Hiatus Hernia Repair - Yay or Nay?

Digestive health
1

Hi guys! Just looking a little advice regarding Hiatus Hernias, a weak sphincter valve and fundoplication surgery versus other methods of treatment. 

First a little about myself. I am 22 years old, living in UK (Northern Ireland) and have just been diagnosed with a small hiatus hernia and an un-functioning sphincter valve. 

I have been suffering with pains for almost 4 years now, since age 18. GERD.. Reflux, stomach pains, chest pains, sore throat, coughing, the weirdest belching sound which is almost constant and sounds like a dragon around my breast bone (I physically can not burp) vomiting, periods of constipation/diarrhea, back pain.. The list really is endless, and these symptoms are mostly intermittent but sometimes very severe and debilitating. 

It massively affected my life, especially throughout university and I don't know how much more I can take. I have had to pass up on massive career opportunities and miss a lot of work because of my health. I was hoping to travel to Australia in the early half of 2015 but I don't think it is realistic with my current health problems.

In the last 4 years the NHS have literally part diagnosed/suggested I have all number of diseases, or sometimes told me there is nothing wrong at all.. I have been treated/diagnosed/referred for bronchitis, Celiac disease, MA, arthritis, and a whole host of other random things.. But have never heard the word hernia mentioned.. To be honest up until a month ago I though a hernia was something boys got on their bits!

I have tried every type of antacid available. Tablet form, steroids, some rotten pink liquid, gluten/lactose free diet, laxatives, pain relief.. To be honest nothing has ever really worked notably and as I am quite bad at taking tablets I would occasionally forget to take them and not feel any better/worse off for it.

I have been to see endless GPs, had a 6 night stay in hospital, been to out of hours, A+E and never really got any answers apart from a prescription for yet more drugs and on the odd occasion a referral.

Finally made the decision to go private about a month ago after an NHS gastro doc suggested an Endoscopy. I couldn't wait months for answers so after finding out my Dad's company have private health insurance with H3 for our whole family I booked into Kingsbridge private hospital in Belfast. In the last month I have had my private consultation, a barium meal which revealed a small hiatus hernia and a weakening in the stomach valve (apparently mine does not close at all!) this was re-confirmed with an endescopy and I had a colonoscopy to confirm there was no bowel problems. 

I had my evaluation appointment today with the private consultant who has recommended a dietician, some form of antacid, a laxative to relieve pressure around my bowels to hopefully relieve some abdominal pain and a review appointment in 3 months.. I broke into tears when he said this.. Although I have had a definite diagnosis which I am massively relieved about, it is exactly the same thing I have had tons of NHS docs tell me.. Meds meds and more meds! He polished it up with a dietician and said the only other option is surgery but he wouldn't advice because I am too young and there are a lot of complications. 

I came on tonight to research the surgery and although the side effects some of you guys are facing seem awful I doubt it is worse than how I feel now. Honestly I feel like I have nothing to loose! 

I have booked a review appointment for 3 months with the same consultant but now I am seriously considering ringing tomorrow to book another appointment and beg for this surgery.. I feel like I am 22 and my young adult life hasn't even started yet.

In an ideal world I would get the surgery in around January, have a few months recovery and be on a plane to Australia sipping strawberry daiquiris by April. I understand recovery can take much longer than this but I am at a wits end.

I just wanted to appeal to any one else in a similar situation to see their thoughts.. Do you recommend surgery, have you had it done, How did the procedure/recovery go? Or can you recommend any other forms of treatment? 

I am particularly interested in finding someone who has the complication with the valve also as I have only been able to find one comment relating which said it involves another part to the procedure to replace/repair the valve while they are fixing the hernia? 

Thanks

Robyn 

2

Hi Robyn, 

Sounds like what you have is exactly what I have! My hiatus hernia was diagnosed last year, also GERD and it has been mentioned I have a weakened sphincter and was told this is due to the acid. I have thankfully been told I will have it operated on I was half expecting to be told I need to continue on the meds for the rest of my life. I was unsure at first whether an operation would be the best option but after speaking to my surgeon and reading this forum I'm now actually looking forward to being medication free! I see you mention about your irregular/regular bowels, I too had colonoscopy that was normal but mentioned to my consultant my bowel habits only changed when this started happening but the only answer I got was maybe it's normal for me! Which I know it isn't but didn't I push it. 

Im 37, iv had these symptoms on and off for maybe 8 years but more consistently for the last 4. I put up with it and was just on lansoprazole for a few years until the tablets were no longer working. They then started with the investigative procedures, after everything, scans, colonoscopy etc I was finally given an endoscopy and diagnosed last year with my hiatus hernia and GERD! 

