Just got my pH probe results, bringing more questions than answers

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DontStealMyBacon
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Date Joined Jan 2013
Total Posts : 186
   Posted 4/18/2013 10:56 AM (GMT -6)   
A little while ago I had my second pH probe done, and I was told the results would be back in 7 to 10 days. I finally heard back yesterday, four weeks after the test. My doctor said that it took longer because they ended up bringing the entire department together to look at my results. The test showed that during the 24 hour period, I had 156 episodes of reflux during the day and 0 at night. All of the doctors who looked at this are extremely confused, and so am I. The current theory that I have been told is that they think that when I think I'm swallowing, I'm actually sending acid up my throat and not down. This is entirely a theory that will continue to be tested, but this is very weird. I have also known that I have GERD and LPR, so I experience heartburn and swallowing/coughing issues.

Nothing about my symptoms explains how I could have no reflux at night. The biggest symptom I describe is exercise induced reflux, which you can read about if you read my older posts. Basically, when I do any sort of strenuous activity, acid goes straight up my throat and chokes and burns me. As a result I have basically become inactive and have gained a lot of weight. How could this relate to what I just found out? The only possible correlation I can think of is that when I breath harder for exercise, I swallow more and get more acid up my throat?

In general I am just confused and would like to hear what other people have to say.
Right Temporal Lobectomy 4/5/12

Diagnosed with GERD, Eosinophilic Esophagitis, and Epilepsy.
Studying biomedical engineering to research a better fix to at least one of them.

mudmagnetmum
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Date Joined Apr 2011
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   Posted 4/18/2013 12:38 PM (GMT -6)   
Did you lie down at all during the day? If you had reflux whilst lying down daytime but not nighttime then that would point to a simple volume thing - an empty tummy overnight has less to send back up.

Another thought is whether it could be related to blood sugar or insulin levels, both of which are different when fasting of course.

Have you ever had barium, lying and standing? Is it possible you have some strange alignment of hernia or valve that means it's closed when you're lying down?

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

DontStealMyBacon
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Date Joined Jan 2013
Total Posts : 186
   Posted 4/18/2013 5:02 PM (GMT -6)   
Yes I had a barium swallow test right before the pH probe and endoscopy and I do indeed have a small hiatel hernia. The endoscopy and pH probe were on the same day, and the endoscopy results said that my esophagus looks bad but I do not have eosinophilic esophagitis anymore. After the operation the doctor also said something about a white fungus-like substance, as a side effect from taking PPIs for a long time (4 years), that "washed off" during the operation. I have no idea what that means, but it wasn't even mentioned in the report so I assume that it's not a big deal now.

No I do not think I did lie all the down during the day. The part that makes it confusing isn't that it doesn't get worse or is unaffected by lying down. The confusing part is that lying down makes it actually go away, so upright I have a lot of reflux but lying down I have none.
Right Temporal Lobectomy 4/5/12

Diagnosed with GERD, Eosinophilic Esophagitis, and Epilepsy.
Studying biomedical engineering to research a better fix to at least one of them.

88keys
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Date Joined Jan 2012
Total Posts : 19
   Posted 4/18/2013 8:25 PM (GMT -6)   
I too have no problems lying down at night, only during the day. No one has explained that one to me. In fact I gave up the raised head of the bed and have gone back to sleeping normally without issue. I haven't had all the tests though, so I don't have any data to support my experiences.

DOGGBONES
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   Posted 4/19/2013 8:30 AM (GMT -6)   
Bacon,
Wow, 156 refluxes in a day! Maybe there was a mistake in the testing, if not perphaps surgery is in order.

DontStealMyBacon
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Date Joined Jan 2013
Total Posts : 186
   Posted 4/19/2013 12:26 PM (GMT -6)   
Dogbones, no there was no mistake, I definitely felt that many instances of reflux. The worst part is that during the week before it, the rebound made me feel a lot worse than how I felt during the test.

