Hi all!!!!

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Hi, (Hi Debs!!) My name is Caroline, and l have had the Nissen Fundop, in January. This will be a long post, as l may as well tell my full story. Lol, sat comfy? I have always, for as long as l can remember, suffered from heartbnurn, from being a child. When l was 15, l was given an endoscopy, and diagnosed with a duodenal ulcer. This was cured using zantac, and for a couple of years was a lot better, though still not right.

After my first child was born, my symptoms were back with a vengeance, so l was given another endoscopy, which showed up a hiatus hernia. I was given a course of zantac, and told that was all they could do. I kept getting increasingly worse reflux, and would wake up through the night, acid pouring down my nose, and out of my mouth, choking, and unable to breathe, because l knew that it would be very dangerous if l inhaled it. Anyway, l was back and fore to the doctor, who suggested l should lose some weight. l was comfortable with my weight, 9and a half stone, and 5'3. Not slim, but certainly not fat. I was given this advice, and no treatment for the nextcouple of years, and then l just quit going, and suffered in silence. Then, 12 years later, l went out for lunch with my Mum one day, and just could not swallow. I saw a post from someone who said the same thing, the food physically would not go down. I made a doctors appointment, for the next day, and told her, l couldn't even swallow water, she sent me away with 20mg of omeprozole. I couldn't swallow them. That was the Friday. Over the weekend, l was ill, couldn't eat, or drink, Monday was a local holiday, so l didn't have to work, l went in on Tiuesday, but really shouldn't have, l went home, and collapsed in tears. I was meant to go back to the docs in 2 weeks, which was still about ten days away at this point. My partener and Mum tried that night to get me to go to the hospital, but l refused. I knew l was getting severely dehydrated, but couldn't seem to acknowledge that l needed treatment. Anyway, on the Wednesday, Mark literallt carried me out to the car, and took me to hospital.

I was put into a cubicle, and doctors were in and out, the pain by this time was so severe, l thought l had a tumour or something. I was given all kind sof scans, and as my breathing was really bad, l was given an ECG, the tested my pancreas, scanned my gallbladder, liver, etc, but all showed up nothing, so they gave me morphine, and it wasn't until that point that l realised just how much pain l had been in, in started to work at the centre of the pain, but as it moved out, the pain became evident, around it. I was admitted to the ward, and put on a drip, which they kept me on for a week, l was given IV Lansoprazole, nifedipine, which you crack with your teeth, IV buscopan, and buccastem, which dissolves on your gum.

As soon as l was able to swallow water, l was taken for an endoscopy. The surgeon was absolutely speechless, he said it was one of the worst cases of oesophagitis he'd ever seen, and that was after a week of treatment, and nil by mouth. I'd had reflux for so long, that my gullet was raw. Anyway, after another few days l was allowed home, and referred to another hospital, to see a surgeon that does the procedure. He did the PH and manometry tests, although he was certain l would need to have the procedure, it was red tape that dictated it had to be done. The tests showed up high levels of acid, and the same problem that Debs has, with the faulty valve. Prof K said he would do the op within the next 6 months. From the first time l was admitted, to my surgery was just less than a year, l was admitted to hospital two more times for drips, when my gullet inflamed again, but there was no fighting for it, l went to the doc, and she arranged me a bed straight away.

On my first discharge from the hospital, my doctor sat on my bed, and told me in no uncertain terms that l was to consider myself seriously ill, \"Young Lady, you are recovering from a serious illness, and your family should treat you as such\" (lol, or words to that effect!!) I was given buccastem, and 30mg Lansoprazole when l left hospital, went back to see the doctor two weeks later because it wasn't working, so the dose was doubled, and l was given Domperidone. The next few months were a struggle, l was weak, and tearful, tired, l felt 80, not 30!!

The surgery was the best thing l have ever had. The change to my life is endless. Not to have that acid constantly burning my throat, and food travelling back up inmto mt throat is such a novelty to me. I have been left with side effects, though. I can now 'burp'. I couldn't for the first 3 months, but now, it's not a problem, but they don't half smell!! Lol, sorry to be graphic, but it's a problem!! I cannot, however vomit, l had a stomach upset recently, but although my stomach was retching, l couldn't vomit, and that was very very painful, so l have been given anti semetics to keep in the house in case of this happening again. I saw the surgeon in March, who was concerned because l still cannot swallow meat, like chicken, chops, steak, things like that, which is no hardship for me, but he wants to see me again in July, and if it's no better, he wants to take me back in and stretch my gullet. I don't want it, as l'm afraid he stretches too much,a nd undoes his good work!!! The other problem l have been left with, that is getting increasingly worse, is diarrhoea.. I was warned that this can be a problem for a small number of patients, and it seems l may be one. It is sudden, explosive, and almost uncontrollable. It's getting more and more frequent, and l'm currently in the process of keeping a food diary to see if there's anything that may set it off. At the moment, l suspect ice cream may be the culprit. I hope it is just an intolerance to a certain food, because it would be very hard to live with otherwise!!!

