Hello to all
This condition is a bit of a hidden nightmare. I don't think people really know how hard it is to deal with the symptoms when getting strong. I have had minor effects for probably 20 years, but it really started 5 or 6 years ago and the effects are getting steadily worse.
I fortunately don't get to choking or gagging, but I have strong acid taste in mornings, even sleeping at 15% gradient in bed (which is the only effective gradient now)! 40mg esomeprazole doesn't seem to make things much better. I get increasing strong chest pains and pain in back between shoulders. It is debilitating and saps my strength. I now can not touch acid food without nasty consequences. I don't touch alcohol (almost never), I'm on a very strict diet to keep symptoms manageable. Its hard to sleep, travel and live any kind of sociable life with friends, and I'm just talking about staying over in a bed I can sleep in, or eating food they prepare. Holidays mean I have to find places with loads of pillows and then I cant eat most of the food anyway.
Colds etc cause complications that seem to stay down in the chest and are hard to go. I had a virus that lasted 2 years and its pretty certain that my condition worsened the virus effects and now I have tinnitus and sometimes a numbness in the sinuses and head and aching eyes that seem to be connected to the level of acid reflux.
It looks as if all of us sufferers seem to have a different mix of effects from our condition.
I'm seeing a leading gastroenterological specialist (Prof Annette Fritscher-Ravens, don't know if any of you know her based in in London) this week and the big question is should I still live with this level of suffering or take the risk of the Fundoplication operation? Personally I have had nasty events where recently I thought, that's it, you must push for an alternative solution (an operation).
It seems hard to tell from all your feedback what is the right decision. I don't mind suffering after, so long as it will lead to a marked improvement in the end.
Would love to hear your thoughts, especially from those with experience of the operation and results
Many thanks
Hi ben, I understand how you feel, being a fellow sufferer for many years!
However the last two years have been hell, my hiatus hernia has taken over
My life, constant chest pain, neck and shoulder pain and the most horrendous
Vile taste in my mouth constantly. Bed on bricks no spicy, greasy or fatty
Foods and nothing rich! I'm now gluten free as well...I take
No ppi's and manage with just gaviscon. Suffered with gerd
For 15 years and only recently been diagnosed with a 3cm
Sliding hernia. My specialist has advised against surgery and would
Like to hear how you get on with yours, if you go that route?
Eddie
.
Hi guys, yes many of those symptoms are familiar to me, mine are: the morning flavor of acid vile in my mouth always, litchi eyes in the inside corners for many years, I notice this when the immune system is low, almost always, I'v been having hiatus hernia for 25 years, used bricks in the up side of my bed but no
change had, many years ago had for a year acid re-flux burning in my esophagus and with good foods combination and reinforcing my intestines it went away, but if I drink to much it wants to come back a little. I always awake at about 4 am feeling hot in my neck and head with some head ache, drinking milk and some other dairy and even some meats it give me allergies that last about one day with sniffing and much watery mucus, depending hows my inm sys. that moment.
I'm trying DigestaCure have like 2 weeks and really I'm felling better with more energy less allergies, etc I thing I can recommend it now, but, I have to take it in the correct way for at least 4 months, but its easy to drink it, I just need almost not to drink much alcohol or nothing to go steady forward. I wouldn't do in my self any operation, If I don't address the root cause (toxic or diseased intestines) how much good is going to be surgery? if not worse. Daniel.
Hi All. I have been back and forth to the hospital for over 2 years. I have a sliding hernia, I have constant pain under my right rib, shoulder blades, all round my side. I get bad burning in my chest with almost anything I eat, my stomach bloats like I'm constantly pregnant. No ppi's work at all. My surgeon doesn't want to operate, and for what I have read it does seem a very long recovery and not overly successful!. What really annoys me is they are telling me it's not the hernia causing the pain!!!!?????. Yet all the research I have done, everyone I speak to has pain!!!!. Mine NEVER goes away and at the moment is making my life a misery!!. In help with your question Ben, there is a site on Facebook called Nissen fundoplication (not sure of spelling), which has been a massive help, all these people voice there operation experience and after affects, very kind too, I'm sure this will answer a lot of your questions :-)
Hello! just wanted to tell you a bit of my situation to see if anyone has any answers for me, well for the past month a have been experiencing a feeling of something stuck in my throat, then I went for the scope procedure and found out I have a HIATUS HERNIA, then recently for the past 4 days I have been experiencing a really BAD BURNING SENSATION IN MY MOUTH... I DONT GET ANY HEARTBURN BUT I GET A FEELING OF PRESSURE IN MY CHEST... THEN I FEEL WEAK AND DIZZY! IM JUST SO SCARED OF WHAT IT COULD BE, AND THIS BURNING SENSATION IN MY MOUTH IS DRIVING ME CRAZY! I DONT KNOW WHAT TO DO TO MAKE IT GO AWAY. I AM TAKING 20MG OF OMERPRAZOLE ONCE A DAY...