I have been pushing for surgery for a fair while, but believe it or not it has been hard to actually talk to any of the doctors I've seen, mostly because I was diagnosed when I was 14. 4 years later I am still going through most of the same procedures I've been going through, but ideally now theyre pre-op tests.
Right Temporal Lobectomy 4/5/12

Diagnosed with GERD, Eosinophilic Esophagitis, and Epilepsy.
Studying biomedical engineering to research a better fix to at least one of them.

Willovercome
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Date Joined Mar 2013
Total Posts : 105
   Posted 4/19/2013 12:41 PM (GMT -6)   
Well, i have never heard anyone who had this test that resolved anything.
Either
1. you have no problem with acid. In fact, not enough acid.
what? But it hurts!!!
2. You have acid stomach.
Oh that's why. The Same drugs as before.

And then, it seems no doctor can actually explain WHY you have not enough acid or too much acid. they don't really know what is going on with you anyway.
But it's ok FOR THEM THOUGH NOT FOR YOU, to have you test done because They can prescribe you ppis anytime in any case. The prescription is practically in their pocket already when you walk in. Lol

That's why i am not going to take this test. No, thanks.

88keys
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Date Joined Jan 2012
Total Posts : 19
   Posted 4/19/2013 12:58 PM (GMT -6)   
Willovercome said...
Well, i have never heard anyone who had this test that resolved anything.
Either
1. you have no problem with acid. In fact, not enough acid.
what? But it hurts!!!
2. You have acid stomach.
Oh that's why. The Same drugs as before.

And then, it seems no doctor can actually explain WHY you have not enough acid or too much acid. they don't really know what is going on with you anyway.
But it's ok FOR THEM THOUGH NOT FOR YOU, to have you test done because They can prescribe you ppis anytime in any case. The prescription is practically in their pocket already when you walk in. Lol

That's why i am not going to take this test. No, thanks.


Yes, the prescription is in their pocket the minute you walk in the door! My one and only visit with a GI doctor, was a blunt and honest one on his part at least. He told me I could take test XYandZ and the result would still be the same, prescribe PPI on their part. So I didn't spend any money on any testing except the endoscopy he recommended. That was a good test as I had an ulcer and didn't know it. I actually do take Aciphex at the lowest possible dose and it has helped me greatly. But I don't truly feel they have a clue what's really wrong with me, nor do I feel the need to have documentation through expensive unpleasant tests. I'm sure there's many that would probably think I was crazy not to explore this more, but I've found my own ways to cope and live on without the constant trips to a doctor (mainly diet changes and gluten free helped). I had a really hard first year with GERD, but have now adapted to the "new me". I really don't want a doctor rocking the boat experimenting with solutions to my problem, where there may be none.

DontStealMyBacon
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Total Posts : 186
   Posted 4/19/2013 4:20 PM (GMT -6)   
Will, I do not think you have a great understanding of my case or what most people are going through. I did not have this test done to get a prescription. I have been diagnosed with GERD for more than 4 years now, so I have had this test before. As a matter of fact, the first time I took it, it had nothing to do with getting the prescription.

Do not try to treat me like the average reflux patient. I am not someone who has just figured out I have reflux, nor someone who does not know what to try. I have seen and heard the list of diet and lifestyle changes so many times, and I have tried every single item on that list so many times, but my reflux is not cured by diet changes or medications. I have been dealing with gastroesophageal reflux disease, laryngopharyngeal reflux disease, and eosinophilic esophagitis, so please don't treat me like I do not know anything about relux. Sorry if I sound a little angry, but I have been reintroduced to reflux so many times that it just makes me angry when someone I talk to or even a doctor talks down to me as if I don't know the basics.

