I have a strange idea! Would appreciate input

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aeshleyrose
Veteran Member


Date Joined Jul 2011
Total Posts : 656
   Posted 8/30/2011 8:57 AM (GMT -6)   
Hey all!

I am currently on a waiting list to get a gastroscopy. My doctor did warn that it would probably be over a month, so I'm hoping I will get in within the next 3-6 weeks.

My symptoms (of course) couldn't be more non-existent now that someone's going to be looking around my tummy. Kind of like a puppy who only trashes your house when no one is home ;)

I am wondering... does anything think it would give a better, more accurate picture of my normal life if for about 2 weeks before the gastroscopy that I would NOT avoid triggers? I eat a VERY regimented diet right now - I haven't had a single serving of coffee, chocolate, alcohol, soda, pizza, tomatoes, tea, anything spicy OR anything fatty in four months.

While I am overjoyed that I feel better, I don't want to keep playing this cyclic game of "oh I have symptoms, ooh this is bad, cool! they're going away! Oh, wait, they're back". I am also afraid that if everything is normal, nothing will change with my care and I will basically just be riding the "I feel good!!" wave until it breaks and I'm back in GERD hell again.

What do you all think? I would NOT stop taking my PPI... I don't want to throw the results of the test, but I don't feel that how great I feel now is an accurate picture of my overall health because my flare-ups are so acute.

Any ideas, thoughts or feelings about this issue are very appreciated.

I hope everyone feels well, and healing thoughts to all,
Ashley confused

Darryl
Regular Member


Date Joined Aug 2011
Total Posts : 100
   Posted 8/30/2011 9:23 AM (GMT -6)   
Howzit Ash -

Funny question!!??
First, do you not think you may be getting better? That the treatment / diet / lifestyle modifications are actually helping, and heaven forbid, healing you? If so, is that not sustainable for a the period it might take to actually heal you?
I don't know. Just a question. Should you not persist like that for a while and see where that takes you?
But then - on the other hand. Are you in fact curing yourself, or merely hiding the symptoms for an indefinate time?
Tough - especially since my opinion is that it is not natural / normal to take medicines, especially PPI's for the rest of your life.
And the AGAIN - your other option, surgery, is not natural either. It is more so than PPI's though.
It does however make sense though to opt for the surgery, as you know I have, if your problem is a mechanical one. ie, after all tests reveal a large Hiatal Hernia, and a non existant LES valve.
My suggestion is not to jeopradize your health. Continue as you are looking after yourself, as that's the best thing you can do for your body. And if your problems are mechanical like I said, well then any good ENT will easily identify that with the endoscopy. It's not going to hide away just because your feeling a little better at the moment.
If your GERD is caused by othe issues, ph levels etc etc, there may be better ways of treating it than surgery.
I don't know. Just my two penny's worth. I think that when they get a look down there, they should be able to tell you where to go from there. If they infact are good doctors, and in any way concerned about your wellbeing - that is never a given.
But I do know how you feel - that they gonna inspect you and say that it's all in your head. There's nothing really wrong with you. Send you out to spiral down till the point where it becomes desperation stages, and only then worry about the appropriate steps to follow. But you say you're from Finland? They have high quality medical Doc's up there don't they!? How old are you know anyways Ashley>

Take it easy
D


Best of luck though -

Darryl
Regular Member


Date Joined Aug 2011
Total Posts : 100
   Posted 8/30/2011 9:23 AM (GMT -6)   
Howzit Ash -

Funny question!!??
First, do you not think you may be getting better? That the treatment / diet / lifestyle modifications are actually helping, and heaven forbid, healing you? If so, is that not sustainable for a the period it might take to actually heal you?
I don't know. Just a question. Should you not persist like that for a while and see where that takes you?
But then - on the other hand. Are you in fact curing yourself, or merely hiding the symptoms for an indefinate time?
Tough - especially since my opinion is that it is not natural / normal to take medicines, especially PPI's for the rest of your life.
And the AGAIN - your other option, surgery, is not natural either. It is more so than PPI's though.
It does however make sense though to opt for the surgery, as you know I have, if your problem is a mechanical one. ie, after all tests reveal a large Hiatal Hernia, and a non existant LES valve.
My suggestion is not to jeopradize your health. Continue as you are looking after yourself, as that's the best thing you can do for your body. And if your problems are mechanical like I said, well then any good ENT will easily identify that with the endoscopy. It's not going to hide away just because your feeling a little better at the moment.
If your GERD is caused by othe issues, ph levels etc etc, there may be better ways of treating it than surgery.
I don't know. Just my two penny's worth. I think that when they get a look down there, they should be able to tell you where to go from there. If they infact are good doctors, and in any way concerned about your wellbeing - that is never a given.
But I do know how you feel - that they gonna inspect you and say that it's all in your head. There's nothing really wrong with you. Send you out to spiral down till the point where it becomes desperation stages, and only then worry about the appropriate steps to follow. But you say you're from Finland? They have high quality medical Doc's up there don't they!? How old are you know anyways Ashley>

