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Staying on PPIs and pathway advice?

Posted , 6 users are following.

Sdfuk
Sdfuk

Hi all

I was diagnosed with Barretts Oesophagus on 19-02-15 (sort segment 1cm) and subsequently I was put on 20mg omeprazole x 2/day for 2 weeks. In the following 2 weeks I have cut this down to 1 per day.

Would I be ok to stop Omeprazole completely as I have only been taking this PPI for 1 month?

The reason for doing so is that I would like to discuss with my Dr about having a manometry and 24 hr Ph test to determine the strength of the lower oesophageal sphincter (LES) and assess how much acid is coming up. (My GI specialist has stated that I have no hernia and the LES "looked" ok).

If the manometry results shows a normal LES then there must be other factors causing the reflux. Literature shows that one should get tested for:

1) H. Pylori (some argue for and against the link with GERD). 

2) Celiac and gluten sensitivity

3) Food sensitivities

4) Bacterial overgrowth, yeast overgrowth, and parasites

Small intestinal bacterial overgrowth (SIBO) seems very plausable to me as in the past i have eaten a diet high in carbs/sugar and my stomach seems bloated. It is argued that the malabsorbtion of carbs (due to low stomach acid) creates gas and intra-abdominal pressure and thus reflux. Low stomach acid is the problem in this case and PPIs only serve to reduce the acid and hence your are stuck in this vicious cycle.

I hope once ive done these tests I can then determine what diet I should actually be on. At the moment I am on a no caffine, low fat, no alcohol/chocolate and eating more fruit/veg (high carbs) diet as recommended whilst taking PPIs.

If the above (SIBO) theory is correct then this diet is only adding to my problem and I should actually be limiting the carbs.

If I could get to the stage whereby no acid was coming up I would probably consider ablation of my BE even though theres no dysplasia.

Thanks for any advice and if i've missed anything out please could to add it to the discussion.

Cheers

S

 

2 likes, 14 replies

14 Replies

  • AmandaFA
    AmandaFA Sdfuk

    Posted

    Hi,

    I have heard that you should gradually ween yourself off PPI's once you start taking them.  I have been on Lansoprazole for two months now but will be staying on this for the moment until  I know what is wrong/what can be done to help my acid reflux.  Maybe go on a lower dosage for a while and them come off it, if that might help?  I am quite new to all of the acid reflux business so it is all trial and error for me.

    Hope that helps.

    Amanda.

     

  • sirivinay1786
    sirivinay1786 Sdfuk

    Posted

    hi, I have had gastritis and reflux due to pylori.after a month of PPI (40mg dosage), I have cut down to 20mg without any issues. Do not stop the PPI suddenly, do it gradually and if you do not feel any reflux you should be fine. Alternatively, you can take Zantac while gradually reducing PPI so you don't feel too much rebound acid. Zantac is safe to use long term as well (if required for your barretts and you don't want to stay on the PPI). Have you been tested for sibo? If so, have you taken antibiotics for it? 

     

  • nfa
    nfa Sdfuk

    Posted

    I think it would be sensible to have manometry and 24 hour ph test/ and possibly a 48 hour BRAVO as well.

    I assume you must have had an endoscopy have gotten the Barretts diagnosis? Usually they automatically test for H.Pylori when doing an endoscopy, so it may be worth asking if they did do that test at that time, and just did not report to you as it was negative. However, they may not have done that test!

    I share your uncertainties/confusion about high or low stomach acid, and whether either can cause acid reflux/GERD, especially to the point of causing Barretts.

    I rather suspect the "received wisdom" by conventional doctors, especially now you have some Barretts, is that intense acid suppression is the best way to try to reduce further damage to the mucosal lining that has some Barretts segments, and generally that will mean PPIs.

    Of course, if you can reduce the reflux by the methods you suggest, that would be helpful too.

    Do make sure you get referred to a centre of real excellence if you are being assessed for possible ablation therapy. A top teaching hospital with an active research program would probably be best.

    Obviously I do not know where you are based, so you may need to ask around or do some on-line research; or ask your GP if they have confidence in where they would refer you.

    If you do get a referral for manometry and ph testing, the GI physiology service will tell you when to come off PPIs a certain time before those tests so the tests are done without PPI acid suppression. Thus you could wait until you have that referral "in the pipline" before coming off the PPI regime you have recently started? However, it may be you don't really want to take PPIs anyway.

    It is so difficult to decide from trying to evaluate the evidence for and against using PPIs!!!

    Another "tack" to ask about would be if it is felt anti-reflux surgery might reduce the exposure of your oesophagus in future, reducing your Barretts and other risks. 

    If manomentry shows your oesophageal motility and LES are strong, you might be able to consider the new LINX procedure, or failing that, fundoplication.

    Anyway, hope these thoughts might be helpful in the process you are going through.

    Best wishes.

