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SueC
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Quote SueC Replybullet Topic: on the journey
    Posted: 06 Apr 2017 at 12:23am
Greetings one and all. As I sit here about 12 hours into my 24 hour PH test I figured it was as good a time as any to do my first post. My journey to diagnosis and possible surgery started with a bang - quite literally. I took a bite of toast, struggled to swallow, lost consciousness and came round having smacked my head very hard on a stone floor. I was carted off to A&E and regard myself as very lucky just to have had severe concussion rather than a fractured skull!
I was then referred for an urgent endoscopy, and another, and a third within 3 and a half months as the oesophagus was in such a mess. In the words of the consultant " You must have been in a considerable amount of pain for a long time for this amount of damage to have occurred" Only then did I realise that the chronic pain I had endured at night, for years, and the 'waking up choking' episodes weren't a normal part of being middle aged and a bit overweight. Thanks to the BW website and all of your informative posts on this forum I quickly gathered a lot of information and realised that I am indeed lucky not to have HGD or cancer.
I'm now a year on and am probably heading for a fundoplication if I wish. I have to say that the lansoprazole has worked extremely well so far and the pain relief I experienced once it had kicked in was truly life-changing but of course it won't fix the reflux or the hernia. Having been a bit pushy early on when they seemed happy to do repeat endoscopies but not actually speak to me I have since had intelligent conversations with consultants and registrars and have been happy with the care and service provided by the hard-strapped NHS.
To those of you yet to have the manometry and PH tests - they really aren't anything to fret about. I was amazed how smoothly and gently the tube and wire were inserted and the swallow tests completed.
So, all tests being satisfactory, the next question is whether to proceed to the surgery. Having considered the pros and cons I'm tending towards having the op but I need a few more opinions about just how serious the inability to burp or vomit could be. I'd also like a realistic view of the recovery period. I'm a teacher and whilst my job doesn't involve hard manual work it does involve a lot of lifting and carrying, a lot of bending, twisting and stretching up to reach things or write on boards, lots of walking and climbing stairs and lots of jostling through hoards of teenagers in narrow corridors. So realistically how long do you think I should expect to take time off work so as not to jeopardise the recovery?
Sorry this is so long and thanks again to all of you who have provided so much information and advice on this excellent forum.
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jcombs99
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Quote jcombs99 Replybullet Posted: 06 Apr 2017 at 12:37am
        If u can live with the drugs which is no big deal I'm on 60mg Lan then stay on them . If or when they don't work ( 10 different kinds + DOSE CHANGE +Timing) THEN !! get the Fundo . My Fundo didn't work but I've been fine for 6 years or so on drugs . I get Scoped EVERY 6 months too so I know and HAD HGD.

CHEERs

Edited by jcombs99 - 06 Apr 2017 at 12:39am
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steveb8189
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Quote steveb8189 Replybullet Posted: 06 Apr 2017 at 9:03am
Hi Sue
Sounds like you had an interesting start to this journey! I'm in the same position of debating the fundo but have concluded that, since the PPIs resolve my heartburn satisfactorily, I will stick with them for now.

Do you have much of a problem with reflux on the PPIs? It is the one thing that gets me down - the feeling of liquid coming up my throat when I bend over and the coughing fits I sometimes get when cycling/running.
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jcombs99
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Quote jcombs99 Replybullet Posted: 06 Apr 2017 at 12:36pm
Steve
   That's why I like scopes so much to check damage. Back in 2002 I was doing 5 jobs @ once and I was ALWAYs bend over @ the waist(5 hrs per day) putting pencil marks on the concrete .So the men could build the walls . I would squat down or crawl if the marking were close enough to stop the reflux. But then after that job finished it all stop .But the damaged was done as in HGD 2008 .

