Worrying symptoms

[ZM1980]

Hi all, I have had reflux for 15+ years and my symptoms have always been intermittent, but in the past 2 - 3 years, it seems like they have been worsening.

I get a burning feeling in lower left abdomen and left side of oesophagus, which gets worse after food. This is accompanied by indigestion, bile reflux, belching - all symptoms mainly affecting left side. I also have breathing difficulties, mainly shortness of breath, usually with incline exercises, sometimes on flat ground. Again, this is left sided, so I think possibly related to reflux.

I also feel like my digestion is slow and I have a bloating/fullness, even after liquids (water, tea). I almost always wake up with a sore throat. Recently I had some sort of cold/other virus, with very mild symptoms and it seems to have worsened my reflux - like there is a constant 'heavy' feeling on left side, with tightness and a dry feeling (in the oesophagus).

Last endoscopy in 2016 was normal, aside from a lax lower oesophageal sphincter and mild inflammation. I have been taking Lansoprazole 30mg daily since November last year. When I spoke to my GP, he said a referral for Endoscopy will have to wait, as it's a high risk procedure. Anyone have any advice/input? Surely the benefits outweigh the risks in this case?

To me it also feels like the Lansoprazole has worsened my dysphagia.

I am 39 years old, no family history of cancer, but digestive issues.

Thanks in advance

[Mauser1905]

Have a dig into my posts. I had my oesophagectomy due to early stage cancer when I was 40. You following same pathway like mine., unfortunately.

Just had dinner and out of breathe, so will get back later.

[ZM1980 in reply to Mauser1905]

Hello Mauser1905, I have read your earlier posts - sorry to hear you had to go through what you did. What were your symptoms leading up to your diagnosis? Were you on any PPIs/other medication to help control the reflux?

Best wishes

[Mauser1905 in reply to ZM1980]

Hi ZM,

Was in ppis as well double action gaviscon. Symptoms were worsening only. Was investigating by scopes for diagnosis and this was found by chance.

Sore throat is acid related, try echinacea tablets, helped me.

Indigestion due to ppis mainly.

Inflammation at lower GE junction evident of acid tissue damage.

Lax LES, can not be cured with any H2 blockers(tidine group medicines) nor ppi's (prazole). opa.org.uk/awareness.html

Have a read about LINX band which is good for less of HH as against fundoplication. But a quick remedial surgical fix can stop further damage.

Endoscopy being high risk????????? Playing waiting game with variety of ppi h2 blockers combination has fatal risk with definite outcome, than a silly endoscopy. Beggars belief some GP's attitudes. You have my analogue to convince your GP for immediate referral to GI team for fixing root cause issue thats HH and lax sphincter.

24 he ph test measures and gives continuous lh levels at the probe inside oesophagus. Manometry records pressure reading in a separate 10 min test. In both cases nostril tube inserted.

Rest upto you. Good luck.

Edit addition

The incline exercise pain. Its evident to me that sphincter is unable to hold the pressure put onto stomach and letting acid go in oesophagus. From experience. This also means when gas testing is done during your endoscopy it it will not hold pressure.

Yours looks to me acid reflux and not bile reflux. Easy way to check is to use litmus paper strip on back of tongue during the episodes.

Your LES require immediate anatomic fix either NF360 or LINX , no medication is going to help.

From self experience, every single word.

[ZM1980 in reply to Mauser1905]

Hi Mauser1905

Thank you for all the very valuable info. I will try Echinacea. I already take vitamin D, Zinc, Magnesium and at times, vitamin C.

When I had my Gastroscopy in 2016, GERD related inflammation was found, but I don't see why a follow up surveillance was not arranged or suggested. I was just told to try Omeprazole for one month and pro biotics. Following on from this, I have been referred back to Gastroenterology 3 times by my GP, but each time I saw a consultant, they just advised me to try different PPIs - which I kept on telling them, don't work for me.

I don't smoke, drink alcohol or have very spicy foods. I also don't consume much dairy. I did look into LINX procedure - this is something I may have to consider.

At present I'm taking Pantoprazole 20mg twice daily and Gaviscon Advance after every meal. This seems to help, but only to an extent.

My GP did advise me to call back this week, so I think I will ask for a referral. I've only had Endoscopies and a Barium swallow - never Manometry or PH - I believe these really should have been done by now.

The Litmus test sounds useful, will give that a try. Do you get the paper from the pharmacy?

Take care

Zora

[Mauser1905 in reply to ZM1980]

Hi Zora,

Apologies for late reply first time. Was wanting to use keyboard for typing longer one, but settled on mobile as was delayed.

I am currently doing a lot of DIY maintenance at home and consumes my energy and tires me out like crazy.

Yes litmus stripe you can buy online like amazon or local pharmacy. Its cheap.

