Long Term Reflux Sufferer - Advice Needed

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rosscouk
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Date Joined Sep 2012
Total Posts : 5
   Posted 9/23/2012 3:29 AM (GMT -6)   
Hi there,

I have been having ongoing issues with reflux for over 10 years now, I am 35 year old male living in England. I am not overweight and over the years my diet has got more restricted to the point where I am eating a low fat rather boring diet. Rice mile and porridge oats for breakfast, flat bread with salad for lunch etc.

I have had a number (5+) of endoscopies, oesophageal manometry and pH studies. They have basically confirmed that although 'the total duration of reflux is within normal range' I have a correlation between episodes of reflux and symptoms which they believe suggests I have oesophageal hypersensitivity. H-pylori is negative. Basically when I get reflux it hurts alot and I only need to reflux a tiny bit to be agony.

I have been on various medication but I am currently using Omeprazole 2x20mg (20mg 9.30 am and pm), Ranitadine 2x150mg before bed, 2 x 10mg amitriptyline, again before bed. I am not normal on this medication but I am getting close to control, although I still can't bend down, sit comfortably or lie flat. An issue when you have a 2 year old running around!!

My consultant suggested trying Gabapentin (in addition to the amitriptyline to reduce the neuropathic pain) which I did this week to disastrous effects with extreme pain which was caused by additional reflux attributed to the Gabapentin.

So I am basically at the point of trying to decide what to do next. I think they would do a wrap (Nissan) if I asked for it, however as my symptoms are caused by only a little reflux I am not sure it would solve the problem, anyone have any thoughts? I have also seen this new 'LINX Reflux Management System', which seems like it may be worth considering.

I am also trying various other things, currently using aloe vera juice to promote healing after the Gabapentin issue this week. And I am also trying Centaurium drops before meals to help with digestion. I am also waiting on some manuka honey which seems to have helped in the past.

Anyway, I will do anything to be normal again. If anyone has any advice/experience about whether a wrap is effective for hypersensitive eosophagus or any experience of the LINX system I would be grateful.

Thanks

theacidrefluxman
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Date Joined Oct 2009
Total Posts : 739
   Posted 9/23/2012 8:24 AM (GMT -6)   
Hi rosscouk,

What has been your esophageal mucosal state? normal?

Interesting post. We are in similar boats. I am 29 and coming up on five years of having reflux. Everyone I have ever seen has advised me against surgery because PH tests haven't shown a high amount of reflux. They think that after surgery I would have the same symptoms because we all reflux a little bit, and that is what I am feeling apparently. The only difference between us is that I have a low symptom index, meaning my heartburn doesn't correlate that well with actual reflux moments. Yours do, which is what would be expected from hypersensitive esophagus.

My Dr. was on the board that approved the LINX, and he said he was intimate with the technology and that it wasn't a good idea for me.

I have found some relief with Desipramine. The treatment of esophageal hypersensitivity with low-level antidepressants to treat the neuropathic pain is well established. I see that you are taking something similar.

I am just on a long-term wait and see approach to see how things go. I would love the idea of a surgical solution, but since every dr. and surgeon that I have seen has been against it I think it wouldn't be a smart move to go ahead with it. I could always go ahead with it in the future.

I know my odds of Barrett's are low, but I do sometimes remember that studies have shown that cancer risk lies in correlation with symptom duration, length and intensity. Yet according to my docs if you don't have barrett's, you can't get adenocarcinoma, so even though I occasionally remember this and worry a bit I think following Dr. advice is the best thing to do. Just find a Dr. you believe in.

rosscouk
New Member


Date Joined Sep 2012
Total Posts : 5
   Posted 9/24/2012 10:55 AM (GMT -6)   
Hi theacidrefluxman, thanks for the reply.

I must confess I don't know the 'esophageal mucosal state', I am assuming they would tell me that during the pH studies, if so, they said I was relatively normal. Basically, I am not sure, how would I know and what does it indicate?