Also, it is not true that I have no problem with acid. For one, the test results showed 156 instances of reflux, meaning thats how many times it actually happened and not just how many times I pressed the button. Second, I had been suspicious that maybe my pains weren't caused by acid, but when I was off PPIs for the two weeks before the tests, I realized just how much the PPIs help while I am them. Part of the pain off of them was from rebound, but after the first week when the rebound died off, I still had the large amount of acid incidents found on the probe. Please don't try to argue that I do not have acid related reflux.
Right Temporal Lobectomy 4/5/12

Diagnosed with GERD, Eosinophilic Esophagitis, and Epilepsy.
Studying biomedical engineering to research a better fix to at least one of them.

mudmagnetmum
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Date Joined Apr 2011
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   Posted 4/19/2013 4:40 PM (GMT -6)   
DSMB, have they discussed surgery with you? Surely you don't have to have reflux day and night to be eligible for surgery? If you had bad reflux at night but not by day would they not be considering surgery? of course they need to be sure of not making things worse, but I just wondered if it's been raised.

Will, the tests, pH monitoring and manometry, are part of trying to understand the symptoms and are part of the work up for surgery. They provide the surgeon with crucial information that they use when they create the wrap and, as I understand it, adjust the fitting of the wrap to the individual. If you're wanting to avoid surgery, then you can avoid the tests to some extent, but if drugs and lifestyle changes and special diets aren't helping, or if you're just worn out by the effort of sustaining all that (as I am), then the tests can be the passport to a surgical solution.

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

DontStealMyBacon
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Date Joined Jan 2013
Total Posts : 186
   Posted 4/19/2013 5:14 PM (GMT -6)   
Over the past couple years, the primary focus of the doctors I have seen has been to take care of my esophagitis. Now that it has been two years since the esophagitis has been cured, I want to push the idea of surgery. For the most part, it has been hard to express my point of view to doctors as up until this year I have been a teenager, and doctors don't exactly take input from children and teenagers.

As of the past two months, I have been trying to get the pre-op tests I need, and I have gotten the barium swallow and redone a second pH probe and sixth endoscopy. Now that all the results are back, my doctor is not ready to recommend surgery because they feel they do nit properly understand my esophagus, and that she wants me to have a manometry test.
Right Temporal Lobectomy 4/5/12

Diagnosed with GERD, Eosinophilic Esophagitis, and Epilepsy.
Studying biomedical engineering to research a better fix to at least one of them.

inpinkagony
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Date Joined Mar 2013
Total Posts : 274
   Posted 4/19/2013 6:11 PM (GMT -6)   
Oh wow you really have been going through it, i can feel your frustration we might not have the same symptoms nor we may be the same but I can empathize with you about the confusion part and the part about looking for answers but can't seem to get any, I really do wish you well and I am glad you beat at least one of your symptoms such as the esophagitis, hearing that part kind of gave me hope on preventing those from coming how did you beat it by the way? and I really hope you do get the answers you seek because let me tell you its not fun going from one doc to next walking out more confused then ever that's the same situation I been in the past 7 months leading me to other problems such as anxiety.

Please hang in there and I am there for you if you need vent about frustration. :) sometimes not everything works out for everyone :(

Post Edited (inpinkagony) : 4/19/2013 5:14:19 PM (GMT-6)


Willovercome
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Total Posts : 105
   Posted 4/19/2013 7:40 PM (GMT -6)   
don't & mud,
Please, there must have been misunderstanding! guys!

I have had gerd myself for half an year(compared to you i am nothing it seems) and I am almost suicidal that it doesn't seem to improve no matter what i do. Why couldn't I understand you? There is no 'average gerd patient' by the way, I believe. All here are suffering real, long term or short term, with various symptoms(plus side effects of the ppi). I understand THAT.

I am sorry if i sounded like... what.. i don't understand... i was just sympathizing with your frustration. I meant, how you must have been still disappointed and worried after your test when you must have some hope when you had it done.

Hope is killing me sometimes. Either you do have hope and disappointed or you don't have it at all.

