Cannot cope anymore - DESPERATE DESPERATE DESPERATE

Hi everyone,

Right I'll give you the whole story.

I'm 28 years old, male.

Ten years ago I started suffering from heartburn and discomfort and I have been treated ever since with a variety of medications. I've gone between lansoprazole, omeprazole and ranitidine mainly and found omeprazole to be the most consistent. There have been other things along the way. There was a period of a few years when I spent a LOT of my money on pepcid two because the medication sometimes just didn't touch the symptoms but that was a few years ago now.

Eventually after a lot of begging, getting the same answers and finally getting a new doctor who listens I was sent for a gastroscopy (which was worse than my worst nightmare) and it was discovered that I had H. Pylori. I was given a course of antibiotics and it cleared up within a week. Part of me was so angry because I had been ignored and suffered that way for five years, the other part of me was over the moon, I had a new lease of life. I still had to take my PPI's daily for heartburn but the bloating, nausea and discomfort were gone or at least minimized. That was in 2007. Within a couple of years I started to get similar symptoms so I was sent for another gastroscopy which I could not tolerate. The specialist got to see up to my LES (or LOS if you're from England like me) but never entered my stomach. She said what she saw was healthy but sent me for a blood test to screen for H. Pylori, it came back negative.
My symtoms have been uncomfortable ever since but this last few months has nearly finished me off, I really can't cope at all any more and  and I'm not only frightened of living the rest of my life like this, I'm frightened of it getting progressively worse like it has over the last few months.

In May this year I was already starting to notice my symptoms worsening rapidly when I caught the absolutely hellish Norovirus from a friend and so followed the worst 15 hours of my life and now I live in fear of ever catching that thing again. My gastric problems have been slipping fast ever since then.

I started to believe I had an ulcer because of the severity and fast onset of these worse symptoms so I got my doctor to agree to send me for a barium swallow due to my inability to take the gastroscope. The test showed a weak LES and spasms, no tumors or ulcers.
I don't understand though how these simple things can be the cause of my terrible symtoms being as though I've had problems for years but never this bad.

Right, now for my symptoms;

No heartburn (but I would if I stopped the omeprazole for just one day)

Severe constricting pains in my chest, mostly in the centre behind the solar plexus but also higher and often to one side or the other (they're very random and unpredictable) but never in my back or shoulders

Very strange "appetite related" phenomena: sometimes I feel hungry but feel I can't bring myself to eat, sometimes after I've eaten I feel empty and full at the same time, sometimes I feel bloated when I haven't eaten or only eaten a little, sometimes I feel very, very full after only a mouthful of food, I also often feel like I have to force food down when I swallow and feel like it just suspends in my oesophagus. All of these feelings are very hard to describe.

I often get chunks of undigested food shoot up into my mouth when I burp

I feel strongly nauseated all day every day

I have a constant feeling of pressure/heaviness in the centre of my chest and i try moving about and streching to relieve it but it never works despite feeling like it's what I need to do

Drinks feel like they're getting jarred on the way down and I have to pause and wait for it to free up before the next gulp.

I have had the blandest and most soothing of diets, eating things like yoghurt, salad, jacket potatoes, steamed fish, white meat, very simple and gentle meals...with the exact same symptoms, so it is not my diet.

The specialist said nothing about strictures or pouches or tears in my oesophagus, nothing about diffuse motility. Just what I shared.
My doctor has now prescribed me with mebverine for the spasms, I take one 20 minutes before eating. I also have metaclopramide for the nausea but these make me feel exhausted. Neither of these medications do a great job and my doctor's reluctant to give me other medications such as nitrates due to dangerous and highly unpleasant side effects.

What are my options here...am I missing something, are the doctors missing something? Does somebody out there know exactly what's going on? Same story maybe but with more answers? Should I be having more tests? A second opinion on the barium swallow, a CT scan?
I've had my heart checked thoroughly, it's fine. I also had a FULL MOT blood test before the barium swallow, all was clear apart from an indication of a gastric problem but that was brushed over.

I don't drink, well I can't because of this. If I drink I'll feel very sick after just a half and if I have one or two I'll feel like I'm going to die so I avoid it, and caffeine.

Should I consider the esophyx or something...

Sorry for the amount of questions and the huge length of this message. I just hope and pray that someone sticks with it and reads the whole thing.

Please get me some answers, I'm running out of options here and I REALLY don't want to reach my last resort.

Thank you all in advance,

Travis x

Edit:    Discussions of  self-harm are not permitted in the forum.
 

Post Edited By Moderator (stkitt) : 10/30/2012 9:00:10 AM (GMT-6)

Hi Travis

I'm in England too.

Have you had an endoscopy, manometry test and 24 hour PH monitoring tests yet?

If not, you need to get your GP to oredr you these.

I had really bad heartburn, chronic coughing and upper chest pains too and was taking an ever increasing amount of meds too (I even remember going into a pub and asking them for a mint cordial as I had run out of rennies and couldn't stand the pain) so I pushed for the above tests after finding an obscure article on the internet (this was 9 years ago, and I wish this forum had been there then!).