Edited by jcombs99 - 06 Apr 2017 at 12:45pm
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SueC
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Quote SueC Replybullet Posted: 07 Apr 2017 at 10:26pm
Thanks for the responses Steve and Jeff. I agree that surgery isn't to be undertaken lightly but neither is taking quite strong drugs for the rest of my life. I'm very pleased that the lansoprazole works so well but the way I see it the problem which caused the Barretts in the first place is a mechanical one. I hate the way that what I eat tries to make its way back up the oesophagus even when I'm upright, let alone when bending or lying down and even though the reflux no-longer burns like it used to it still causes problems and I'd rather nothing washed back up over those Barretts cells!
Like Chris I have come to realise that I have had a problem all my life. As a baby I had severe reflux and was supposed to have surgery at age 9 - 12 months but the doctors changed their minds, I guess things were very different 50 odd years ago. My childhood was plagued with ENT problems and at one point the 'glue ear' was so bad that I was deaf for a few years. I've only recently realised that the recurring ENT issues including operations on ears, tonsils, adenoids and sinuses are almost certainly linked to the reflux problems, so if I can stop the reflux from occurring I think I should certainly consider it positively.
Having been off the ppi tablets for the week leading up to the 24 hour ph test I was starting to suffer the burn again and in such a short period of time swallowing was becoming painful, so I'm very glad to resume the lansoprazole again and relieved that it has kicked in again and relieved the symptoms. If I'm not a suitable candidate for fundoplication I'll happily stay on the ppis and hope the side effects are minor. My follow-up appointment with the consultant is in 4 weeks time, so I guess we will then come up with a plan for the continuing journey. I admire your tenacity Jeff and you are right - to be able to control the treatment you get and to be able to fund the extra endoscopy examinations is certainly empowering and well worth the cost for you. Your journey has been long and complex but you seem to be able to look back and smile.
Sue
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chrisrob
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Quote chrisrob Replybullet Posted: 09 Apr 2017 at 4:23pm
Hi Sue,

Sorry I wasn't around to welcome you earlier. Been a rather busy few days.
I was a junior school teacher for 30 years. I know all about the bending, lifting etc.

Have you discovered this new page on Barrett's Wessex website: Patient Experiences?

You'll find stories from others who have had the procedures provided "warts and all" for those about to have, or considering, the different offerings.

My views on fundoplication are they gave me my life back.
It really depends whether your symptoms are mainly those of acid or of reflux. PPIs are excellent at reducing acid (a chemical solution) but not so good at reducing the reflux (a mechanical operation).

If you're not sure whether your symptoms are acid or reflux, check out this Symptom Checker from the Down With Acid book.

All the best
Chris
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SueC
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Quote SueC Replybullet Posted: 14 Sep 2017 at 11:42pm
Hello again. Well my journey continues and I am having my fundoplication on 15th September - so in a few hours time! Thank you to Kangoo whose recent write up on his road to recovery was very encouraging and to all of you who have provided so much information on this forum.
Last weekend I had an horrific reflux episode completely out of the blue, ate too late at a celebration meal for a friend and awoke choking horribly and struggling to breath properly for some time. I had to spend the remainder of the night sitting up. It was a good reminder of why I wanted the fundoplication surgery. The pips had done their job sonInwasn't in pain but I struggled to breath properly for hours and the contents of my stomach would only stay somewhere in that region if my torso was completely vertical. So after the surgery I'm hoping never to have that experience again.
If anyone is interested I'll write up my experiences and hope that my recovery goes as well as so many others have.
Assuming I'm well enough I'm looking forward to meeting you Chris when you come up to Essex for our first public meeting later this month - should be an interesting evening.
I'm off to try and get a few hours sleep before heading to the hospital. My first battle is to try to get them to allow me to stay in overnight as the hospital here insists it is a day procedure. I'll let you know whether I'm successful.
Sue
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chrisrob
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Quote chrisrob Replybullet Posted: 15 Sep 2017 at 7:59am
Very best wishes for a successful outcome from your fundoplication.
Hope to see you in Chelmsford if you're feeling up to it but it will be less than a fortnight after your operation so will understand if not.
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