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Went to the doctor again...

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Posted 11/1/2012 2:45 PM (GMT 0)
So I went to the doctor again today (this is the 2nd GI doctor btw). They've already done a barium swallow, endoscopy, hida scan, gallbladder sonogram, stomach emptying test. I still have heartburn while on 60mg of PrevAcid a day. A month ago I felt like the doctor blew me off and was just killing time by telling me to keep a food journal. I felt hopeless but gave him the benefit of the doubt.

The doctor does know for a fact I have severe acid reflux, hiatal hernia, my lower esophageal sphincter doesn't close and is wide open, esophagus has been eroded, etc etc. I've lost 30 pounds in 3 months time. (just trying to do quick cliff notes, I know some of you have read my previous posts though).

I made print outs of:
1. what triggers my heartburn
2. what is "safe" to eat
3. my reflux symptoms
4. my other health issues that I believe are caused by the GERD (sinus, asthma, tachycardia, etc)
5. details on my pharmacological grade vitamins (and asked why they give me heartburn)
6. my food journal (including times of when i ate and details, weight loss info and what caused issues)

So he comes in extremely late... I'm already cranky from this (and the cold I have).

Him: what kind of symptoms do you have now?

Me: The same things, granted I don't have the 'heart attack' feeling of dying from heartburn pain while on PrevAcid. Then I hand him my print outs.

Him: "If the vitamins give you heartburn, don't take them"

Me: "The PrevAcid makes me feel awful, tired all the time, weak, exhausted, sick. I feel I need vitamins. I don't want to be on medicine forever, I've told you this."

He has me get on the exam table, checks my breathing. I get down and he says.

Him: We'll try a different medicine this time around. I'll give you samples. You could have IBS.

Me: Aren't there other options besides medicines? And I don't feel like I have IBS.

Him: Everything is connected, you could have IBS. You'll need to take medicine for GERD.

Me: I refuse to take medicine for the rest of my life.

Him: The other option is surgery, but if you don't respond to medicine, then surgery won't work and after a few years you'll need medicine again. Try this new medicine and call me in 2 weeks. You didn't have blood work done so I can't tell anything from that. And no wonder you have heartburn, you're eating everything you shouldn't! (he was looking at my "trigger" list!!!).

Me: Well, if you paid attention, you'd realize that is the list of triggers, here is my food diary (I put it in front of him and he laid the trigger list paper on top of it) you had me keep, I don't eat anything from that trigger list AT ALL, I'm terrified of those foods. I'm fed up with this, I'm exhausted and sick of feeling awful, why can't you figure that out?!

Him: I'm doing the best I can.

Me: Apparently that isn't good enough.

Him: Try these new pills and let me know how that works out. Then if not we can do a pH test while you are on the medicines to see how they are working. You need to be on them while we do the test to see if they are even working.

Me: When? In a few more months? Schedule an appointment and can't get in to see you for months at a time, just to be talked to for 5 minutes and given different meds and still feel awful?

Him: In 2 weeks call me and let me know how it's working out. We can schedule the test from there. I still think you have IBS.

Me: Whatever, I give up. I'll take the pills and see how these help. Thanks.

Sorry that was so long. Just want to give all details. So he put me on Dexilant 60mg per day. I'm pretty offended that he blew me off before and told me to keep a food journal, yet didn't even GLANCE at it. What was the point?!

Since I've been eating healthier I don't have IBS symptoms at all. I don't know much about IBS so who knows. I do know that I have classic heartburn symptoms and I'm sick of feeling awful all the time.

I didn't even bring up LINX because I was about to start crying by the end of the conversation. I am keeping my Nov 19 appointment with the LINX surgeon and will find out more from him.

I guess, I'm just frustrated and needed to vent. I feel like I'm getting NO WHERE. Is this common with the doctor? He's not being outright mean, I think he's a nice guy, but I feel like he's just blowing me off. I hate doctors who just push pills and don't listen :(

Does anyone know what he's going to be checking in my blood? They said I don't need to fast beforehand, so I'll go later today or tomorrow to have them take it. I was so worked up I couldn't do it right after being there (I freak out over needles and already felt too stressed).
Posted 11/1/2012 3:39 PM (GMT 0)
Great Vent so let's brain storm and others can add to this :-)

1. You posted, " The doctor does know for a fact I have severe acid reflux, hiatal hernia, my lower esophageal sphincter doesn't close and is wide open, esophagus has been eroded, etc etc."