    • Sdfuk
      Sdfuk nfa

      Posted

      Hi

      I had Barretts confirmed last Thursday, no dysplasia though which is good. I appreciate that the Dr is trying to protect the damage oesophagus but it would be really good to know and understand the underlying cause and try and get that sorted out.

      I didn't take my PPI today but just 1 ranitidine in the morning. As I've stated in other posts on here I do get chest pain and also pain just below the sternum but this has only occured after my endoscopy (maybe I have bruising or something). Before then I've never experienced and form of pain or reflux symptoms which is annoying as I could have made changes years ago and not have Barretts.

      I think the Bravo 48 monitoring looks good as then you're not wondering  around with a tube in up your nose. 

      I thought that if motility and LES was good then that would negate any surgery. I did look at the LINX procedure this afternoon and it looks interesting. I thinks it's about 10k though!!!!

      I do know that Southampton University Teaching Hospital has had God success with the patients undergoing ablation there. I'm based in Essex and I know that the hospital near me doesn't do it. A doctor I know said that they are putting forward a business case to carry out the procedure there. The main attraction of ablation is that your oesophagus will grow back its original lining. I think that they carry out surveillance on you.

      cheers for now

      S

    • wknight
      wknight Sdfuk

      Posted

      Did the doctor tell you to stop the PPI?

      No then get back on them right away and stay on them until the doctor says stop. The PPI can help heal the damage caused by the reflux. I would be concerned if I had Barretts as its a sign the reflux has been bad. You are not going to fix this quickly and why worry about all the scare stories of PPI when you need to get yourself better.

      Following my recent Bravo monitoring my consultant was very happy that I was taking 30mg a day and have been for almost 10 years and told me to continue with that dose. he is an expert specialising in this field and does it all day long so I trust his view

    • Sdfuk
      Sdfuk wknight

      Posted

      Hi

      You're right that the Dr didn't tell me to stop them but I will need to stop them for any ph monitoring that's forthcoming. The longer I stay on PPIs the worse the rebound effect will be when I do have to stop for ph tests. If the LES is compromised I'll be straight back on the PPIs.

      My post is really about trying to discover the underlying cause of Reflux rather than treating a symptom. I think my main problem is that I get chest pains even when I have been taking the PPIs which I feel is related to the endoscopy they did.

      cheers

      S

    • nfa
      nfa Sdfuk

      Posted

      Thanks for your reply.

      I absolutely agree with you about wanting to understand the underlying cause of acid reflux. However, the more I read, the more confused I get about the rather conflicting evidence, opinions and views!

      I too wonder about "low acid" rather than too much, and worry that PPIs may contribute to the problems. BUT I also worry what damage may be being done IF the acid is flowing up past the lower oesophageal sphincter!

      I can see your thinking about the motility and LES "status", but I guess, somehow reflux is still getting up and damaging your oesophageal mucosa to the point of Barretts, so some "reinforcement" might be considered?

      I believe some people on this site have got LINX done on the NHS, although there are not many NHS hospitals doing that procedure. I think one has to fight hard to get referred to the hospitals doing the procedure, and possibly your local commissioning group would refuse funding? (Again, try googling "LINX procedures on the NHS")

      As well as Southhampton, two other centres of excellence you might consider asking for a referral to are:

      Dr Rehan Haidry at University College London Hospital. I believe he is director of the National Medical Laser Centre, and is at the forefront of early identification of dysplasia in Barretts, and has a special interest/expertise in ablation/HALO treatment. (try googling him for more information)

      Also, Dr Jason Dunn at Guys and St Thomas' Hospital Trust is a specialist in ablation therapy for oesophageal dysplasia.

      Personally I would prefer to go to an established, experienced centre such as these, rather than trust myself to a new service, although I applaud that your local service is trying to put a business case to develop one.

      I imaging UCLH or Guys/St. Thomas' would be easier from Essex than Southampton  for you?

      If you could get yourself referred to one of these centres for a "second opinion" and the further gastro-enterolgical investigations you mention you would then be "their patient" and I imagine they would keep you on for surveillance and follow up, rather than you being forced to go to the local Essex service, if that gets set up.

      I am not meaning to be negative about the Essex possibility, but with this condition, I think it is time to put yourself first and go to the centre with the best track record and experience of diagnosis and treatment.

      UCLH do not currently offer the 48 hour BRAVO test, but if you went there they can ask your GP to refer to Guys just for the BRAVO test, then report back to your GP and consultant at UCLH.

      Hope these thoughts are of some help.

      Good luck!

  • clare71892
    clare71892 Sdfuk

    Posted

    This is a very interesting thread. I think my Barratts and condition is caused by ppis. Following bouts of horrible bloating for years ( no real heartburn)I had an endoscopy 4 months ago which revealed esophragitus and a hernia and was put on ppis. Then a follow up endoscopy the other week is showing possible barratts (awaiting biopsy results) and I've still got the esophragitus. So basically the pips are not working and the condition is worse. I've been doing the the right things too- raising bed, avoiding alcohol etc etc..... You sound knowledgeable on the subject so I wanted to ask is there any point in the 24 hour testing if I have a hernia? I have started to go down the food intolerance route and booked private fructose testing ( hydrogen breath test) as my bloating was worse if ever I eat fruit and raw veg. But I'm thinking now of getting the SIBO test done too.  I need to sort the underlying cause as we have 2 familily members who have had/ got esophrageal cancer.  With regards to the ablation is this something I would need to get done privately, as I can't the nhs doing it if it hasn't progressed? 