Take it easy
D


Best of luck though -

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 8/30/2011 10:09 AM (GMT -6)   
Hi Ashley, I found having a gastroscopy here in the UK was a lot about the doctors ticking boxes and a lot less to do with what it would do for me! If you feel your symptoms are highly likely to flare up, then you could ask to defer your scope. If after a while you have had no flare up you could just get it out of the way in any case.

I was very symptomatic when I had my first scope, and it was entirely normal. Three years later identical symptoms returned and I had another, this time it showed mild inflammation and a small hernia. On both occasions the scope made no impact on the management of my symptoms; they simply want to rule out stomach cancer so that they have the green light for continuing to prescribe ppis.

If you have the scope as you are now, it would still show if you had a hernia or Barretts (if they do biopsies) and they may also test for Helicobacter and coeliac disease at the same time. Those are useful things to rule out (or treat if found).

I think your options are to have it now or wait say 6 weeks to see what direction your symptoms are going in. But find out if they will continue to prescribe ppis if you don't have it done before too long, and remember their agenda will be driven by their policy on who must have a scope and when, rather than using it to fine tune your treatment!

I'm so glad you're feeling good now.

MMM
New stuff: GERD. Interstitial Cystitis
Lifelong stuff: Food allergies, eczema, asthma

mock turtle
Regular Member


Date Joined Mar 2011
Total Posts : 467
   Posted 8/30/2011 11:34 AM (GMT -6)   
Hi Ashley

my suggestion is, NO, i would not fall off of my diet and eat trigger foods so that the "problem" would be more obvious to the docs

but then again i am not trying to qualify for surgery, and if i were, .... hmmm.....then id have to think about this some more

maybe a conversation with people you know in the nursing school might give you valuable information on how to play this

my suggestion...and btw, its worth exactly what you are paying for it...nothing!, my suggestion is try to postpone the procedure for a month and see if you continue to improve

sending you best wishes

mt

somedaysarediamonds
Regular Member


Date Joined Jul 2011
Total Posts : 363
   Posted 8/30/2011 11:57 AM (GMT -6)   
The only testing where I was encouraged to induce symptoms was the pre-op testing for my NF surgery.

Just from my 30+ years experience with reflux I can't imagine making myself worse on purpose just for a scope. I was always bad enough that considering something of that nature wasn't necessary.

When I was made to eat the wrong stuff prior to the manometry testing I thought I was going to croak so I'd think twice about the idea.

Hope things go well.
Rita
Falling down is part of life, getting back up is living. -Unknown

Lap Nissen Fundoplication August 1, 2011

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/30/2011 5:21 PM (GMT -6)   
hmmmmm, That's a tough one...I don't know..
Joy

sunbeam48
Veteran Member


Date Joined Jun 2011
Total Posts : 795
   Posted 8/30/2011 5:56 PM (GMT -6)   
If it were me, I would stop taking the PPI, but continue with good eating. Maybe you would heal and not need the PPI any more. But you will get rebound heartburn if you suddenly stopp your PPI, I'm not sure what the best schedule is for tapering off.

davinci817
Regular Member


Date Joined Aug 2011
Total Posts : 119
   Posted 8/31/2011 9:54 PM (GMT -6)   
Like others, I would keep treating myself well.

Had a scope two weeks ago and had been doing everything right for a long time prior but inflammation was still in the lower esophagus and the lower stomach.