I was upset with 'doctors', how they have not much to offer but ppi. Who likes to have ppi with all its side effects? you HAVE To take it. That is the problem.
Who said you don't have a acid problem? Where in my post? 'you' is general you, like 'you never say never', and the concept was what 'doctors' would do no matter how the result comes out. NOT you.

about the surgery, I am sorry they don't think you are a good candidate but maybe it means you can fix it without having to go for a surgery. I have seen some case that failed to fix the problem anyway. Look on the bright side.

One thing I can tell you is, a study shows, after you stop ppi you will have rebound up to almost half year. So I go on, gritting my teeth one more day, hoping perhaps after 4 months later(it's been 1 1/2 months since i had to stop ppi for its side effect. I am on zantac only) my rebound will be over.

Come on guys! Who would think anyone would LIKE TO take ppi?
Forgive me if I had sounded cynical. I am cynical i guess. Not toward you, though. Ever.
Toward the whole medical world!
I am just another frustrated soul.

Post Edited (Willovercome) : 4/19/2013 8:39:08 PM (GMT-6)


DontStealMyBacon
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Date Joined Jan 2013
Total Posts : 186
   Posted 4/19/2013 9:26 PM (GMT -6)   
Willovercome said...
don't & mud,

I was upset with 'doctors', how they have not much to offer but ppi. Who likes to have ppi with all its side effects? you HAVE To take it. That is the problem.
Who said you don't have a acid problem? Where in my post? 'you' is general you, like 'you never say never', and the concept was what 'doctors' would do no matter how the result comes out. NOT you.




Ah, that would be where I completely misunderstood what you meant in your last post. rolleyes

I understand what you mean now. I am just extremely tired of dealing with reflux and the amount of trouble I face just trying to climb the 3 staircases to my room. I am angry about reflux, not angry at you, and this is just where I express it.

The biggest challenge I have now is to figure out how to convince my doctor that I need to move towards surgery as soon as possible.
Right Temporal Lobectomy 4/5/12

Diagnosed with GERD, Eosinophilic Esophagitis, and Epilepsy.
Studying biomedical engineering to research a better fix to at least one of them.

mudmagnetmum
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Date Joined Apr 2011
Total Posts : 1604
   Posted 4/20/2013 7:23 AM (GMT -6)   
We're all in together that's for sure. I've been at it for 3 years now. I had an earlier run in with GERD in 2007 that went away with DGL and I had no rebound getting off Nexium back then either. Needless to say, I was gutted when it came back 3 years later and nothing at all helped. I have something of a phobia of gastroscopy following a bad experience and every time I went near the hospital they wouldn't talk to me without repeating the scope, so I stayed away as much as I could!

Some people make great progress without surgery, some learn to manage, some go down the surgical route as fast as they can.

One thing I have learnt, or observed, is that it's a long journey. Even if you're a perfect candidate for surgery, it still takes quite some time to get to the point where that seems to be the best way forward.

And you're right, no one really wants the meds that much. We use them because we need them. Because life is worse without them.

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

TheSiXness
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Date Joined May 2012
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   Posted 4/20/2013 12:24 PM (GMT -6)   
shoot, I know with my insurance you can go right to the source. I've scheduled meetings with surgeons before without recommendations from doctors before. If you indeed are refluxing that much, I think you'll be able to convince a surgeon haha. Not sure why you main doctors taking so long in making a decision.
-TheSixness

DontStealMyBacon
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Date Joined Jan 2013
Total Posts : 186
   Posted 4/20/2013 2:10 PM (GMT -6)   
TheSixness, I dont understand how some people can get that and yet I have been practically screaming it to my doctors for the last 4 years.

inpinkagony, If you really like to read, this is a post I wrote recently as a matter of venting. I was hoping to get responses, but just about all I got was two people talking to each other, off topic. You dont have to post on it, but this is more about me: www.healingwell.com/community/default.aspx?f=45&m=2683374
Needless to say, I was doing my best to summarize, and its still that long.