 

I am wondering why he keeps on tossing meds at you if he has all this info so why not do the Ph study and then move to surgery ?  Just me thinking out loud.

2. IBS - well most people that have severe IBS issues will see a GI specialist to rule out anything else first and then a dx is made on symptoms. Blood test for IBS would be a CBC with differential as knowing why your Hemoglobin level is would be important. 

3.  The other thought that crosses my mind re blood tests - is this Dr. testing you for H-Pylori ?  Not that I think this is your problem - just brain storming.

Testing for the H. pylori infection may be performed on blood, stool, or breath samples. Also, biopsies or small bits of tissue from the lining of the gastrointestinal tract obtained during endoscopy can be tested for the presence of H. pylori.  Which leads me to one last thought - did your Dr. take biopsies during your scope ?

I am sure others will be along to tag onto this thread.

Kindly,

Kitt

Posted 11/1/2012 4:07 PM (GMT 0)
Thanks for the help!

1. I've been wondering the same thing. I am assuming because of this part that he said? "The other option is surgery, but if you don't respond to medicine, then surgery won't work and after a few years you'll need medicine again"

I am also assuming he is referring to Nissen?

2. I used to think I had IBS but since I've changed my diet in the last 3 months I think it was mostly diet caused IBS? Then again, I've been on PrevAcid for that time frame too, which can constipate you, right? Maybe that "balanced" out the diarrhea/IBS like issues?

3. They did do biopsies while they did the scope. I am negative for H. pylori. I requested my records and back in 2007 during that scope, also negative.

I know doctors have to rule everything out but I just feel like why did he waste the last 4 weeks with this "do a food journal" thing if he wasn't even going to look at it?! Hopefully I'll get the pH test quickly and the results before I see the LINX surgeon and see his thoughts on it.

I am so glad I found this forum. It's comforting to know I'm not the only one dealing with this. Reading through other posts too, people seem to have the same frustrations with their doctors. I'm trying to be patient as I can be, but it's hard when I don't feel well, every day is a battle about food/heartburn and the medical bills just keep rolling on in!
Posted 11/1/2012 4:18 PM (GMT 0)
I am sorry for your frustration. We have all been there and understand. What type of diet are you on?
Posted 11/1/2012 4:28 PM (GMT 0)
I pretty much eat grilled salmon, grilled chicken, tuna, grilled veggies, greek yogurt, sunflower seeds, water, 1 coffee a day (i know this one is a bad thing... I'm trying to ween off), kashi granola bars, tortilla chips, salad with ranch (just the lettuce), sweet potatoes, turkey deli sandwich (just turkey, cheese and mayo), sour pickles (if i eat some before bed i don't get heartburn all night - which is weird?)

umm that's about it.. it's basically the same few foods every day :(
Posted 11/1/2012 4:34 PM (GMT 0)
NoDoubtLove

11 years ago I thought I had a peptic ulcer and was tested for H-Pylori = negative.  Then my GI Dr. did a colonoscopy and all was well so the final outcome was IBS-C. 

I certainly understand your frustration my new friend as I have been right where you are many times.

Your Drs. comment, "The other option is surgery, but if you don't respond to medicine, then surgery won't work and after a few years you'll need medicine again".  This is where I get to make a smarky comment   smhair - if medication was the cure all than why do so many of our members do well after their surgical procedures ???

I am in your support corner so keep on putting one foot in front of the other !

Posted 11/1/2012 5:29 PM (GMT 0)

stkitt said...
NoDoubtLove
11 years ago I thought I had a peptic ulcer and was tested for H-Pylori = negative. Then my GI Dr. did a colonoscopy and all was well so the final outcome was IBS-C.

I certainly understand your frustration my new friend as I have been right where you are many times.

Your Drs. comment, "The other option is surgery, but if you don't respond to medicine, then surgery won't work and after a few years you'll need medicine again". This is where I get to make a smarky comment [img]/community/emoticons/smhair.gif[/img] - if medication was the cure all than why do so many of our members do well after their surgical procedures ???

I am in your support corner so keep on putting one foot in front of the other !

Thank you! We all we as much support as we can get, that's for sure!

I thought it was kinda a rude comment for him to say. Very close minded :/ I could tell he was getting irritated with me. I wasn't being so nice after I felt like he was just blowing me off. After we talked I could hear him putting notes into his voice recorder and he said "patient is extremely frustrated with the situation and not happy at all"... lol duh!
Posted 11/1/2012 7:34 PM (GMT 0)
Be careful with mayo, ranch and cheese...all high in fat unless they are fat free. Have you considered gluten free? I am on a gluten free, low acid, low fat diet and it has helped me a lot.
Posted 11/1/2012 7:37 PM (GMT 0)
When I make them they are fat free but at restaurants they probably aren't! I eat them on wheat bread too, I tell myself it's healthier than white... it is, right?

