly normal and so she said she will make a referral to the dietician (this is what the senior doctor had suggested on an earlier phone consultation).

She was about to go off on this basis having failed to make the connection with coming of the omeprazole and current condition :frowning: Effectively passing the buck to the dietician and so we reminded her that she had had a conversation with us recently in which she had advised a hard stop of the omeprazole and is it not the case that this is the reason why we have this problem? Of course as soon as we said it, it clicked and she said, that is a good point and she can put Mum back on the PPI and defer the dietician referral :astonished_face:

That is how dire things can be when you take everything you are told at face value.

In closing, we will reintroduce the PPI on a short term basis until we can safely transition Mum off it.

Just to reassure you, Mum is not hugely adversely impacted by this, but she has had to endure some discomfort as a result of the acid reflux and wind.

It’s your life, your body. Try and take and keep control and {personal experiences] don’t believe everything your doctor tells you :slight_smile:

Part 1 can be viewed hare

:pray:

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As you are well aware you do have to challenge the GPS sometimes. I think we often take what they say as correct and after all they are only human and they have a lot of ailments that they have to know things about so it’s hardly surprising from time to time they make mistakes especially if they are new to it.

I hope putting your mum back on omeprazole for a period of time and then taper her off gradually will help resolve her reflux and trapped wind issues. I know when my sister was coming off omeprazole she also tried just to stop it and had very similar issues and had to go back on and taper off gradually. She no longer takes it.

Here’s to things settling soon.

Ann x

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Hi Ann - It would help us tremendously if you could tell us how exactly your sister came off omeprazole. I know this is how Mum would want it and if she was able to do it herself, she would already have done it and stuck with the “Cold Turkey”, but it is not very nice to watch her going through that as it’s a choice we’re making on her behalf. It may sound strange, but we are actually doing just as she would do or would have wanted, yet because we are making that choice on her behalf it is that much harder to watch. But tapering off will ease the pain and get the result she would ultimately want.

She is currently on 20mg once a day (having come down from 20mg twice a day).
We would have liked to have gone down to 10 mg once a day, but her rookie GP is not playing ball and so as not to “rock the boat” we will indulge her for now.

Thank you for your continued support and advice - very much appreciated.

:pray:

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I was on Omeprozol for 3-4 years, one a day every day; right up until the day I had stones removed from the bile duct. I just didn’t need them after that so I just stopped taking them and never had any issues with stopping them so suddenly.

It’s not an addictive drug as far as I’m aware of. I’ve only ever heard term “cold turkey” for those coming off drug or substance abuse due to addiction. And your mum is not a junky :wink::grinning_face_with_smiling_eyes:

What I do have my doubts about is why you’d take your mum off Omeprozol. If the stomach lining has been damaged from the aspirin she’s been taking, how do youknow the damage to the stomach lining has been repaired yet? That can take months. Maybe you just took her off too soon?

Lorraine

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Hi Lorraine - Thanks for chipping in :slight_smile:

If truth be known, nobody really knows what has happened to Mum and nobody has explained what they have done and why. Any tests that have been done have been high level and so it is not as if specialist equipment was used or even something like an endoscopy (probably considered specialist) was done to ascertain why she had black stool which was the main reason she was admitted to A&E and which led to her being taken off the asprin and being put on omeprazole.

It was my and my sisters logic that led us to the thinking omeprazole was being used to repair the damage done by asprin - what asprin does to you is documented and also it was concluded from discussions on this forum that six years ago when Mum was put on asprin post-stroke she should also have been put on PPIs to counter the [undesired] side-effect of asprin.

I have read the latest Manufacturers leaflet that came with the new prescription and it makes interesting reading. I have uploaded the section that explains what it is used for and for how long it should be used.

Omeprazole Mfg
Omeprazole Mfg1500×1500 520 KB

The section “3. How to take Omeprazole Oral Suspension” lists seven uses (Use in adults) and lists durations from one week for e.g. ulcers caused by heliobacter pylori to eight weeks for e.g. stomach ulcers that have not fully healed.

So immediately, the max duration I see here is 8 weeks. I note that if after 8 weeks it has not healed, the doctor may double the dose to be taken for a further 8 weeks (so say 16 weeks in total).

From the above, I conclude that the maximum time on this medication would be 16 weeks.

Mum has already completed 12 week course and she has only ever passed black stool on that one occasion which led to her being admitted to A&E. Before she was discharged after 3/4 days (I’d have to check but it was less than a week) she had stopped passing black stool.

So omeprzole given because of black stool (stomach ulcer bleeding). This has stopped so omepraole can be stopped.

That’s the logic we are applying.

Mum has not been checked by doctors to see if the lining has been repaired and the only question they ask is is she passing black stool. The answer is no, so why is she still on Omeprazole.