Its a real conundrum whether to have the surgery or not, I expect I could easily talk them into it because of the high correlation between symptoms and feeling even though it is a relatively low amount of reflux. I do have a small hiatus hernia apparently, although my GP tells me lots of people do, with no adverse affects. I don't want to talk them into surgery and actually not improve anything.

In terms of the LINX, did your doctor happen to mention who it was good for?

I hadn't heard of 'Desipramine' but after googling it is says it is a tricyclic antidepressant which I believe is the same for amitriptyline. I wonder if it makes much difference which one you are on??

I worry about Barretts also, my Consultant has said I am not showing any signs, however when I am in considerable pain every day you do begin to wonder!!

My latest Medical Consultant has been quite good, we have spoken at length, but I do get the feeling that once you are outside the 'normal' they don't have much time to think about how they treat the more subtle cases.

Ultimately I am very frustrated with it all, living with lots of pain and reduced quality of life however there doesn't seem alot positive I can do. I try not to focus on it too much but its hard when there are longer episodes of pain. I am trying to be proactive, hence the posts here and I am also thinking of being tested for food allergies, but I do feel I am grasping at straws....

theacidrefluxman
Veteran Member


Date Joined Oct 2009
Total Posts : 739
   Posted 9/25/2012 6:15 AM (GMT -6)   
Hi rosscouk,

Esophageal mucosal state is learned during an endoscopy. It can either be normal, erosive esophagitis, or Barrett's.

If you are like most people and have a normal endoscopy then surgery isn't recommended. If you were to have Barrett's then surgery would probably be recommended I am guessing.

I feel your pain, literally. :) I also get symptoms despite treatment, but won't pursue surgery for the meantime as long as dr's advise against it.

My dr. didn't get into who the Linx was good for, but I'll ask next time. I imagine he thinks a small amount of normal reflux would still occur, and people like us would probably feel it. So we wouldn't notice a great change in symptoms like someone with a very abnormal PH test would.

rosscouk
New Member


Date Joined Sep 2012
Total Posts : 5
   Posted 9/25/2012 1:08 PM (GMT -6)   
Hi theacidrefluxman,

I think my endoscopy showed 'normal' and definitely not the other two states, which I suppose is good.

I don't think I get a huge amount of reflux, I am aware of some and I was able to pinpoint very accurately when I had the 24 hour monitoring. But to be worth having the surgery I would need to be reasonably convinced that a wrap would all but eliminate reflux to be sure I would see the benefit. Currently though, what ever I eat, I pretty much get pain around the LES regardless, so I guess with a wrap that might not be there?? Really, no-one knows and the only real way to find out is to have the surgery.

I have been reading about EndoStim, seems quite interesting, something which can supply small electric jots to the LES prompting it to stay closed, probably not describing it well and its in very early stages, but could be worth keeping an eye on.

theacidrefluxman
Veteran Member


Date Joined Oct 2009
Total Posts : 739
   Posted 9/25/2012 3:07 PM (GMT -6)   
Yeah, it is a tough call. I agree with you. A lot of who gets the surgery, I believe, is based on cancer risk. The general consensus is that long-standing heartburn without Barrett's does not increase that risk. So doctors play a more wait and see approach with people like us, despite the burdensome symptoms. But yes, not having erosive esophagitis or Barrett's in particular is something to be happy about.

Really nobody does know, so its a judgment call. Dencha (Denise), if I am not mistaken, worked hard at convincing her doctors for surgery based on a quality of life standpoint. She didn't have Barrett's. They did it even though she wasn't a "good candidate", and here she is on the forum to let us know how well it has gone for her. So don't think that you can't get the surgery. But it is up to you to push for it, and how hard you push depends on how much you can't stand the symptoms and how much you want to try it.

It is difficult because ultimately it really is up to you, your doctors don't feel your symptoms like you do.

rosscouk
New Member


Date Joined Sep 2012
Total Posts : 5
   Posted 10/10/2012 1:43 PM (GMT -6)   
Still trying to decide what to do next. My symptoms are much the same, still hypersensitive esophagus. I can have a good day or even a few good days but if I bend down after food, or even sit forward (leaning on your elbows for instance) I still get pain in my LES, which can last for hours or days.