Suggest try keeping a diary paper or digital. And record all the ppi and gaviscon with dosages and as well the reflux episodes. For reflux pain you can make a self made pain level from 1 to 10. 1 being benign with 10 being extremely severe. Each level corresponding to your ability to do physical work when episodes. For example the reflux with lax sphincter and or HH is triggered with pressure on stomach, like squatting and trying to mop the floor by hands using wipes. I used to get this trigger.

Please do this at least daily basis to get a graph or weekly episodes, as well monthly and chart etc.

Intention is to give objective dataset to GP and GI team to earn further diagnostics and perhaps LINX or NF360 surgery.

If on average your pin score is high enough to demobilised you then its affecting your quality of life at your age, requiring high mobility and intense activity levels. Thats undeniable for GI team or GP.

Have a serious thought on that.

Typically GP's have 10 to 15 min max per patient and its tough luck to get sorted. Same with your GI team if three referrals mean GP have been helping but GI team have not been picking your end. Next time be ready with objective data and provide in advance to GP to attach with their referral.

[ZM1980 in reply to Mauser1905]

That's ok, no worries.

Thanks for the advice regarding keeping a record of symptoms etc - I believe I too get reflux triggered by pressure on the LES, caused by movement - even walking on flat ground at times. I will mention to my GP that it is affecting my ability to carry out everyday tasks - as it is.

I would say my GP surgery has been very helpful in regards to my symptoms and hospital referrals - just sometimes feel that the actual hospital appointment with the consultant is frankly a waste of time and they usually give me advice which I am aware of already!

I will bring in concrete data with me next time.

Best of luck with your DIY and home maintenance!

[kiddy]

Hi i would ask your GP for a referral have you had blood tests? A barium swallow is possible which might help. By the time the referral comes through we may be out of COVID.

Also take gaviscon advance if you don’t already.

Best wishes

Debbie

[ZM1980 in reply to kiddy]

Hi Debbie thanks for your advice. At the moment I'm only taking Lansoprazole, so might give the Gaviscon a try. It's just worrying at the moment that tests and procedures are put on hold, but will probably email my GP to explain my symptoms in more detail and ask for a blood test.

I did actually have a Barium swallow a few years ago - with normal results. No Achalasia. I do feel I have slow gastric emptying/digestion, though.

Hope all's going well with your treatment.

Best wishes

Zora

[Harmonious]

I have taken 15mg Lansoprazole to control acid for years. 3 months ago I developed discomfort but right side and into back and I have been taking 30mg but the pain hasn't gone and as you say, no endoscopies being done at the moment

[ZM1980 in reply to Harmonious]

Sorry to hear that, it's worrying when symptoms worsen, especially when you are on medication already. I'm sure some of my symptoms worsen when I take PPI's - could be they are reducing the acid too much? I've read how low stomach acid can cause similar symptoms to over acidity, as it increases intra-abdominal pressure. Have you ever had PH Manometry to check acid levels?

[Harmonious in reply to ZM1980]

Thank you for your reply. No I haven't heard of that test and didn't realise that PPI's can make things worse. Wish I could have endoscopy. Good luck with your problem. Could it be GERD?

[ZM1980 in reply to Harmonious]

Thanks for your reply. I think PPIs tend to work differently for everyone - for some they help control symptoms completely, others only to an extent, but for others, might make some symptoms worse. I think my symptoms are GERD related, but strange I have a lot of left sided symptoms. Really want to have an endoscopy too - hopefully soon certain tests will start to resume. Good luck with your problem too!

[Sallyderek]

Hi There. I also have a lax sphincter and going to have surgery. I know they never used to like to do this surgery as it’s so close to vital organs. I think now that they are great success so ask for a referral to see a specialist. I suffer also loads of other symptoms and now realise that they are all related.

Take care

[Mauser1905]

its irrelevant to base the diagnosis in overall context only on the grade of the laxness of the sphincter.

I only had lax sphincter, one of the comments in one of the scoping I heard was "we have seen more lax than this" and I was diagnosed with adenocarcinoma within few months after that.

Endoscopy is in general without any issues, and I would challenge the GP's view of it being high risk. Unless specific to your case, which only you and GP must be aware of.

Opa.org.uk have useful information on reflux awareness, nissen fundoplication and LINX methods for resolving the root cause issue of Acid reflux. Please go and have a read yourself.

I was fortunately diagnosed for a early stage at the age of 39 and had surgery luckily. Having said that I suffered for way long due to GP's not taking my symptoms seriously.

Please push the referral for GI team and ask for long term treatment for your symptoms and not acid management with medicines.

Lax sphincter is anatomical issue(mechanical) and needs to be treated mechanically, and not chemically. The psychological (chemical inducement) element exacerbates the already existing muscular anomaly.

Good luck.