CAN ANYONE HELP ME OUT AND HAS ANYONE EVER FELT THIS WAY?????/
I to have a hiatus hernia, but although I get bad acid reflux, I haven't experienced what you are, and would be frightened if I did! what I would like to know from hiatal sufferers is what pure fruit juce can I drink? I know I can't have anything citric but am fedup with drinking just pure water. please help
Hello
Take 40mg . I find Inexium 40 mg is needed when I get a sore throat rather than 20. Try upping your dose and see an an ear nose and throat doctor if you don't like your gastro enterologist.
Hi Eddie, you said your specialist has advised against surgery? For what reason have they given? If you want the surgery, and by the sounds of it, you are a candidate for it, then request that you be put forward for the surgery?
Ben,
how did you get on with the specialist? I recently had surgery and my symptoms were not even close to yours. It sounds like you have one option if you want to live a better life?
Bottom line....the operation is successful about half of the time but I've never heard of anyone worse off after the operation. If other maladies such as sinus infections and allergies have been ruled out via formal testing, I'd say 'go for it'.
I switched off of soft drinks to canned and bottled iced tea.....works for me.
Hi to all
I have a rolling Hyatis hernia 17 years now and it is just awful, after years of hospital appointments I decided ro have the operation as soon as I woke it was the first time with no reflux. overnight in hospital which i think is bad because you can not move beacause of the swelling and bruising, which lasted for over 3 months. I felt fine for six weeks when i was not eating any solids, a nurse phoned me at home after that and said that I could start eating a little solid food, and thats when it started all over again. Now I can not eat a lots of foods, potatoes,rice, pasta, the list goes on, my food does not go down well and if something gets stuck I am in the most excrusiating pain ever. and because you can not vomit after this operation, you just have to go through the pain. I find it very difficult to drink with food its one or the other otherwise the drink spurts back out of your mouth. so I don not socalise anymore it is just to much bother to explain to others when you look ok from the outside. they think your being picky. can't go to a resterant anymore either. I been offered the operation again, and have refused, there is no guantee that it will work this time, so I am not very happy. I have just got the flu and have been coughing a lot and I think that this has made it even worse. This all sounds a bit morbid but what do you do.
Hello,
I read your history and I got to say I feel really bad for you, I never though this could go this far. I am 17 years old too, for me it all started in September 2014 a few days before my birthday already had 4 Ulcers, 3 in the stomach and 1 in the oesophagus which took around 3 months to heal. The pain is really bad, I have really strong attacks twice every three weeks but the pain seems to be getting stronger each time, it came back during the weekend, nausea all day, my heart was melting, severe reflux, I guess you know the symptoms too..
I was always trying to stay bright about it, when people asked me at school I always talk about it like if it was not really important because I didn't wanted to be treated differently. I didn't think it was going to do much change, just another one of these bad periods but after a month I instantly started noticing changes in the behaviour of others at school, even some teachers have a negative point of view on it. They think I'm doing this to skip exams and that I take advantage of it, now words are spreading and I'm hearing stuff I apparently didn't know about myself from others, I became much less sociable and in some way stopped going out as I couldn't keep up with the group anymore, my health was slowing me down too much and I felt that i was starting to bother them.. After months of travelling back and foward to the hospital, it turned out that my case worsened over time and it wasn't just going to "fade away with time for someone young like you" like they always told me. This afternoon I learnt from my doctor that i was about to go through a lot more change and I'll have to live with it for the rest of my life. I wasn't really expecting to hear these words at only 17 but as the doctor said I apparently have symptoms that only a 45 years old with a severe case of rolling hyatis hernia would have and must be extremely careful with what I eat. He introduced me to fundoplication, it was the first time that I heard about it, from what he told me I understood that it is still an experimental operation and that it may or may not ease the symptoms but they could potentially come back after time. He recommended for me to keep following my treatment (controloc 40mg) for a few years and maybe reconsider the question in the future. After some quick research on the operation I'm now aware of the risks and benefits of it but I still can't get along with it, I had countless bad experiences from hospitals and I'm really starting to dislike these places now, when I was in for my Ulcers i wasn't healing at all until they sent me back home, I just really don't get along with hospitals. Of course this whole period had to happen during my final and most important year of school, and at this rythm I'm starting to feel like at one point I'll have to chose either education or health.