Cold Turkey
This came from research that my sister did and which she shared with me.
Also, we are aware that some steroid based medications also require a tapered coming off i.e. don’t do Cold Turkey.

It is generally safe to come off omeprazole for many people, but you must consult with your doctor or a healthcare professional first. Abruptly stopping can cause a temporary but significant return of symptoms due to rebound acid hypersecretion, which can be worse than your initial symptoms.

The abruptly stopping is what I am referring to as Cold Turkey.

With all that said, Mum is not easy to care for since she cannot verbalise what she wants to say, but we’re getting there.
She has been “Cold Turkey” for two weeks or so and has had a few bad days (may or may not be related to the PPI).

Yesterday and today she is more settled and so we may have to play it by ear as to whether to use the newly prescribed PPI or consider it case closed.

Lorraine - I appreciate what you’re saying and if it was not for Mum being “mute” I wouldn’t worry so much. The doctors haven’t got a clue (and they have proved that - I already noted this in other posts) and so it really is up to the family and Mum herself to work out what’s best for us.

Don’t forget - hospital doctors keep telling us not to take her to them.

Sorry it took so long to try to respond to your point about you being on omeprazole for 3-4 years and did a hard stop. I note your situation was slightly different in that

So was your problem solved by removal of stones from the bile duct, a condition which we do not believe to be the case for Mum.

Thanks again for making this an interesting discussion.

:pray:

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If I recall correctly my sister started by reducing from two a day to one a day and then started taking one every other day and then move to one every three days etc until she got to the point that she was taking them so infrequently she knew she didn’t need to take them anymore.

She was on them for a different reason to your mum though. hers was something to do with her gallbladder and she also had an operation to remove her gallbladder. She was still taking them after the operation though and that was when she had the issues after stopping them in one go rather than tapering off of them. As far as I am aware after she tapered off of them she no longer had any problems.

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I don’t discuss pharma as a rule BUT always ween off medication ; it’s called tapering. Think of it this way ; The body has reached the best homeostasis it can reach WITH meds, then it has to reach WITHOUT. That cannot happen overnight

R

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Hi Roland - I agree and I take into consideration the duration e.g. if taking a few tablets for a headache or something for up to a week then stopping is not likely to be an issue, but when you take something for weeks and it’s potent (high strength) etc. then tapering off has to the way for the reasons you suggest. Also, manufacturers leaflets do give this sort of information e.g. steroid based drugs etc. cannot and should not be stopped abruptly.

The saddest thing of all this is that we discussed this with the GP and she actually said “We don’t taper off omeprazole” and suggested a hard stop if we wanted to come off.

I am sorry, but for me this is a big mistake on the GP and the surgery that employs her. If you are going to make statements like that you should be able to back it up. It is just my view, but it is not often that I get things wrong, but this was a person who thinks they know it all because they (in this case) went to medical school and have a piece of paper to say they did so. Totally unproven in the field and likely to be a disaster (imho) if they continue to practice int this manner.

Luckily for us we have been on our guard and prevented serious consequences and Mum is such a tough cookie so that helps.

I might write to the practice manager to see if they might consider some additional training for this GP on how to arrive at decisions, or I may not as I do have smaller fish to try :slight_smile:

:pray:

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Hi Ann - thank you.

Of course, we have as usual been keeping an eye on things and note Mum is already happier (without the use of omeprazole) and a lot more relaxed both during the day and at night :slight_smile:

This even with a hard stop (red herring?).

The fact she is more active - “walking” and edge of bed might be helping too?

Also, most of her problems tend to be wind related - she suffers so much from trapped wind (but only post stroke) and we have put our heads together and are thinking:

  • cause of wind?
    ** Omeprazole :white_check_mark:
    ** fibre (HyFiber :white_check_mark:)
    ** low activity :white_check_mark:
    So we have increased activity, stopped omeprazole and put HyFiber on hold.

Now that might be high risk as its making three changes at once and so it might make it difficult to pinpoint root causes but if needed we can adjust as we go along.

For now, it’s just great having Mum back :slight_smile:

Thanks for getting back to me with the tapering off info.

:pray:

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All of those are likely culprits & the actions you have taken may just help. It willbe great if they do as your mum will be so much happier which in turn will make things better for you & your sister.

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If your mum was 20 or 30 years younger, the doctors would have had a cameras down…and up…from both end as I had. They’re not pleasant I can assure you! In fact they are quite painful, mainly due to the air they blow in for both ease of passage and to get clear imagery. And if they had to sedate her, that’s a greater risk. They probably won’t take that risk considering her condition after the stroke.

It’s a shame it can’t be thoroughly investigated because it leaves you all in the dark as to what’s the best way forward for your mum.

