Barrett's Oesophagus
 Barrett's Support Forum :Barrett's Support Forum :Barrett's Oesophagus
Message Icon Topic: New user - Sharing experiences Post Reply Post New Topic
Page  of 5 Next >>
Author Message
DanJ
Groupie
Groupie


Joined: 18†Jul†2013
Online Status: Offline
Posts: 87
Quote DanJ Replybullet Topic: New user - Sharing experiences
    Posted: 18†Jul†2013 at 12:27pm
Hi All

I found this website after goggling my health issues, i receive a monthly newsletter via email from Imperial Cancer, and this month, was all about the rise of OESOPHAGUS cancer, and since reading it, i have gone into a spiral of worry and stress about my health

I am 35 , i first started pains in my stomach and lower chest in Mid 2009 , it used to happen every few months or so , the pain was intense , used to make me curl up in a ball with the bathroom door closed , i remember the worst thing was you felt as if you need to be sick and empty your bowels at the same time , it would pass after about 30 minutes usually , after it happened a couple of times , i went to the doctors as i had just no clue what it could be , they said if i recall probably acid , and prescribed a monthís worth of proton pump inhibititors , i used to take them really , with no sense of exact science and nothing really came back for a little while , then in Feb 2010 , i had an attack that totally floored me , my wife called an ambulance , the paramedic gave me gas and air , which turned out to be a god send , i went into A&E and they gave me some gaviscon in a tiny cup and checked me out , and sent me home with instructions to see the Doctor

Anyway , so i went to the doctors and he recommended an endoscopy , and i recall it was the fear of this that has basically run my life since , but anyway , i went along for the procedure , and i just couldnít take the camera , i tried and tried , but it was a disaster , so i was sent away and booked on a barium meal instead , when i went to this , which as you all know is not very pleasant in itself , at one point when the table tipped me up , i remember hearing the guy watching the images saying ďyep , you can see it clearly coming upĒ ,so it turned out that it was reflux , again i was prescribed Lansoporozale , this time i was on them for quite a long time , but with no research or any real explanation of what was happening to me , i again , was taking them an hour before dinner , sometimes , just before a pub meal etc etc

I just didnít understand properly what was wrong i think , for one thing , i couldnít understand what was happening , as to this day , i still donít suffer from any heartburn , in fact i canít ever remember having heartburn since being at school!

Anyway, Things calmed down , and after a year or so , i decided to start having a day off every other day from a tablet , then in May 2012 , we took our daughter for a day out at the zoo , and i suffered another episode , this time i locked myself in the toilets and suffered through it , this one was the worst of all though , i am not going over the top when i say , i honestly thought i was dying , i was drifting in and out , everything was running through my mind , i just about opened the door and called for help , so off again to A&E and frustratingly , as always , a few hours later , it`s like nothing happened ! , so back to the doctors, back to referred for an endoscopy and back to no sleep worrying about it for weeks and weeks, from the day of that attack though, my habits changed with regards to the PPI`s , i started taking them (30mg once daily) at a time between 6.30 and 7.30 in the morning, with a glass of water, and no food for at least half an hour

Anyway, i managed to take the tube this time, but it was a horrendous experience i have to be honest, the results though were...

OESOPHAGUS Ė NORMAL
STOMACH Ė NORMAL
DUODENUM Ė NORMAL

Follow Up: Return to GI Physician and no further follow up

Advice: Did well after fentanyl/midazolam

2 cm star shaped Barrettís of non significance, small hiatus hernia and minimal gastritis only, continue with daily PPI as per symptoms, happy to review if required
Specimen taken Urease test for H.pylori (site b) lower body Ė results came back negative

So since then , touch wood , no attacks , but what was always worrying me , from 2009 till now is the general feeling of being a bit bloated , stomach not feeling `quite right` , forever drinking milk , having a store of gaviscon sachets `just in case` worrying about being on PPI for the rest of my life , worry about what damage this acid caused , and before i read this email , i was already considering going to the doctors to ask them to send me back to the specialist just so i can talk about it , now after reading the email , Iím `imagining` that i cant swallow properly from my Oesophagus to my tummy , worrying about weight etc etc

I am not sure, what i am expecting by posting my experiences, if only, that it makes me feel better to share

I have a doctorís appointment booked for the 22nd where i am going to ask to be referred , but i think they might not , if only because PPI` has stopped attacks , but i am scared now , after reading that if cancer develops , and it`s not caught , then itís a very very grim outlook

Thanks for reading

IP IP Logged
chrisrob
Senior Member
Senior Member


Joined: 01†May†2007
Online Status: Offline
Posts: 2559
Quote chrisrob Replybullet Posted: 19†Jul†2013 at 10:26am
Hi Dan and welcome.