Anyway, thank you for reading my very lengthy post, and l hope that it help some of you in your decision, about surgery, it is not without it's problems, but for me, when l look at them, in eprspective, l wouldn't change a thing. I had little choice in the matter, due to the high dosage of drugs l needed to keep it under control, and the damage that had been done already. I feel better in myself, the constant backachehas gone, the constant dragging feeling, as though there was a weight attached to my gullet, l need less sleep, have more energy, can drink wine, eat cvheese, and curry!!!! lol, that alone makes it worth it!!! Take care all, and feel free to ask me any questions. Take care all...xxxx

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7 Replies

  • Posted

    Thank you love,that post has given me hope for when i go to see my consultant on Wed :D :D

    Hope you are feeling well,keep healthy

    Debs xxxx

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  • Posted

    Hi Caroline

    Reading your experience has really given me hope, i am also in my early 30s when i was first unable to swallow my food i weighed just over nine stone and i am 5ft tall,that was in Jan now i weigh 8 stone,i am on domperidone and 40mg nexium but my periods have stopped and i am producing milk which my doctor says is a side effect from the domperidone,this gets me down as i feel like a freak. I feel like i am allways sick it is taking over my life although i still work full time my holliday was ruined as could not eat any food and my social life suffers as i get so tired and have to be near a toilet all the time as have to bring up burning acid in my mouth. I dont want to stop taking the domperidone though as i can not handle the feeling when my food tries to come back up. I have my first hospital appointment on June 19th but after reading other peoples experiences i understand that this is the begining of a long process but reading your story has given me hope so thank-you

    Luan

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  • Posted

    Hi luan,The best advice I can give you hun is be persistant and dont be fobbed off with any old excuse.

    Hope you stay well and my very best wishes

    Debs xxxx

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  • Posted

    Hi Caroline

    It sounds like you have have a real bad time but great to hear you dont regret the op. I have been put on the waiting list to have the op after suffering for at least 7 years. Fortunately I havnt suffered as bad as you but my life has certainly been disrupted, fed up with the chest discomfort, tiredness and worrying about everything I eat. Im very worried about having the op especially if I end up with side affects you describe like not been able to swallow meat. Is this because you had severe damage to your oesophagus. But like you would be great to be able to eat and drink what I like and be off the tablets. Currently take 30mg of Lansoprazole but even with this dose have chest discomfort. My specialist isnt convinced its acid reflux, PH test was negative, but bioposy showed acid. I have just completed a one weeks course of 160mg of one of the other PPI's to try and convince myself and my doctor the operation will be a success. I must admist the chest discomfort was greatly improved but I did have stomach aches. I put this down to the tabs and IBS. Im so unsure I have now stopped taking any tabs to try and see how bad things get without them and if I feel better off them. I need to convince myself its acid before I go through with it. Doctor said it could be to do with slow transit time of food? When you said the acid was coming down your nose how did you determine it was acid? Keep up dating us on your progress and any information you can give me about the op would be gud, how you managed with the liquid diet etc. Also I work part time and dreading telling my boss Im going to have op, how long after op would you say you would be well enought to return to work? Hope you feel better soon San

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  • Posted

    Hi, I'll take the points and questions you raised, and answer best l can!!

    OK, the discomfort l'm getting from eating meat is a result of the surgery being done too tight, l see the surgeon again in July, to see about the possibility of having it stretched, which involves inserting a ballon device, and inflating it to widen the gullet. Personally, l feel it's a small price to pay, but he's keen on sorting it out, so l'll have to play that by ear.

    (I'm answering two posts here, so excuse me if l cross over from one to the otehr!!)

    Luan, please don't stop taking the domperidone. l know the side effects can be nasty, and l was lucky that l wasn't affected by them at all, but that feeling of your food moving up instead of down has to be reason itself to carry on. I hope your appointment goes in your favour, and you are not given the runaround like Debs is.

    San, you ask how l knew it was acid? l can't really give you a definite answer to that one, but the burning in my throat was the start, and then it got worse and worse, there is only acid that could hurt like that, this was confirmed by the ph test.

    As for returning to work after the op, l went back after 3 weeks, but on my second day back, l fell asleep on the sofa at lunchtime, so my husband left mr to sleep, and phoned my boss. I was exhausted. l only work part time at a Post office, so it's not a heavy job. It wasn't the physicalk exertion that knackered me, it was just the result of the anaesthetic, l think. It would depend on the job you do, but personally, l couldn't have entertained full time for about 5 or 6 weeks.

    One thing l will say to everyone, is beware of the inability to vomit that some are left with. Last week, l felt sick on the Thursday night, but wasn't sick, then on Friday, l got up with terrible diarrhoea, which is something l do get a lot, so didn't think much of it, but then l started retching, and needed to be sick, but couldn't. I suffered it all day, and by the time my husband got home from work, l was in agony, because it wasn't happening, so he phoned NHS24, and a doctor came out and gave me an anti-semetic injection, and some pills, so that was ok, but l went to see my GP, and she has given me tablets to keep int he house in case it happens again.

    Here l go again, waffling on!!

    Hope this helps someone at least!! Take care all, caroline..xx

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  • Posted

    Hi Caroline

    Thanks for your advice,i have carried on with domperidone as when i tried stopping my food started sticking again but am trying to just take once a day. I had my first hospital appointment today and am really pleased the doctor was great she is sending me for the test where i have a tube up my nose and down throat for 24hrs and she highly recomends the surgery for me,im so releived she didnt try to fob me off especially as i was up at 4.20am choking on the acid that comes up, just hoping that it will be about when i have the test so i can get on the waiting list although if its too long will still consider going private as now i would just love to be normal again.How are you doing now? Thanks again

    Luan

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  • Posted

    and a doctor came out and gave me an anti-semetic injection,

    I think this should be anti-emetic - anti semitic is anti jewish and I'm sure you didn't mean that

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