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Worsening Reflux Oesophagitis from Hiatus Hernia - Shall I Take the Op?

Posted , 21 users are following.

benhiatus
benhiatus

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

1 like, 21 replies

21 Replies

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  • elaine99946
    elaine99946 benhiatus

    Posted

    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.

    • THCouncil
      THCouncil elaine99946

      Posted

      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.

    • elaine99946
      elaine99946 THCouncil

      Posted

      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
  • john96381
    john96381 benhiatus

    Posted

    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.
  • paul7580
    paul7580 benhiatus

    Posted

    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!
  • marie19160
    marie19160 benhiatus

    Posted

    I too had all these symtoms. I would wake up choking every night and felt like I had battery acid in my throat. It would burn so bad I couldn't get my breath. I have had the surgery twice, in 2014 and again this year because it came undone. I feel about 90 percent better. I know longer have the heartburn, but there are a few things I can't eat anymore. Mainly peanut butter and pumpkin pie. Anything too picy also. It does not cause heartburn but it hurts in my chest until it wears off. I am still glad I had the surgery. I feel so much better. I hope you can eventually get better too.
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