I am currently on 60mg lansoprZole, ranitadine300mg twice daily, domperidone to help with the nausea (this is the worst symptom for me) also topped up with rennies and gaviscon. Still these don't control my symptoms so the operation is my only choice now! 

Sorry this is long reply but I would say being so young I would go for it! U have nothing to lose! My surgeon said there is a success rate of 90% of patients after ten years following op are still symptom free. There are risks of course but while your young and healthy I say go for it! 

Good luck 

Nez 

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Hi Robyn,  What a miserable position you've been in for the past few years but I am glad that you've finaly got a difinitive diagnosis.  Surgery is not something that you should take on lightly but I can see that this isn't the case with you.  Such sever and widespread symptoms are a common theme amongst those of us who have gone the surgery route.  I had my hiatus hernia repair earlier this year after about 10 years of symptoms that increased alarmingly in the year running up to my op.  My valve didn't close which meant that almost everytime I ate, what went down also came up again quite quickly.  This was repaired during surgery and I also had a laparoscopic fundoplication (wrapping the stomach around the esophagus so that it reduces the risk of it re-occurring).  It's so far worked for me and apart from occassional indigestion (like every one else) and stomach growling (which may not go as I think it's something to do with the wrap not that it takes a little longer for my food to digest) have had none of the horrid, life limiting issued that I had before.  Good luck with yours and hope that you can get it done soon.

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Hi Robyn I am really sorry to read that you have suffered so long at such a young age as well.

The common thread in all the postings on this subject seems to me to be the fact that most of the GPs when addressed with all the symptoms that you, I and many many more describe to them their immediate reaction is to diagnose some form of anxiety or stress and to treat you for that.If I was you I would after consultation with your parents return to your GP and question why he seems so opposed to you having a form of surgery to solve the problem.If he gives you a response that you do not agree with then I would ask for a second opinion from another doctor.

Whatever it takes you really need a solution to the problem now rather than later as you want to get on with your life and do all those things you dream of doing.

Keep in touch and let us all know how you get on.

Personally today I went for an endoscopy and rather than as I hope I would be told that I have either an ulcer or a HH I was informed that i had inflammation but he did not specify where.He did a biopsy at the same time so I will now have to await the results of that. He also took some photos so whilst I was hoping my fears would be allayed to do now they have increased.

But being 63 its still not as bad as having the same issues you have but at a far younger age. Best wishes Ted

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Hi Robyn,

You have to be very assertive if you want surgery. I am just waiting for the results from my 24 hour ph test and manometry test. Have you had these tests done? as you will have to have them done to go down the surgery route. I have seen a surgeon already who says he will do the operation if the results are what he expects - and for my personal cicumstances - I will have a 270 degree fundoplication instead of the 360 nissen. There is the linx operation - but that is only available in a few UK hospitals and they will not do this if your hernia is bigger than 3cm - (mine is 3cm - so I'd have been a borderline case for this). I was advised to stick with the NHS - and I have. They do actually state on their website that if you want to be long term medication free you can ask for an operation. I'd go to your doc and ask to see a upper GI surgeon.

Good luck!

 

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Hi Nez!

Thanks for the reply! You are right our situations do sound very similar. For some reason private doctors can't access my NHS records so I have sent the private consultant a list of meds I have been on over the last 4 years so he can rule out drug therapies I have already tried.

He actually said there were 3 options - but he completely glossed over the other 2 options and really only left me with the option of a diatician and other antacids! If I had of done my research before hand I would have queeried the surgery further but he just told me it can have serious side effects such as not being able to swallow for months so I just sat and listened. 

It has been left that he is sending a letter to my GP for a recommendation of different antacids now they are treating a hernia and not just acid reflux, and then come back in 3 months and if my symptoms haven't improved he said I will need surgery.

The third option he mentioned was another type of drug therapy but I can not recal the name, but he said the side effects of it are crazy and it is only really advised to patients whose condition is already seriously life-limiting

Thanks again for your reply, I hope you get your surgery soon! 

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Thanks for the words of comfort SallyAnn! So glad you have got the surgery and are feeing much better! Have you had to change your diet since having the surgery? I haven't seen much discussion about people's diet changes long term after they move back on to solids or if they have been able to consume alcohol socially.

I suffer from similar symptoms with the valve - I am constantly vomiting! That is one possible side effect of the surgery that worries me, not being able to throw up if you are feeling unwell although hopefully there won't be a need!

Thanks again

Robyn

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Hi Ted! Thanks for the response.

Luckily enough I am being treated privatly so they are happy enough to go ahead with the surgery, more money for them after all! It is just myself trying to decide the best course of action. This has all happened pretty fast after years of no answers! 