Sure glad I didn't make myself feel worse so they could see the exact same thing if you get my drift. Don't cancel your appointment. Thought the same thing myself, feeling better, maybe I shouldn't go. Glad I did go and glad my symptoms were proven not to be just in my head despite me feeling better.

aeshleyrose
Veteran Member


Date Joined Jul 2011
Total Posts : 656
   Posted 9/3/2011 3:06 AM (GMT -6)   
Hey all! I got my letter today saying that I would be contacted for an appointment within the next 3 months.

I can't even tell you how scant and scarce my symptoms are! I haven't felt this great since I did my failed "Let's-Quit-Nexium-And-See-What-Happens" experiment. If I feel okay by this weekend, I am allowing myself ONE piece of pizza. I haven't had pizza in four months! This next weekend marks 2 whole weeks without any significant symptoms.

Darryl,
I am 26. I have high hopes for Finnish doctors! I definitely do think it's a possibility that I am either healing or on the road to it. I've changed so many things! It was so frustrating at first because my symptoms kept getting worse and worse, but now all the hard work seems to have paid off. But I am asking myself the same question you asked me - is it actually healing or are the symptoms just playing Hide and Seek? It's so hard to tell confused

However, you make the most excellent point that if it is a physical abnormality (such as a hernia), it can't hide from the scope. Answers like that are the reason I come to (and love) this site!

I will not cancel my scope and will continue to eat like a very healthy little birdie.

Thank you everyone! I'll let ya know when I have a date and what the results are.

I hope everyone feels well,
Ashley

Ade
New Member


Date Joined Sep 2011
Total Posts : 10
   Posted 9/3/2011 1:18 PM (GMT -6)   
My mum was 82 and had a Laproscopic gastrectomy in 2009 for stomach cancer, before that she had the scope just numbing her throat she stayed awake the results were a small blemish in the stomach which was cancerous gall stones and a need to remove her gall bladder of which shehad an abnormal extra valve and a hiatus hernia,she then had a loged gall stone removed with the camera then her stomach and gall bladder was removed together by key hole surgery a very brave lady indeed I thought.She was goiing to be featured in the lancet journal for pioneering surgery by key hole but it failed she then had a further two operatios as complications were caused the surgeon at the RVI hospital in uk was devistated it didnt work out now she suffers with a hiatus hernia which was found at the time. I think all this was brought on because Her daughter My sister died a year before she was devistated being low can bringthings on my sister died aged 50 of cancer/ sudden heart attack.If you have to have a camera go for it Ashley im sure you will be fine and the things they an do is amazing.My mum was the extreme patient having many complications since all that she will not return to hospital for check ups she only wants treatment at home by her GP I dont blame her she has suffered enough.

Post Edited (Ade) : 9/3/2011 12:22:05 PM (GMT-6)


dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 9/3/2011 2:05 PM (GMT -6)   
Hi Ashley,
 
If you have been suffering from GERD for many years, but have been on PPI's, no matter what your symptoms you may very well show a perfectly healthy esophagus.  (That's what happened to me.  I've had 3 and none have come out bad.  The one time I could guarantee that the doc would see esophagitis was when I was hospitalized for asthma that was caused by GERD.  At that time an endoscopy was the very LAST thing I wanted, as I feared it would irritate my esophagus further and make my recovery that much more difficult.)
 
The value of an endoscopy is that it will show whether there is a problem there, and can if the LES is open a bit or closed tightly. (If you're having intermittent problems, that could be random, though.)
 
I would not recommend that you not try to get bad things going for yourself.  It's just not worth it.  Write your GERD history, symptoms, frequency, triggers, length of flare ups, things you're doing proactively to stop the problem (ie. elevated bed or wedge, avoiding GERD triggers, not going to bed after eating, etc.)  Be assertive and share how frustrating your GERD problems are and how debilitating at times.
 
That way you can check to see if all is well in your esophagus (always a worry for those of us with GERD) but will be armed with a very convincing case for why you need help.
 
If a Nissen surgery is in your future, having esophagitis when you're getting scoped isn't a prerequisite.  There are a lot of factors involved in that decision.  It may take a while, but if you need it, it'll happen.  I waited four long years of poor health before my GI doc finally sent me to a surgeon. 
 
Patience, accompanied by Perseverence will be required.  Don't give up, but let it unfold.  That said, be assertive and advocate for yourself.
 Hang in there, Ashley.  We're with you!
Denise
 
 
 

Post Edited (dencha) : 9/3/2011 1:08:35 PM (GMT-6)

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