Right now, the biggest things killing me aren't the heartburn. The pains I can deal with, not because it's not much pain but because I can get used to it over time. As I was informed by my dentist last year, all of the enamel on my teeth has been melted away by acid, and now my teeth are getting worse and worse. Today they are killing me and I have no idea what to do about them today or in the long run. I also love to play trombone, and I play in three different bands right now. As my throat has gotten worse, so has my ability to play trombone. At this point, I can still play most of the songs I could play before, but I have no sound quality. When my directors figure out just how bad I sound alone, I will probably get kicked out of at least one of them.
Right Temporal Lobectomy 4/5/12

Diagnosed with GERD, Eosinophilic Esophagitis, and Epilepsy.
Studying biomedical engineering to research a better fix to at least one of them.

mudmagnetmum
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Date Joined Apr 2011
Total Posts : 1604
   Posted 4/21/2013 3:47 AM (GMT -6)   
DSMB, Have you ever tried antihistamine or a combination of antihistamine and Zantac to address any allergic element?

If acid is hitting your teeth I can't imagine why surgery wouldn't be considered!

MMM
GERD (3 years and counting)
Lifelong stuff: Food allergies/intolerance, eczema, asthma

OHSOBAD
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Date Joined Apr 2013
Total Posts : 87
   Posted 4/21/2013 8:40 PM (GMT -6)   
DSMB - Have you considered changing doctors? When the doctors are no longer listening to you it could be a better choice. I went through 4 GI experts before I got an ER doctor to refer me to Johns Hopkins. Of course there is a lot of re-testing due to this but, at least now there is a plan of action to help alleviate my GERD related esophageal spasms (jackhammer esphagus). It still took 4 months but surgery is scheduled and I can't wait. Heres hoping it works as it it kinda new. Anyway good luck to you and become a really loud squeaky wheel if you need to. Doctors are supposed to help their patients but again, it isn't called the "practice" of medicine for nothing. Take care.

DontStealMyBacon
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Date Joined Jan 2013
Total Posts : 186
   Posted 4/22/2013 2:11 AM (GMT -6)   
Have I ever considered changing doctors? Ha. That's a funny one.

I'm going to try something new. Instead of posting small posts, I'm going to try to make one post that explains everything. I've been trying not to post too much information, but when I don't post enough there are a lot of questions that I can end up answering, like what I have and haven't tried. Excuse me if I sound extremely angry, that's just because of everything that has happened, not because of anyone on this page.


I started out visiting an ENT doctor about this constant itch in my throat. At the time I was 14, but for as long as I can remember, this itch has always been there. I literally cannot remember a time that I have not had it. It's always there either as a need to cough, or just clear my throat, but I have to swallow or cough just about every 10 seconds. The reason I was finally seeing a doctor about it was because it was preventing me from be physically active. I used to play soccer, and every time I tried to run I had this thing in my throat stop me, telling me I have to stop running because I'm choking. No matter what physical activity I tried doing, this choking feeling always stopped me, whether it was running or swimming or even just trying to use a rowing machine.

I explained this constant cough and choking feeling to the first ENT, and her response was that she had no idea what it could be because it wasn't something she recognized in her department. She recommended that the breathing problem I had could be asthma, which I knew I didn't have, and that I should see a GI. After explaining the same details to the GI, and he too suggested that the breathing problem could be asthma. He asked a few more questions and ordered an endoscopy. The endoscopy ended up showing a couple terrible pictures of my esophagus and what was thought to be barrets, but they were not completely sure.

He diagnosed me with GERD and gave me a prescription for heartburn. He also told me all of the common triggers of reflux and lifestyle changes that I should consider making. I elevated my bed and learned to avoid certain foods, etc. A while later, his office contacted me again and said that they had reconsidered my first endoscopy and diagnosed me with eosinophilic esophagitis and not barrets. After that he recommended me to several other doctors, including moving me to a new pediatric specialist for the esophagitis. He recommended pediatric specialists because of the face that I was still growing at age 14.