You are definitely right about the stress/anxiety issue, I get quizzed about that every time I see any doctor and describe my symptoms! I have had a few panic attacks when I have been in confined and busy places and I experience the sore chest/bad reflux, but it isn't a big issue. 

I did not tolerate the endescopy procedure at all, I was under sedation but obviously my gag reflex is useless and I was violently vomiting throughout.. I think it lasted about 60 secs, just long enough to confirm what the barium meal had told them. They couldn't take biopsies and I was also told I have inflammation but they didn't specify, I assume they mean around the hernia or in the ausophagus?

I suppose although the symptoms are awful we can count ourselves lucky that it isn't considered life threatening! I hope you feel better soon and get the answers you need.

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Hi Glennie!

As I said above I think because I am private they will be happy enough to do the surgery, I just need to decide if I want it. If this certain type of drug therapy the private consultant wants to try me on doesn't work after 3 months he told me I would need surgery then, so I have been thinking I may just save the waiting after 4 years of all sorts of drug therapy and proceed with the surgery!

No I have not had either of these tests done or recommended! Is it to test your suitability for the op or just a measure they need to have before they can opperate? 

What is the difference in circumstances between the 270' and 360'? I didn't get a measurement for the hernia, it was just classed as 'small'. I am very keen to even reduce the amount of drugs I have to take because I can only imagine it will get worse as I get older and I really would prefer not to live my life that way!

Good luck with the results of your tests and I hope you get the answers and relief you are looking for!

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Hi Robyn,

No real change to my diet now but I do still steer away from 'hard' meats such as steak as that can still be a bit of a challenge and if I can't relax and enjoy it freely, then there's no point in me eating it. Alcohol is fine! hic! I haven't been able to vomit since and that was a problem to start with when foods felt like they had stuck and needed to come up or go down...trick is to relax and let them go down as you won't be able to bring them back up.  I haven't felt the need to be sick since as not been unwell to that point, so I don't know if it is possible now - the surgeon did howewever suggest that I would not be able to - not sure how long term that would be though.

Sally

11

I would definitely try the Nhs route Robyn, from what I have been told post surgery is really not that bad. If you are happy to continue on meds then great but as my consultant told me he has had patients who have had their hernias and their symptoms for 30 to 40 years and they have just continued on medication then decide they want a repair. Never did the surgeon say he wouldn't recommend it, although he may be slightly biased. He mentioned to me about the not being able to  swallow afterwards but that only lasts a few weeks, there would be a massive diet change initially but overtime it can get back to normal and from what I have read on here that seems the case. The only drawback he told me was I would not be able to vomit again, which to me was abit odd lol, he said I would try to be but it can't come up so it apparently comes out the other end! 

I have read on here tho that some have been able to vomit following surgery so maybe as with most it just depends on the person. 

I hope you finally get somewhere with your treatment, I would definitely try and take a positive stance regarding surgery! 

Keep us posted

Nez xx

12

Hi Robyn,

A small hernia is upto and including a 3cm hernia - but if it's 5cm it's classed as large. As for manometry test - that checks how well your lower oesophogeal schinchter works - and the 24 hour ph test is to see how much you reflux in 24 hours. You have to reach a certain pressure on the manometry test and have to show an abnormal reading on the ph test for them to go ahead with operation. The difference between 360 degree wrap and 270 - is the 270 isn't as tight - as often the 360 can be too tight - and makes vomiting and belching difficult after the operation - 270 it can happen too - but is less likely. 

Hope this helps! 

Can't comment much on linx - but there are people on here who have had great success with it.

13

Hi Robyn,

On second thoughts I said stick with nhs - well prehaps you are better going down the private route. I was told I would get my ph test results in 4 weeks - now they say 6 weeks. I also found out that the surgeon who said 8 weeks for surgery has a waiting list for at least 12 and until these results appear I am nowhere on the list. I wouldn't mind I if I was told the truth. Funnily enough yo are supposed to be sorted in 18 weeks from the initial consultation on nhs. I have been in their system since April!

14

Hiya,

My consultant has discharged me from there clinic and said keep taking the antacids and can't help me..  I got a sliding hiatus hernia and bile reflux in stomach and been having pain for the last two years  in Upper stomach, what ever I eat hurts.  all the right drugs and strong painkillers but the pain doesn't go away, for the past 2 years I want the hernia repair. How old are you and are are your symptoms? 

15

Hi I am 63 and like you I seem to be suffering my whatever I eat.However having had an endoscopy last week although I have been told that acid is seeping from my lower intestine into my stomach they have not diagnosed that I have a HH. So your comments are very interesting.

By what you say an operation would seem to be the answer to your problems but whether you can insist on having one I am not sure.Good luck.