I don't know if I have gluten issues? I basically try to do the low carb, fresh and healthy diet approach, just because that is what seems to sorta work lol
Posted 11/1/2012 10:15 PM (GMT 0)
NDL-

Well I hate it when they say if the meds don't work then surgery won't either. The meds didn't work for me, but the nissen has worked great. Reason is my LES wouldn't close....so there was no way the meds would work. The mechanical problem had to be fixed.
Seems simple to me, but then again I am a mechanic.

Don't give up. I would get a 2nd opinion for sure.

Take care,
Bill
Posted 11/2/2012 12:53 AM (GMT 0)

opnwhl4 said...
NDL-

Well I hate it when they say if the meds don't work then surgery won't either. The meds didn't work for me, but the nissen has worked great. Reason is my LES wouldn't close....so there was no way the meds would work. The mechanical problem had to be fixed.
Seems simple to me, but then again I am a mechanic.

Don't give up. I would get a 2nd opinion for sure.

Take care,
Bill

See! This right here... I asked him about that!! My LES doesn't close.. UGH... And sadly enough he IS my 2nd opinion!! The first guy was just mean in general. I do have an appointment with a LINX surgeon. I'd like to get his opinion on it.

What's great is that I kept looking at him like, but isn't it logical to fix the LES problem?! I'm a programmer, so I get it, 1's and 0s, it's just logic. The LES doesn't close, means acid comes up. Fix the LES to close and the acid doesn't come up.

I swear I just want to scream!
Posted 11/2/2012 2:05 AM (GMT 0)
Hi NoDoubtLove,

Seems like I am no longer feeling in love :) First off let me say that I get what you are saying, and feel your pain. We are all going through this to some degree so we all get the frustration. I've felt just like you. But lemme tell you that I kind of feel for your Dr. too (or, say, GI Dr's in general). Lemme tell you why.

I've been dealing w/ this for 5 years with a few doctors. If you are on full medication, heartburn symptoms are almost always not acid exposure. Instead, they can be hypersensitivity or functional heartburn. So the theory goes that if you don't get relief from meds, you are symptomatic to normal acid exposure and thus surgery won't help you. As a Dr. told me, after the surgery I'd probably feel the same and the only thing new would be some holes in my stomach. Now I know some people do have success, like Bill, and that is awesome...but I know what the Dr's are afraid of too, and I believe them in their sincerity. Then it becomes an individual decision based on risk/reward, and if you want to do it (like Bill did), then go for it and lets all hope for the best...but I can see why a Dr. won't want to go out of their way to recommend surgery in that case. I think they have studies to rely on to support their position, even though on an individual level surgery could be the answer for any one of us.

I think we need to put ourselves in the shoes of the doctors. GERD is a chronic condition that is notoriously difficult to treat sometimes. A number of patients, like many of us, fall through the cracks of treatment. And the Dr's need to consider us outside the box and do their best to help treat us. But it isn't set up for them. Its all ad hoc...and in that approach, the "try this pill and lets see" kind of makes sense. I mean, they aren't going on anything. They are blazing the trail because standard treatments have failed and theory would tell them surgery isn't a viable option at this time.

Just today I corresponded with a GI and geneticist @ Duke University who, according to her, spends "75% of her time in researching esophageal disease". The first thing that she told me was "There is still much that we do not understand about Barrett's esophagus, esophageal cancer development, and reflux disease. " A lot of people are trying hard to learn more, but its an ongoing process.

With the food diary, you have a good point. But I think a lot of Dr's use it as a tool for the patient...if you do a food diary and don't notice anything of note in it, he probably figures he won't either. Maybe it was more an auto-diagnostic tool for you than for him to look at and review.

I never thought I'd defend doctors so much, trust me. I have had points where I felt exactly like you are feeling now, and I wouldn't be surprised if one of my old posts looks similar to yours here. But I've been the type of person that has been researching and contacting people about GERD since this all started with me 5 years ago, and I feel like I have learned enough to know that Dr's in this area are not in an enviable position.
Posted 11/2/2012 2:24 AM (GMT 0)
Wheat has gluten whic is fatty and causes digestive problems. The book "wheat belly" is a good resource. Today's wheat is not the wheat that people ate 50 years ago.
Posted 11/2/2012 2:36 AM (GMT 0)
Just to be clear, I do think you should get a PH test if you want one, and that the Dr. should agree to that. I think the run-around treatment-wise is much more acceptable after sufficient testing has been done.

