Calling all uk members of this forum

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reet22
Regular Member


Date Joined Jan 2013
Total Posts : 146
   Posted 3/6/2013 12:39 PM (GMT -6)   
Hi everyone. I joined this great forum a few months ago when I could find nothing on uk sites. Its sometimes hard to understand the different names of medicines and of course we have the Nhs (for better or worse) instead of seeming to worry about price of treatment. My story is I had fundoplication 12years ago. I must have been one of the first lapiscospically and it lasted 9years. I have since got symptoms back, and the original surgeon doesn't want to re-op. I have had 3 endoscopies, 2 acid ph 24hour tube, 1scan and 1 barium x-ray. All were clear except scan showed gall stones and barium showed reflux 'big time' as radiologist told me. I now have appointment with 3rd Consultant in May. I take no anti-reflux medication only motilium & sucrafate because none help, I just wait about 24hours and symptoms pass and I feel great. My big worry is my father died of cancer of oesophagus cancer at age 47, but all my tests thank goodness come clear but this burning that I get at cannot be good. Has anyone any idea what I can do next? Rita

Andy1986
Veteran Member


Date Joined Dec 2012
Total Posts : 1171
   Posted 3/6/2013 3:42 PM (GMT -6)   
The nhs can be a pain in the arse, im going through it myself. I would keep harassing them to do something. You have a barium test which shows reflux, i would kick up a fuss until they send you to a surgeon for a redo. If youre worried about cancer then a redo would help.

Did the first surgeon give any reason for not redoing it? These things dont last forever and from what i hear 9 years aint too bad.

reet22
Regular Member


Date Joined Jan 2013
Total Posts : 146
   Posted 3/6/2013 3:58 PM (GMT -6)   
Hi Andy the surgeon sent me for endoscopy & acid ph 24hr and they came back with no trace of reflux, so he just sort of dismissed it and I paid private to see him! So cos he says no the other Consultants don't seem to go against him. They all stick together! It was only in November I was sent for barium test and that Consultant just wrote to me saying an op would probably make my symptoms worse don't know how !! Maddening is'ent it. Thanks for replying I know of no-one who has this,good job I've got an understanding husband.

Andy1986
Veteran Member


Date Joined Dec 2012
Total Posts : 1171
   Posted 3/6/2013 5:31 PM (GMT -6)   
I just had a negative ph test too, very demoralising, luckily my gi still referred me to a surgeon as i have a large hiatus hernia. Also booked for the barium swallow so hopefully that will show the reflux!

reet22
Regular Member


Date Joined Jan 2013
Total Posts : 146
   Posted 3/7/2013 2:53 AM (GMT -6)   
I've noticed through reading this forum that lots of people have negative results with ph test. As soon as wire went down I felt so much better could eat what I wanted and it lasted 10days!! Good luck with barium test I had mine at the now infamous Stafford hospital although they were very patient and supportive. Its just getting across to the Consultants how poorly and life destroying this complaint is!

Baza
Veteran Member


Date Joined Jan 2011
Total Posts : 513
   Posted 3/7/2013 5:20 AM (GMT -6)   
HiReet22, have you heard of Nugits? its a team of gastro surgeons in Newcastle who specialize in gastro problems and acid reflux surgery.I had a nissen done last year that has failed or not been done properly and they are going to look into whats wrong for me.They are very keen to help,surgeon i met said he would redo my op if he has too.Its through the NHS aswell ! Ive got nowhere with my original surgeon. Barry

reet22
Regular Member


Date Joined Jan 2013
Total Posts : 146
   Posted 3/7/2013 6:52 AM (GMT -6)   
Hi Barry. Thanks so much for your info its much appreciated. I will look into Nugits when I get back, it sounds very promising and another channel to proceed along. Good luck to you sorry you are having trouble so soon. Rita

Baza
Veteran Member


Date Joined Jan 2011
Total Posts : 513
   Posted 3/7/2013 7:04 AM (GMT -6)   
Hi Rita,i forgot to mention that one of the team of surgeons is a Proff.Attwood who is currently involved in the new endostim device,i think hes carrying out trials this year.I read an article in the Daily Mail about the device,you could look that up on the internet.Good Luck! Barry

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 3/7/2013 3:10 PM (GMT -6)   
Hi there, I'm also in the UK and have worked for the NHS......

If you feel you need a second opinion then you are entitled to one and can choose which hospital you go to via the Choose and Book system. I know the system isn't great and it takes a fair amount of phone calls and nudging, but you can get yourself seen at a different hospital. If you can find someone who has experience of "re-dos" then you can also insist on a named-consultant referral from your GP.

If the radiologist has confirmed reflux then you should be able to discuss this with a surgeon. Also, if the radiologist has proven you now have reflux and you are not on a PPI, does your GP think you should be on a PPI to protect your oesophagus?

I know your family history is worrying you, so if they don't want to offer surgery should they not be offering medication? Was your father a smoker or heavy drinker? The risk of cancer should still be very low for you, but I think everyone in your shoes would want to be proactive about reducing the risk.

Those are my thoughts....... hope it's of some help,

MMM
GERD (over 2 years)
Lifelong stuff: Food allergies/intolerance, eczema, asthma

eLaReF
Regular Member


Date Joined Aug 2012
Total Posts : 74
   Posted 3/8/2013 3:29 AM (GMT -6)   
Hi Rita

You have to push your GP. From 1st April they have more responsibility for getting you the right care.

If you are not getting what you want from them, switch to another GP practice - don.'t just stick with them because your family has always been there.

Ask them what they would do if they had the ongoing problems you do?

I'm interested to know what your consultants prognosis was, as if he thinks your wrap is OK, what else did he suggest it could be?

It could be that they are playing safe if your symptoms are non specific and are waiting to see if a pattern emerges to make it clearer what's wrong with you.

Baza's idea of Newcastle sounds interesting too, so could be worth some investigation?

Hope this helps.

Les.

reet22
Regular Member


Date Joined Jan 2013
Total Posts : 146
   Posted 3/8/2013 5:39 AM (GMT -6)   
Hi Les thanks for reply you talk good sense. When I saw the Consultant who operated(it is over 3years since the consultation) he just shrugged his shoulders and said no reflux could be found. At the time I just thought that it would get better on its own not realising 3years on I would be no different. My new appointment in May(unless I get a cancellation) will be the 3rd different Consultant so keeping fingers crossed.
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