I was curious and wanted to know how else did it affect your life as I'm about to go down the same path as you, I'm not confident in myself as for right now and I hoped that maybe it'd be better to be prepared to avoid any unwanted surprises rather than taking it all in when I'm not ready..
Thank you, Theo.
Hi I have read your letter, I did mention that I had my symtems for 17 years before the operation,But I ham acctually 62 Years of age, I do not know if you are overwieght but I know that this does not help. Things that I have had toi give up are chocolate, Ice cream, double cream, alcahol of all types. Also just before you have this operation your told that you can never ever drink fizzy drinks again? but does not leave much oother that water, althoough I love water it gets a bit boring. so if I do fancy a coke which is rare I wet the glass with water first and put lemon juice and plenty of ice to get rid of the fizz. i also eat plain yogurt on going to bed to try and line my stomack. I did meet a woman in London when having a tablet put into my stomack to read the acid levels. She had had the operation twice unsuccesfully and also she then told that her stomack the split open and had to have this repaired as well. so its all a bit scary. I just get so fed up having a horrible taste in my mouth constantly and coughing all day long. hope this helps
i have had a hiatus hernia for twenty + years much worse over last 5 years had bowell cancser major op 3 years ago type 3to4 then got chemo which which gave me 2 big heart attacks,all this lot was put to one side i was told that the prob was mainly due to hiatus hernia,it was masking the other probs ,now after 20years have been told i do not have a hernia and i am going to see another doc, i live in hope ps 5 other docs say that i do have a sliding hernia and need op so meanwhile i am in constant pain with alot of symtoms related to a hernia, i want to be free of pain and to eat without pain to have a good nights sleep,dont let them get you down, im here ,but keep an eye on the docs and what they say.
Hi lesley, I was diagnosed with only a small hiatus hernia back in June after having a lot of chest pain and that awful burning feeling, I take 30mg lansoprazol once a day and gaviscon when needed. I can relate to the pain between the shoulder blades and also in my ribs on the right side infact I can get pain almost anywhere in my back. I love to cycle and the pain does really impact on this but I refuse to give it up. My doctor told me to drink plenty of cold milk and it does seem to help but again what works for one doesn't for another. Sandra
I haven't had surgury and have only been going through this for about 6 months. I just wanted to say I wish you the best and hopefully this new doctor can provide some help and answers. God bless!
HI i am new on this particular site but not to Patient UK - I had gastritis five years ago and managed to sort it. PPIs did not help and I went the natural route which did see it off. Over the last couple of years I have had acid taste now and then and heartburn if I have had too much wine and a Gaviscon sees it off. However, this time it has come back with different symptoms, still the tight feeling on the left side but pain and burning up the gullet and into the throat and back. It makes me scared to eat and stays for hours - hence me looking into Acid Reflux. I love to run but am afraid to at the mo. I am surprised to read that the doc said drink milk - I thought that was a no no - but on saying that my Mum had an ulcer for 40 years and always took a glass of milk to bed. She lived with it quite ok until 84 and did not pass from ulcer problems. All very confusing, but this is awful. It is so painful all the time, definitely worse than my gastritis.
Hi gwenn, Yes I did start drinking cold milk after the doc said it was good for hiatus hernia only because he himself had suffered with a hernia. It seemed fine at first but then things seemed to get worse so have now cut drinking the milk out, I still have it with my cereal which seems to be ok and this last week have not been too bad, although I still have a lot of pain between my shoulder blades and sometimes further down in my back. Anyway of to see the doc again tomorrow and a different one this time as it is always best to get another opinion.
Thanks for coming back to me - let me know how you get on.
I go on Monday - but dont trust em.