Still struggling

Hi guys. Just thought I'd post an update for anyone who remembers me.

15 months post NF now. I'm in hell. No improvement on severe burping and throat burn. The throat burn is almost constant. Sometimes it feels like vomit, sometimes like soap. Earache is always present.

Food is weird, some exacerbate things terribly but almost all foods cause issues. I'm back on rabeprazole just as an experiment. All the tests show no acid or reflux. I've had gastroscope and motility along with ph monitoring, all post op. Results show no acid.

One experience I think is significant: I went to eat a herring in dill sauce. I opened it and it smelled strongly of pickles, really pungent. I was worried so I took a toothpick and dabbed the tiniest drop onto my tongue. IMMEDIATELY, the vomit throat feeling filled the back of my throat. Needless to say, I didn't eat the stuff but the throat burn lasted hours.

I've tried lots of things over the last decade. PPI, domperidone, Gaviscon, antihistamine, metachlopromide, amitryptiline, alkali diet as per Dr Koufman, avoiding triggers, diet mods, and finally, NF. Been tested for coeliac and gluten allergies along with other intolerance tests through biopsies. All negative. Had barium X-rays, gastoscopies galore, tested for H Pylori.

I'm now self medicating with OTC painkillers which contain codeine. I figured since it helps with cough it could help with burping. It calms things and helps with pain so I can live instead of rocking in a corner in agony, which my poor kids have pretty much grown up with. I'm just scared I'm going to get addicted to the codeine. But what choice do I have, what other way to get on with life while I wait for answers?

I'm now convinced I'll never get an answer to this.

Hi zeldagoblin,

I remember your surgery was right after me. I found gas is my biggest enemy. I have experienced the throat burn but as soon as the gas goes out the back door, the throat burn disappears. Did you check for allergies? Try Carafate. Hopefully, that will settle the burning sensation.

Michelle

zeldaglobin,

I was told there is no reversal. It is even worse if you go back. I noticed a lot of the individuals who heal fast from this surgery seem to have no lower gastric problems. I understand the earache. On occasion, I will experience an ache that will run across the chest, up the neck, behind the ear. I assumed it was the vagus nerve. Gas always accompanies this sensation. It sounds like you are very sensitive to food now.

I hope you find the problem soon. Take care of yourself.

Michelle

zeldagoblin said...
I don't think I can get carafate in the UK but I will ask. It occurred to me today that my health has been the worst it has ever been sine the op. I was thinking of asking the surgeon if it's too late to reverse it. I honestly think it's made matters worse. The burps do make the burn worse but the burn is pretty much constant lately.

He offered a reversal if I was unhappy with the side effects.

Thanks for thr reply, I am just feeling utterly despondent and isolated with all this. I fear every new day, it's no way to live.

You can get carafate in the UK, it goes under the generic name sucralfate.

I would be careful with codeine, it slows down GI mobility so can make bloating and reflux symtoms worse, but i understand that sometimes you just need some relief, its hard to balance.

Sorry to hear your having such problems, not sure what to advise personally as ive never had throat problems myself. I hope you get some relief soon

I just want to say that I am sympathetic towards you. This is an awful thing to live with :( I hope you feel better soon.

The biggest issue I have had since the very beginning is that there has never been any evidence of acid reflux, despite one finding of a weak LES. The next test refuted that finding. Before the fundo I had the ALL the tests numerous times. I've had gastroscope more times that I can count, bariums, motility and impedance, ph testing, both with single and dual probe. So all the hard data says "Liz doesn't have acid reflux." They agreed to the surgery as a last resort since nothing else was helping. PPI do ease the vomitty throat feeling but everything else is still a problem. Btw, after the op I don't vomit, I just feel like I have because my throat burns just like it does when you vomit. It also feels like soap. So after the surgery I've had two gastroscopies, impedance, motility, ph probe and pepsin test. All say no acid, except the pepsin test as I haven't had results from that yet.

The one thing that helped was amytriptiline. I'm hoping to get that next time I go but more than anything I just want to know what's wrong. And my life back and maybe to salvage what's left of my youngest son's childhood. The eldest is grown, having had to do without a functioning mother for the entirety of his teens.

Sorry I'm so negative. Its not that I am sick, I can deal with pain and illness. It's not knowing why, or how to even manage it. And the sheer wasted years suffering so much.

Thanks for the support, i really appreciate it.

Hi there, Ying

Nice of you to ask how I'm doing. I'm no better, sadly. I wish I could say otherwise.

I do have new knowledge, however. I recently had an incredible migraine attack like I've never experienced before. I do get them, but this was the worst. I had four hours of vomiting attacks. The retching was violent, causing terrible body spasms. My body wanted whatever had triggered this out of my stomach. But after four agonising hours of retching, not a single minute drop of stomach acid came up. I had a sick bucket full of nothing. So I now know for absolute certain that the vomit sensation in my throat is definitely not vomit.

I've been sent to see a dietician, who is just as baffled as I am, but she wants me to have a kind of open door ticket to have scopes or tests when I'm actually having a bad flare up.

No real answers as yet, and my marriage is finally over. After ten years of having a sick wife, I guess he just wants some fun and happiness.

Hope you and yours are well and happy

Liz xx

Hey Liz,
Just wanted to say I relate to your struggle. Its really frustrating to not know whats making you sick.. that's what bothers me the most about my health situation right now too. I hope things start improving soon for you and for all of us. Stay strong.
Brian

Liz that is terrible to hear your husband left you...I have been extremely ill for 7 months straight with stomach probs n the laughing part is it all could have been stopped in tracks had the infection in my tummy been detected sooner...to put it mildly what a bunch of idiots in hospital where i am young n dumb !!! All signs were there yet they just kept saying gastritis but there was an infection there too...It near killed me.

Hang in there. You Will get to the bottom of it. I know illness is not a choice n ppl think your just putting it on its awful. Have u been tested for h pylori? N take motilium for that dry wretching i had that its awful n very wearing.

You could have infection parasites or candida believe there is always a reason they just havnt found it yet..I wouldnt be depending on doctors too much get your own tests too there are health n private clinics that test for all this sorts stuff.

Good luck.