    Clare 

    • Sdfuk
      Sdfuk clare71892

      Posted

      Hi

      I've only been reading about this subject for the last 4 weeks but my background was in health economics and I use to review medical literature for a living so I guess that helps a bit.

      GERD in your case may be the result of your hiatal hernia which in turn can result from intra-abdominal pressure (bloating), although there are other causes, e.g. trauma, a weak phreno-esophageal ligament and pregnancy.

      I'd be interested to hear about the results of your hydrogen breath tests.

      Barretts Oesophagus takes, from what I have read, takes years to develop (5-10) so the PPIs are probably not the cause of it.

      As the PPIs are not working and If you are still getting gastric juices in the mouth then it could be the case that you need to repair the hernia (and sort out the bloating if that was the cause in the first place). Ph testing in this case may not be worth it as you know that you are still having reflux. Ph testing would make more sense after a hernia repair and/or sorting out the bloating. Maybe aks your Dr to change the PPIs

      It would be nice to think that you could avoid surgery by eliminating the bloating so the acid wasn't being pushed back up. You need to be careful at night when lying down. I bought a wedge pillow and some nights its ok whilst other nights im lying at the bottom of it. 

      I'm only stopping my PPIs as Ill see a Dr in a few days to discuss Ph testing and I want to be PPI free to do the test straight away.

      As for ablation, I know that Southampton University Teaching Hospital have had good success. I'm originally from Hampshire so the reason I would have it done there is that I could stay with family. NFA above has also recommended other hospitals that do it. 

      I wish you luck with you biopsy results. 

      Cheers

      S

       

  • wknight
    wknight Sdfuk

    Posted

    Actually you don't always stop them for ph monitoring which is why you should be following the advice on the doctor not trying to second guess. I had my ph monitoring while still taking the PPI because that is what the consultant wanted.

    I don't know why you are worrying about coming off the PPI's its not like anti-depressants where you have to come off slowly.  If you are worried go speak to a Pharmicst who is a drug expert and they can tell you its easy to stop a PPI.

    Forums are good places to chat but some of the comments can be based on one person experience rather than a scientfic study.

  • clare71892
    clare71892 Sdfuk

    Posted

    Hi. Interesting thread. You sound like you have a plan, I too am in a similar position and am looking into the intolerance testing. Can you advise would there be any point in me having the 24 hour testing as I have a hernia. It's just I'm convinced it's different from typical reflux that I'm getting, ppi s just don't work for me and although I'm getting reflux symptons now I never used too, before I went on them. My reason for my intial endoscopy was bloating problems. It revealed esophragitus and after 4 months of ppi treatment I've still got it plus possible Barratts. Can anybody advise about the ph testing. Also I'm losing 2 much weight, looking far too thin by cutting out all the recommended foods to avoid. What can I eat to put on weight that's suitable for Barratts and esophragitus? 
    • Sdfuk
      Sdfuk clare71892

      Posted

      Hi 

      has your Dr determined the cause of bloating? Perhaps you could ask for a hydrogen breath test to determine if it's caused by small intestine bacterial overgrowth. You could also try and cut out all grain and wheat or test for gluten intolerances.

      Cheers

      S

      Emis Moderator comment: I have removed the article that was pasted in full here as it may breach other website's copyright. Please do not paste whole articles in posts. You can exchange links via the Private Message service if users want this info.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • Sdfuk
      Sdfuk

      Posted

      Hi 

      My paste was moderated which is fair enough. Not allowed to copy whole segments. In summary, the tests you could have for small intestine bacterial overgrowth are:

      1) Lactulose Breath Test (LBT) (Distal testing (end of small intestine SI)).

      2) Glucose Breath Test (GBT) - proximal testing (start of SI).

      Google them and have a read.

      Cheers

      S

  • clare71892
    clare71892 Sdfuk

    Posted

    Thank you for the very useful info. I had the results back and I have got Barratts. A bit stressful as we have had/got 2 cases of esophrageal cancer in family. Although there is no found gene yet I am convinced there is a genetic link. I have booked both fructose and SIBO testing will let you know how I get on, there is a wait of a few weeks though. I have also booked a private appointment with my consultant. Anyway one further question... They talk about the lifetime risk of a person with Barratts getting esophrageal cancer is 1 in 33 for a women. Do you think that is including people who are under surveylance. Hopefully it can't be that high if you are under surveylance as cell changes would get caught and dealt with?

    thanks again for your very useful info

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