Thanks for sharing your experiences. Sorry to hear you have had such a ghastly time of it. Hopefully now things will settle down.

Many here can relate to many of your experiences. The stomach pains sound horrendous. Did they check your gall bladder (an ultrasound)? When I had the worst pains I've ever experienced in my abdomen a few years back, it was cholecystitis (which can be associated with the acid reflux).

You will now probably be recommended to remain on Lansoprazole for life. 30mg is the low maintenance dose and it is unlikely you will develop problem side effects on the low dose.

Your Barrett's diagnosis describes the shape and size of the Barrett's but "non significant" meaning no dysplasia and low risk of progression.

Your main concern now is to reduce your anxiety as that won't help your acid production.
The chances of Barrett's progressing to cancer are very small (less than 0.5%).

To learn more about everything to do with Barrett's, I recommend all newbies to spend 20 minutes going through the talk one of our gastroenterologists at Southampton gave last year. It may be accessed via www.barrettswessex.org.uk and clicking on the JOURNEY tab, or by clicking on this link.

All the best

Chris
IP IP Logged
DanJ
Groupie
Groupie


Joined: 18†Jul†2013
Online Status: Offline
Posts: 87
Quote DanJ Replybullet Posted: 19†Jul†2013 at 10:32am
Hi Chris , and thanks for the link , i will watch it in peace when i get home later and the kids are safely stored away!
 
I did actually miss that part out , i did have an ultrasound yes , as we thought it might be gall stones , but all was clear in that regard , i was really `disspaointed` though i recall !
IP IP Logged
DanJ
Groupie
Groupie


Joined: 18†Jul†2013
Online Status: Offline
Posts: 87
Quote DanJ Replybullet Posted: 19†Jul†2013 at 10:34am
Oh and that is really helpful about the diagnosis , i couldnt tally that on google with wethere i HAVE barretts or not , now i know that i do , but in what context to put it in, i am thinking that due to all the cuts etc , the doctors will try to push me away from going to the specialist to save money , is that too cynical i wonder or is it prudent on their behalf!
 
My specialist , in case of interest is Dr George Macfaul who worked on me at Milton Keynes Hospital , just for interests sake!
IP IP Logged
chrisrob
Senior Member
Senior Member


Joined: 01†May†2007
Online Status: Offline
Posts: 2559
Quote chrisrob Replybullet Posted: 19†Jul†2013 at 11:00am
Sorry, I don't know George Macfaul nor have had any dealings with the Milton Keynes hospital but I'm sure they do a good job.

The problem is that relfux and Barrett's is so common now. There are probably between 750,000 and one million in UK with it and for most of us, nothing is going to change. It doesn't get better by itself but usually remains unchanging playing a role to protect the rest of our body from acid attack (by changing the nature of the cells lining the oesophagus to make them more acid resistant).

The practice at my local hospital is to have the 2 yearly surveillance (following NICE guidelines) and only have follow up clinics if requested - or if something has changed since th elast scope. Called "virtual clinic", we receive a copy of the summary letter sent to our GPs and can phone or email our gastro nurse practitioner if we ever have a problem. It saves time (for patients and specialists alike) and money.

But I do appreciate new patients need reassurance which this forum, and our regional support charity attempt to provide.
IP IP Logged
DanJ
Groupie
Groupie


Joined: 18†Jul†2013
Online Status: Offline
Posts: 87
Quote DanJ Replybullet Posted: 23†Jul†2013 at 9:04am

Hi Chris 

Just wanted to update you on my doctors visit yesterday , all in all , i am not sure it was worth going at all , i took along my paperwork from my endoscopy last year , said to the doctor , i would like to see the specialist to talk about things , as i wanted to know if the way i feel sometimes , is `normal` or whether it is worth investigating again , basically he reassured me i am OK , havenít got Cancer and to try to continue being healthy , i had had blood tests a couple of weeks ago , and they came back fine (unrelated just fatigued) , i also have this pain between my shoulder blades which my mind is racing with imagining all sorts , but i know this could be poor sleep and everyday life..

 

At the end of the day , i told him i have a sensation of food not going further down than my throat etc , he felt around my neck and upper shoulders and looked in my throat , and puts it down to stress , in a way , he may be right , things are really challenging at home at the moment so possibly...he looked at my report from the endoscopy and pointed to the barretts of `no significance` and said that means the specialist really wonít need to see me again

 

I canít work out if he has just fobbed me off, or he genuinely doesnít believe there is any need to have any sort of follow up checks

 

The problem i have , is he is the lead doctor for the practice so if i donít agree with him , Iím not sure where i can turn..