I am just running on my personal history. After 4 years of what I viewed as incompetent to egregiously incompetent GI's, I worked hard to get in to see a very well known GI recommended to me by the Cleveland Clinic. This Dr. has more knowledge than my previous doctors and is much better at explaining it - and he now has my almost complete trust - but surprise, surprise, he is treating me not much differently than my previous GI's. In fact, I can't think of anything that he disagrees with about their past performance.

On a side-note I am so gung ho on GERD and esophageal cancer that I wanted to go to Halloween parties as esophageal adenocarcinoma. I thought I'd really enjoy myself. But my wife thought it would be awkward, especially with her co-workers, and so I went as a pirate. No surprise that I DIDN'T enjoy myself.
Posted 11/2/2012 10:19 AM (GMT 0)
ARM-

I do understand your logic, but if if the LES won't close on it's own how will meds stop abnormal reflux? I waited close to 18 years before I decided to go with the Nissen. The only reason I did this was I wasn't aware of a surgical option until 6 months before I went with it.
Yes you can be hyper-sensitive to normal amounts of reflux, but if the mechanism is repaired the esophagus can eventually heal and not be hyper-sensitive. I had this for the first 6 to 7 months with my 1st nissen.
If the LES does function with out surgical help and the person doesn't respond to meds then I believe there is a lot less of a chance of the nissen being successful. This, though, isn't the case with NDL. She has already been told her LES doesn't close.

Take care,
Bill
Posted 11/3/2012 12:03 PM (GMT 0)
Hi Bill,

That is a good point, and I might have overlooked that wide-open LES issue. But I think if a PH test shows normal reflux, and the person is symptomatic (blown LES or not), the dr's view it as hypersensitivity or something else. Because no wrap will tighten so much that a normal amount of reflux doesn't occur, and in theory that is what the person is feeling.

I wasn't aware that after the surgery the hypersensitivity could be healed, so thanks for educating me on that. And like I said I think that I overlooked that NDL has an open LES, so I am probably wrong with what I wrote above.

How does a dr. diagnose a wide open LES? Is that on the endoscopy, when they turn the camera and view up from the stomach towards the esophagus?

Thanks.
Posted 11/3/2012 3:10 PM (GMT 0)
ARM,

Good Morning and no I don't have a candidate for your Mother but I will keep looking for you :-) smhair

A gastroscopy would be able to identify a wide open LES and most GI Physicians take pictures during a endoscopy therefore the Dr. should have a picture to verify this finding. A wide open LES above a hiatal hernia  allows reflux to occur. 

NDL, let us know how you are doing and what else can we do for you ?

 

Posted 11/3/2012 7:17 PM (GMT 0)
OK. I know that doctors inflate the stomach with air during an endoscopy, right? And that sometimes leads to false diagnosis of hiatal hernia, right? Because if they put in too much air, it can appear that the person has a hernia when they really don't. IIRC someone posted about being diagnosed with a HH but then having it revised in a later endoscopy, and I myself have had endoscopies where they say I have one and others where they say I don't. I hate to get into minutiae but is a 'wide open LES' a clear diagnosis, or could it depend on the endoscopist?

No need to answer if I am boring people, which by now I may be :)

I thought that guy would be a great guy for my mom b/c I want him as a step-dad :), but I am not discerning. At the end of the day anyone in NC with a pulse who can put up with a 'crazy' lady with 3 dogs and like 1 friend please contact me :) I'm just kidding. She has no friends.

Post Edited (theacidrefluxman) : 11/3/2012 1:20:52 PM (GMT-6)

Posted 11/3/2012 9:48 PM (GMT 0)
ARM

I bet your Mom is charming - you naughty boy !

Barium esophagograms or swallows are helpful for identifying structural abnormalities of the esophagus and esophageal hiatus, which include esophageal rings, strictures and ulcers, and hiatal hernias.  Barium swallow is not sensitive in the detection of actual reflux, except in the occasional patient who has a wide-open LES and free reflux.

I just used up all my neurons so I am off to take a nap.

Later peeps,

Kitt

Posted 11/3/2012 11:31 PM (GMT 0)
OK, thanks.