16

Hi Clareybear,

I am 46, I have had a lot of problems with chronic cough, sore throat, regurgitation, sore chest, to name a few symptoms. Think the regurgitation is the nastiest - wakes you up in the dead of night and makes you feel like you're choking! I have also had my meds upped a few times - can't tolerate PPI's and am now surviving of a very restricted diet and lifestyle and 300mg of ranitidine twice a day. Don't tolerate them very well either - they are terrible for bunging you up! I am still unsure what will happen with me yet - as I am still waiting for results - but if they prove reflux and that my gullet is working ok - then they will hopefully do the op. If I were you Clareybear I would be going back to doctor and asking for a second opinion. You could maybe ask for a impedence ph test that checks for bile as well as acid? There are a few people on here who say a standard ph test doesn't pick up the problems they have. It's not good to be hurting all the time. Hope you can get some more help.

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Yes I had the same problems, surgeon said I would be cured and likely would no longer need meds. But after about 18 months I am worse than before, had to be scoped again found that wrap had come loose and sphincter was always wide open so now anytime I lay down stomach acid comes up into my throat which causes all sorts of issues.. Think long and hard about this surgery, I wish I could go back but once it's done there is no going back. Maybe try some supplements, vitamin d, magnesium, good luck 

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Hi Robyn - suggest you make sure you get yourself sorted before coming to Australia as we are in exactly the same boat as you guys overthere in that really good GI's are darn hard to find. Dont get too disheartened with what you read here as the guys that get cured tend not report back so you cant get skewed opinions.

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Hi all,

That's the first time I am sharing my story on a forum of fellow sufferers but I recognise myself in your testimonials. I am French but I have been living in the UK for about 2 years and half now.

I am 23 and have been diagnosed with a sliding 3 cm Hiatus Hernia last September. All started in August 2013 when one day I had all of sudden stomach cramps which would last for hours during several days... After several visits to the GP and A&E who thought I had at first apendicitis, then a gallbladder infection I was left with some antibiotics and been told to drink lots of fluids because the final diagnosis was a kidney infection (the pain was that strong that it would also go up to my lower back). The "big" pain went away but for a year after that I would still have that constant stomach pain on one spot in particular. I came back to see the GP who thought that time I might be celiac, but all my tests came back clear, he then told me it might be my abdominal muscles and prescribed me ibuprofene gel... I just kept having this pain and tried and coped with it as I had no idea of what it would be, but a year after the massive stomach cramps episode, it started all over again... my GP referred me to the Hospital on same day access, they gave me some Oméprazole and told me that they would book an endoscopy (in August at that time), but after this it just kept getting worse and worse (the Oméprazole didn't help at all), my boyfriend and his family started to panick and brought me several times to A&E as my stomach pain was unbearable (I was about to pass out when it would kick off). I was off sick for 2 weeks at work. The last time I went to A&E they gave Lanzoprazole and some Fybogel to release the pression around my stomach and told me to wait for the endoscopy which I did whilst suffering. I finally had my endoscopy at the end of September and finally had an answer : Hiatus Hernia. I had no idea of what a "hiatus" hernia was at that time and discovered all the downsides... since my endoscopy my condition went from back to worse :

I experience chest pains, shortbreathing, oesophagus pains, stomach pains, heartburns, a tight throat feeling and from time to time  regurgitations as well as food sticking in the back of my throat (due to tightness). My qualifty of life dramatically decreased : I used to be a gymnast and to dance and I am now unable to do so because of the pain and the heartburns when I exercise. 

I moved flat since the first GP consultations and with my new GP we figured out that I can't tolerate PPIs and I am now with Ranitiding 300mg twice a day + Gaviscon Advance. It relieves the symptoms but they are still there and I am still unable to do all the things I used to do : I am constantly tired, in pain and feeling sick. My GP finally decided to refer me to a GI surgeon, who himself referred me for an oesophagial and PH manometry that I had done 2 weeks ago. I am now seeing him again in 2 weeks and I don't know what to think if he suggests a surgery as I could see really good but also really bad testimonials about the outcomes of it....

I am sorry for the big message I just wrote but it's kind of nice to talk with people who understand what it is to live with a hiatus hernia, and I'm also sorry for any mistake in English smile

 

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Hi maloushka

sorry i have not replied earlier but i have only just found your posting. I am sorry to read that you are feeling so poorly but i am glad that you are getting some comfort from reading of others experiences on here.Interestingly enough my GP as just added Ranitiding to my prescription but as yet i cannot say i have noticed any difference in my sleep patterns.I was also interested to read you feel constantly tired because I too feel like that but as yet none of our forum colleagues as mentioned it.Whether you have surgery or not I hope things improve for you speedily.

Also please do not apologise for mistakes in your english as its fine and I certainly could express myself in french so eloquently. Best wishes Ted