After I moved to that new hospital, I routinely saw one specialist for GERD, one specialist for EE (which ended up being more like a team of specialists), and a bunch of other doctors that I got recommended to as different things came up. The first thing the GERD doctor did was change my prescription from one PPI to another and order another endoscopy just because the first one wasn't from her hospital. My EE specialist ordered an allergy test and prescribed two inhaled steroids in addition to the PPI I was taking.

The allergy test was exciting because the nurse ended up needing twice as much area on my arms as she thought she would need. Instead of a short amount of each arm, she used the front and back of both my arms, and every single thing came up with some amount of allergic response. Before the test, I had been avoiding dairy products, but nothing else. I had peanuts almost on a daily basis with no allergic reactions, but the test said I was allergic. Corn, beans, peas, shrimp, rice, nuts, milk, pollen, and cats all came up positive for allergies. I asked both the allergist and the EE specialist how much I should avoid them, and they both said to avoid all of them at all costs, even though I had never had any problems other than the esophagitis. I was told to edit my diet to avoid these foods as best as I could and then to schedule a follow up endoscopy 4 months later.

Meanwhile the GERD specialist decided that it would be wise to move forward on preventing the reflux during the months of editing my diet. The first thing she said is that I probably have asthma, and she recommended that I see a pulmonologist and another ENT.

The appointment with the pulmonologist was brief. He didn't think I had asthma from the start. He ran one test that proved I didn't have asthma and was out of information. He canceled my nasonex prescription that I got from the allergist and sent me back to the GI. The ENT appointment was just as brief, but less productive.

After it had been a couple months, I had the first follow up endoscopy. The results said that my esophagus was getting a lot worse, and I was feeling worse. The EE specialist decided to keep me on the inhaled steroids and take all foods with milk and soy ingredients out of my diet (because I had been avoiding milk but not all foods with milk ingredients). I was told to make these diet changes and then schedule another follow up endoscopy 4 months later.

Going back to the GERD specialist, I reported that my EE was getting worse and that the ENT and pulmonologist had nothing valuable to say. She still wanted to say that the breathing problem was caused by something else other than GERD, but she never did bring it back up. She just ignored it, and focused on controlling the GERD as a whole. She ordered a pH probe and recommended that I see one more doctor that I never did actually get to see for some reason.

On the day that I had the pH probe, I decided to stay at home so that I wouldn't have to worry about a bunch of high schoolers annoying me and remembering it for the rest of my time there. Because I stayed at home, I had a little bit of activity when I decided to go running for a few minutes and the rest was all sitting in my house. As a result I had a day with less heartburn than usual. The results showed that I had moderate reflux, which I knew wasn't true.

The next follow up endoscopy went by and the results again said my esophagus was worse. This time the EE specialist took away all foods with gluten and egg ingredients from my diet. I waited several months, had another endoscopy to track this, and then sure enough the results showed my esophagus was better. I woke up and left the hospital to the words "you're cured", but I felt worse than I did when I started the treatment. Multiple years of jumping around from doctor to doctor and editing my diet down to practically only fruit and meat and my esophagitis was cured. If only that made me feel better.

The EE specialist cancelled my steroid prescription and scheduled another endoscopy to see if the diet or the steroids were helping me. Months later the results showed that my esophagitis was still gone. I asked my doctor whether I should stay off all the foods that trigger esophagitis if it doesn't make me feel any better, and she said her honest opinion was that I needed to avoid the EE at all costs.

By this point more than two years had gone by. I reported back to my GERD specialist to say that my EE was cured and that I felt worse than I did two years ago. The only answer I got was that she doesn't recommend surgeries for pediatric patients (I was now 16) and that there was nothing else she could do. She had no doctors to recommend, no tests to order, nothing at all. She just said she was done helping me. A couple of months later, she stopped being a doctor to take a job with the FDA and I lost contact with her entirely.