I am seeing my consultant in December, and it seems that my choice is, stay on the drugs for good (which only control things for about 70% of the time) or push for a wrap, which may or may not solve anything as I don't think they completely stop reflux.

Anyway, getting desperate, I decided I would try and see if there was anything else I could do. I went and spoke to a what I would describe as a 'posh' alternative clinic (reflexology, head massage, mctimoney chropracti etc), I wanted to have a food allergy test. They made me hold something in a small jar containing something (not sure what) near my stomach button and then made me hold my arm out whilst they pushed down. Apparently they were looking for a intolerance to wheat (and with a bottle change) an intolerance to yeast, both of which were negative (as my arm stayed up under pressure) although it didn't seem a very 'scientific' test. The lady I was seeing said she didn't think I needed a food allergy test but wanted me to speak to one of their homeopaths, which I did. Although he didn't seem to have specific experience with reflux or similar, he did feel I would benefit from some acupuncture, cranial osteopathy and some hypnotherapy. They were very nice, not pushy, but I am not at all convinced that it would make any difference to anything, but, I am desperate. Should I go ahead?

Has anyone else used alternative therapies to good effect?

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 10/10/2012 2:54 PM (GMT -6)   
Hi there

I'm also in the UK. I'm no longer practising in natural medicine but I used to - just couldn't keep it going as a business! Having had a firm belief in natural medicine, having GERD came as a real downer because it responded to nothing at all that I tried. I take a PPI and go through terrible withdrawal if I try to stop. I've tried many different supplements, mostly to no avail. However, DGL (licorice) helps a bit, especially with nausea and I've recently found milk thistle helps my reflux symptoms quite a lot - I don't know if I have less reflux or just less sensation of it. I think like you I have some hypersensitivity as my pathology and symptoms just don't match up - I've had 3 scopes and none of them were that exciting medically!

I do recommend acupuncture - there are good scientific references to this helping. Nickles recently posted a good link to an article with an overview of natural treatments for GERD and you can see the report on acupuncture there. I've been having acupuncture since July - by August I thought it wasn't doing much but then in September I realised after almost a year of constant nausea I'd suddenly stopped feeling sick!

I'm by no means where I want to be, but the regular PPI, the acupuncture and the milk thistle have me in a better position than I've been for a while. It's worth experimenting I think. Let me know if you go for hypnotherapy - I haven't tried that!

I have a good osteopath who does wonders for my back and neck but nothing she's tried has helped my GERD. I would, based on the research, try the acupuncture and see what happens.

The 'test' you had was kinesiology - and it has no supportable scientific basis that I am aware of. I would certainly never use it for allergy testing!

I do sympathise. I keep being brought to the brink of considering surgery but as soon as I go near a GI consultant, even just with the agenda of discussing medication, I end up being scoped, followed by which they always say surgery would be an extreme solution in my case - hernia is small and my Barretts is tiny :-/

I'll bump up Nickles thread for you.

MMM

rosscouk
New Member


Date Joined Sep 2012
Total Posts : 5
   Posted 11/29/2012 4:23 PM (GMT -6)   
Thought I would update, I have been upping my dose of amitriptyline lately on the advice of a pharmacist at work (I work in the NHS). Apparently the dose I was on (20mg) was not really high enough to help with neuropathic pain, which may be a factor in the symptoms I experience. Anyway, I have been titrating up the dose and have just got to 50mg dose yesterday and results have been quite good. Definitely feel the need to use normal indigestion tablets less and it doesn't hurt so badly when I have a small burb (obviously a small amount of acid might be coming up). However, its not all good, today has seen some pain, although not sure why exactly. Anyway, I will plough on and see how I go, if things do continue i might try reducing some of the acid suppressing drugs and see how I get on.
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