On my barium swallow I had 'notable relflux up to the level of the clavicle' or something along those terms, which sounds like free reflux caused by an open LES according to you. Still, my Dr. says I am not a good candidate for surgery. I'll ask him next time about this :)
Posted 11/4/2012 12:35 AM (GMT 0)
Thinking! It is the "practice" of medicine.
Wouldn't the manometry test be helpful as it measures the Total LES length and intra-abdominal LES length, and LES pressure. This would tell you how 'open' the LES is. I would ask the doctor what he used to determine that you had an open LES and show it to you during the visit. Kinda make him prove it to you. Also suggest that you get copies of all your test results (pre and post surgery)and closely review them yourselves. This can show you value of your NF or Linx.
Posted 11/4/2012 2:51 PM (GMT 0)
if I were NDL, I wouldn't be so happy to see the lack of details given by the doctor.

"esophagus has been eroded"
what's the grade of the esophagitis? any ulcer? Barretts?

"my lower esophageal sphincter doesn't close and is wide open"
what's the resting pressure? is it caused by a big hernia? how many cm?

All these details are critical to decide between a pharmacological treatment or a surgical treatment

To NoDoubtLove,

do you have some Zantac and antacid tablets (magnesium or aluminium based)?
they are not as strong as PPI, but they are fast-acting, I like to use them at night when I am waked up by heartburn. The burn usually is gone within half an hour after taking an Zantac.

you would need some natural healer for your esophagus, the best that would work on you is, manuka honey, I couldn't think of anything better for the serious case of yours.

I trust that you are sleeping slanted, and eat nothing within 4hours before you sleep.

good luck
Posted 11/4/2012 3:23 PM (GMT 0)
Hi NoDoubtLove,

The thing about your story that puzzles me is that your surgeon can ignore the "wide-open LES".  It seems to me that this symptoms overwhelms all others in indicating the need for a Nissen surgery.  It just doesn't make sense.

Many of us who have less obvious symptoms have a very hard time convincing a surgeon to move forward with surgery.  However, in my experience here on the forum, those with wide-open LES valves are put at the front of the surgery line and find real relief from their symptoms post-op.

It's a mystery.

Good luck to you!

Denise

Posted 11/4/2012 4:37 PM (GMT 0)
ARM- I thought you might have missed the wide open LES part as I missed it the first time I read it also, LOL.

The manometry does show what pressure is at the LES. This tells them if it is able to open and close normally or not.
They can see a wide open LES with an EGD too. They look at it before they advance through. I have many pictures of mine pre and post op. After my wrap tore apart from the esophagus repair, mine stayed open over a 1/2 inch. They did that EGD to just confirm what the manometry told them. I had zero LES pressure.
The manometry is also how they know how far down to put the wired PH probe. They can see the tightness of the LES and the tube has measurements on it so they know how far down it is.

Great discussion here all!

Take care,
Bill devil
Posted 11/5/2012 12:04 AM (GMT 0)
Sorry I've been away a few days. I'll try to answer everything ;)

They saw the wide open LES during the endoscopy, the dr who did it stated that it is a pretty serious situation, yet still recommended PrevAcid, he said for the rest of my life :/ I changed dr's to this new doctor (the convo above). They gave me a picture of the LES too, it's wide open - I didn't know what to look for so I googled normal ones and mine is totally different than "normal".

I haven't seen a surgeon yet, I see the LINX surgeon on November 19th (can't get here fast enough!). This current doctor I feel isn't caring. I understand he has to run lots of tests, rule other things out but maybe if he would tell me a little more about his plans. To me, it seems like he either doesn't fully understand this or just doesn't care.

I know the hernia is "small". That's all I know. I did get my records and tried reading over everything. To me it seems logical that if the LES isn't closing how it should be and there is a hernia there, of course acid will come up. So fix that.

I took the Dexliant (60mg) on friday for the first time. I will NEVER take that again. After about 2 hours my chest started feeling really tight, my heart was racing, I had a horrible migrane, awful awful stomach pain (like the worse cramps ever), heartburn and diarrhea, also started having muscle spams and twitching. That feeling was awful. I thought I was going to pass out! I went back to the PrevAcid as of Saturday. I have to tell the doctor and see what the next step is.

I do have my headboard raised. If I don't eat tortilla chips or crackers before bed I get awful indigestion all night long. Actually, if I don't eat in general after about 3 hours I get really bad indigestion and burning.

I feel like this is just a vicious cycle and I want it to stop. I'm eating all the right foods. I have been trying to throw in protein bars because I just keep losing weight.

Hopefully I answered everything. My brain feels scattered, I swear these PPI's make me feel dumb and unfocused.
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