I remember one time in hospital, a student doctor came to me in the middle of the night to examine me. And at the end he was quite adamant it was my appendix. Tried to convince me the pain in my stomach was was referred pain stemming from my appendix. Next morning when the consultant came round with all his students, including my midnight visitor, I’m afraid I just had to drop him in it with his boss, the consultant. I didn’t see him again after that but I hope he remembered the lesson :face_with_hand_over_mouth: Lovely guy though :grin:

A few days after that I had an endoscopy, doc saw 2 “bubbles” in the bile duct (that’show they appear on camera), stretched the opening of the bile duct into the stomach and the stones and the stones released into the stomach. Thankfully, I’ve never had any issues since, no more helicobactor virus and antibiotics every few months, no stomach ulcers, no more crippling stomach pain, acid reflux, no digestive issues, nothing. And I’ve never had to have my gall bladder removed.

I had these procedures with anesthetic because I’m nosey that way, I get see everything. And gives me better understanding and perspective of what’s going on inside me, I’m just not squeamish that way.

I feel your mum would benefit from an endoscopy but I don’t know what the risks would be to your mum. Without getting a camera down you are all in the dark, winging it her treatment.

The thing with stomach issues such as ulcers or stones, the symptoms are not constant, they come in waves, and can range from once every couple months to once every couple days as it worsens. So when your mum was feeling good after coming off Omeprozol, that doesn’t necessarily mean she is over anything. So you can’t even say she’s suffering cold turkey.

It’s when these waves become more frequent, as every few weeks instead of months, and all the usual managing methods stop working, that’s when you know there’s something more serious going here. My mum went through it for many many years. Once a month she’d be out of action for a week once a month. And back then there was no such thing as endoscopys or keyhole surgery. Everything was done by investigative surgery, her stomach was like a road map of scars. Thing’s have come an awful long way since back then.

I really do feel for you all, to know whether you are doing the right thing or wrong for your mum, I don’t know how you do it. :people_hugging:

Lorraine

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a proton pump inhibitor is an abomination

they perform a powerful, fundamental override of a key bodily function

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Lorraine - thanks for the detailed insight and sharing of your experiences including those of your Mum. You are absolutely right about the endoscopy and in fact that is how one of the doctors doing the rounds explained it i.e. that it might be stressful for Mum and she would likely need to be sedated which might be a risk in itself.

However, (you know there is always an however with us :slight_smile: ) her obs that they were monitoring as a prerequisite to determine if she would be a candidate showed she was well within the required levels and in fact the doctors monitoring the obs kept telling us the same. So effectively this was saying Mum would qualify for an endoscopy and that is what we expected. Why? Mum’s biological age is 20/30 years younger than her chronological age - it really is and the obs prove it, surely they do? There is no weakness - her ECG was fine, BP, O2 levels, sugar levels and whatever else they need to tick off were ticked off.

It’s just that this hospital has pigeon holed her and they refuse to look at the facts and the actual results and even what we are telling them. A major stumbling block is one of her consultants has previously (and wrongly), two years ago ruled out surgical procedures and he is still in the picture. The reason why Mum did not get the endoscopy is because he will have spoken to the consultant dealing with this problem (it slipped out during the conversation that they had spoken and hence it was why the change of tune from she will get a proper examination to let’s keep it safe and deal it in a precautionary manner).

Btw - this “I did it /do it because I am a senior consultant and because I can” has also come up on another recent post by one of our new members whose story is similar to ours and who you will have seen (I will not name tag her as she is already dealing with her own issues, but you can easily look this up - it’s the “Private therapist” post by Lynne26). I felt bad for her, but what can you do. All we can do is post on here and so when others read it, perhaps in the unfortunate event it happens to them, they have something to work with.

The way to address this is to lodge a formal complaint, but right now, we feel it will drag on and distract from the care Mum is getting and so we must do what we can as best as we can and we are thankful that Mum is more than capable of dealing with this as she has been for the last 6+ years.

Professional incompetence and “arrogance” is one of my pet hates but there is not much we can do.

For us it has been a massive experience, like nothing else we have ever done before, and we have tried to document it here in the hope it will help others, but it will not be easy as the system is broken and there are no willing sponsors to take on the challenge.

@Mrs5K - thanks for your comment.
We’re just doing what have always tried to do and somehow we seem to stumble along. One day we hope someone will benefit from what we are going through - it might even be us :open_mouth:, though we will be battle hardened by then.

Thank you both for your input.
You will be pleased to know, Mum has been very settled all day - she did have some trapped win and she did bring it to our attention and we did sort it. Right now she is relaxing and having her late tea :slight_smile:

:pray:

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It’s a friggin’ nightmare :frowning:

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