 

Thanks for reading!



Edited by DanJ - 23†Jul†2013 at 9:07am
IP IP Logged
chrisrob
Senior Member
Senior Member


Joined: 01†May†2007
Online Status: Offline
Posts: 2559
Quote chrisrob Replybullet Posted: 23†Jul†2013 at 9:49am
Hi Dan,

I don't think you were being fobbed off.
Unfortunately with the changes that have been made to the health service, with doctors now the ones in charge of everything (including funding), there is a grave risk (pun intended) that they will feel too full of their own importance and believe they know all the answers rather than spend money on sending patients to specialists.
Of course, if you're really concerned you could see a specialist privately.

Why is it when we have a health service that probably still is the envy of the world, we are trying to change it to match the unsatisfactory provision that exists in the states (may have an argument with Jeff Coombs over that) whilst at the same time, recognising the failings of their system, the US is trying to move towards implementing a system similar to ours?

The swallowing difficulty though is probably nothing to get too concerned about. It is probably globus. It used to be known as "Globus Hystericus" as it may be associated with stress. However, if it continues or gets worse, you will need to return to your doctor and insist on a specialist referral to ensure it isn't a tumour.

That said, the vast majority of us with Barrett's will not progress to anything worse and PPIs and surveillance will ensure that is the case.

Cheers

Chris
IP IP Logged
DanJ
Groupie
Groupie


Joined: 18†Jul†2013
Online Status: Offline
Posts: 87
Quote DanJ Replybullet Posted: 23†Jul†2013 at 10:00am
Thanks for your post Chris , it is a worrying time for health problems for all of us , with the funding cuts etc , absolutley when i read in the news etc that doctors would be in charge of budgets , it was OBVIOUS that unless symptoms were screaming at them , then no referral would be forthcoming , even from things such as back pain etc , if there is a chance to not refer to a physio if they can help it , they wont (my wifes experiences)
 
I did read on globus before i went to the doctors , and as soon as i mentioned that , he seemed to go with it , he was happy to say he was no expert on Barretts etc and Dr Macfaul was , he even pointed to the `a` on the enoscopy diagram showing the oesphagues tube and said its really small ! , i am sure the `a` was just to show what that area was called , not the to scale size of the Barretts! , he also said the specialist said on the report continue PPI as per symptoms , and that i hadnt had any so could even come off them!
 
This showed to me he didnt have an understanding , not in the way i hoped he would , though he was aware there were differnet schools of thought on how to best treat the condition
 
 
IP IP Logged
paulb
Groupie
Groupie


Joined: 06†Dec†2012
Online Status: Offline
Posts: 76
Quote paulb Replybullet Posted: 23†Jul†2013 at 7:01pm
"Why is it when we have a health service that probably still is the envy of the world, we are trying to change it to match the unsatisfactory provision that exists in the states (may have an argument with Jeff Coombs over that) whilst at the same time, recognising the failings of their system, the US is trying to move towards implementing a system similar to ours?"

Chris, the care I'm getting in the states is simply world class. If you have good insurance its simply amazing. I'm scared to come back to the UK for my ongoing healthcare because it is, by necessity, a cost based population driven service that cannot cater for outliers.

Paul
IP IP Logged
jcombs99
Senior Member
Senior Member


Joined: 23†Mar†2008
Online Status: Offline
Posts: 1969
Quote jcombs99 Replybullet Posted: 23†Jul†2013 at 7:32pm
   I TOAD yous Mr. Paul a long time ago yous was smart( you will do well may cost you some $$$) .It's VERY hard to give FREE healthcare to people who don't work and get FREE housing , FREE Food ect .Then they complain , its a simple matter of money . I REALLY DON"T THINK ANY USA DOCTOR IS BETTER THAN A UK DOCTOR . But we have 3x the people and my hospital is VERY small but IF they don't do well they go Down Under the Final Time not brought back by the NHS .
   Lots of Unions here are now bitchen about the NHS (ObamaCARE) ...   

    Too Late Yankee Fools Now Live with it !!!!!!!!!!!!

Jeffrey Combs

IP IP Logged
Page  of 5 Next >>
Post Reply Post New Topic
Printable version Printable version

Forum Jump
You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot delete your posts in this forum
You cannot edit your posts in this forum
You cannot create polls in this forum
You cannot vote in polls in this forum