All the tests came back to show my LOS/LES wasn't working and I bad acid burning on my oesophagus.

Because of my age (35 at the time) my GP was quite sympathetic and offered to refer me for surgery. I had this done at the James Cook University Hospital in Middlesbrough in 2003 and 9 years in and it's still going great.

Push your GP for the tests above, and if they come back positive for GORD/GERD then weigh up the pros and cons of the operation and tell your GP what you want when you have decided - if they try to suggest the op is rationed make a complaint to your local Primary Care Trust (PCT) PALS (Patient Advice and Liaison Service) adviser.

Hope this helps.

Les.

It sounds like you could be a candidate for the Nissen surgery. As stated, get the tests and go from there. Have you tried Gaviscon? That helps a lot for some people. Have you tried any natural remedies?

You sound like me. I feel hopeless. I've gone to a 2nd GI doctor, I have an appointment with a 3rd and with a surgeon about the LINX surgery. I hope somewhere I can get a real answer because living like this isn't going to be an option for the long term. My quality of life (and sounds like yours) is in the crapper!

You said you couldn't tolerate the endoscopy? Do they do it different in the UK than the USA? They knocked me out so I had no idea what was going on. I just went to sleep and woke up drugged up. Slept for 4 more hours and was better.

I have the same issues with the LES being open too. It's frustrating. I am trying to see if I can get the manometery test and ph balace tests - both don't sound fun, but neither is daily life :/

Good luck!

Hey everyone, back again.
I'm so confused about my symptoms, just wish I had a definitive answer.
Although I've had this for so long, I've only just recently found out how complex the pinning down of a diagnosis can be. Descriptions of peoples symptoms seem so vague sometimes and it's hard to know whether what your feeling relates to what another person has described and one minute you might think, aha that's it but after reading you feel like you're looking in the wrong place time and time again.
I'm paying extra special attention to my symptoms every time I feel uncomfortable or when I do something such as swallow or move about.
I've just taken a drink of water and sat upright and still while I focussed very carefully on how it felt and what I felt was happening inside me. I noticed some peristalsis in my oesophagus but it was hard to tell whther it was uniform or not, it was certainly uncomfortable and pressured. The most obvious effect was that my oesophagus stayed cold for ages and I could feel liquid at the back of my throat. This was immediately after drinking and lasted a few minutes. During this time I had jumpy kind of spasms low down, at the LES junction and a strong desire to burp but couldn't.
Now to me this would suggest achalasia but it seems contradictory to the result of my barium swallow when the radiographer said I had a weak LES. I asked my doctor if with this result it could still be possible that I have achalasia and he said yes but not to worry as it generally affects an older age group. But I've just read that it can happen at any age though pre-adolesence is unlikely and that the age range is between 25-60, well I'm 28.
I'm now wondering if it is possible to have achalasia but it doesn't show on a barium swallow...perhaps because of the change in eating habits for several hours before the test, or perhaps it just didn't happen at that time. Eiether way, he did say I have a weak LES so I'm not 100% on this, I'm just wondering if it's possible.
Perhaps the fluid in my oesophagus is there because of oesophageal spasm, perhaps a temporary "dead end" is created and the fluid sits above that until the pressure dissipates and the fluid can move beyond it. I frequently feel like this when eating or drinking, kind of like food/drink is building up inside my oesophagus making me feel over full and causing an incredible amount of discomfort. I often have to push myself through a meal and then feel awful afterwards for some time.
I just wish the radiographer had concentrated more on my oesophagus and not my stomach. I think further testing is a definite plan of action and I would love to sit down with a specialist but thus far, after a decade I have not been offered this opportunity.
Sorry for the random whinge guys, just feeling particularly at a loss today.

I hope one day I can have a wonderful success story for you all. Until that day though, I'm still living the nightmare.

Ciao

Gastroscopy in the UK is usually done with light sedation - 3 mg of Medazolam. You are not asleep, just sedated a bit. The pain of the scope hitting the back of my throat was so bad I woke from the sedation but couldn't open my eyes or communicate. They had to go up to 10 mg to continue, but that night I had flashbacks. I now only have this procedure under GA. I'm in the UK too - I just don't give consent to sedation now.

I would like to know if with strong painkiller and sedation I could manage it, but I'm not due one for a good while now.

You can insist on GA. And you could also ask for manometry and pH monitoring, though the manometry is also a toughy if you have problems with the scope! I managed it - just - was extremely painful and I could have done with some Valium!! Still, if it may open doors to Nissen, it could be worth it!

MMM

Dragon do you feel like a presure in your throat? Have you any sinus and ear presure? Your hungry and fullness symptoms seem like mine if you find something that helps let me know i will do the same. Do you have breathing difficulties?

Hi Stationdragon,sorry your suffering so much.You need to get a manometry test done to see how your esophagus is moving.Your symtoms sound like you have some sort of motility problem.You can have a hold up of foods or liquids in your esophagus which can be very uncomfortable. Also a barium swallow would be helpful in diagnosing whats happening.Both tests are quite easy to do and only take around 20 minutes each.Good Luck! Barry