After I lost contact with both specialists, I basically stopped seeing doctors for reflux for two years. During this time, and throughout my entire life, I was dealing with epilepsy. Because this thread isn't about epilepsy, I'll keep it down to a few sentences. I used to have seizures averaging about once a month, give or take. Right when my need to see reflux doctors faded away, my seizures got worse, eventually getting down to three to five a week. I only saw two doctors for epilepsy, which was nicer than having to see all the different ones I had seen. As the seizures got worse, I transitioned into different medications that all either didn't work or had unbearable side effects. Right when everything was at its worst, I was having a lot of seizures and on a medication that made me suicidal, on top of everything else. That transitioned me into seeing the second doctor more, and eventually having brain surgery at johns hopkins. The surgery was one year ago and successfully stopped all of my seizures.

After I had the surgery, I started seeing new doctors about what might be affecting my throat. Somewhere down the line I've left out a few, but by this point I had seen some 50+ doctors and was not too pleased with what each doctor had to offer and how much to expect out of any single appointment. I had a few appointments with a vocal chord specialist that confirmed that I do not have a vocal cord disorder, by my vocal cords were severely burnt by acid. I also had routine appointments with my dentist who said that all the enamel had been melted off of my teeth, and that he believed acid was the cause.

Three months ago I started seeing a new GI at Johns Hopkins. I explained just about everything that has happened, and she took notes for about half of the time I explained it. After that she just nodded, even though I think she had stopped listening. I tried to stress that I had a major problem with exercise, to the point that climbing a staircase sent acid up my throat, but she, too, ignored that detail. I also tried to stress that I want to consider the surgery, but I don't think she is as eager as I am. She ordered a barium swallow and a repeat of the pH probe and endoscopy that I hadn't had for over two years. The barium swallow showed that I have a small hiatel hernia. The endoscopy showed that I do not have esophagitis but that my esophagus is looking quite bad. The pH probe showed that I had 156 instances of reflux during the day, but zero at night. I had the 6th endoscopy and the 2nd pH probe on the same day, and I was told the results would take 7 to 10 days to get back, but it ended up taking a whole month. The entire johns hopkins GI department ended up looking at my pH probe results, but none of them could figure out how I could possibly have 156 episodes during the day and zero at night.

I heard back from my doctor last week and she told me the results and that she is not willing to move forward towards surgery because they do not feel they have a good understanding of my esophagus. She ordered a manometry and that's where I am right now.

Sorry if it feels like I am dumping all of this onto people, but I keep getting responses that give suggestions to thing I have already tried and been through, so here's a bigger picture of the story.
Right Temporal Lobectomy 4/5/12

Diagnosed with GERD, Eosinophilic Esophagitis, and Epilepsy.
Studying biomedical engineering to research a better fix to at least one of them.

ericapeace2000
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Date Joined Mar 2012
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   Posted 4/22/2013 11:33 AM (GMT -6)   
Wow, you have been through a lot. My heart goes out to you, having to deal with health issues from 14. I am just thinking outside the box here but have you tried accupuncture?
GERD Moderator; Diagnosed GERD, no other medical conditions (this one is enough) ; Gluten free since 2012; low dairy since 2012

DOGGBONES
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   Posted 4/22/2013 2:12 PM (GMT -6)   
Bacon,
With everything you've been through, you have the right to be angry. So much at such a young age, how you have been able to keep yourself together is amazing!
 
I'm not sure what advice to offer that you haven't already tried? So I offer my support and understanding, I wish I could do more.
 
Just for future ref., barretts should never be confirmed by visual, there should be a biopsy to look for goblet cells.

DontStealMyBacon
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Date Joined Jan 2013
Total Posts : 186
   Posted 4/22/2013 3:37 PM (GMT -6)   
Oh, I did totally forget about that. I did acupuncture designed for reflux for a couple months, but it wasn't too successful. I did feel better after doing it once a week for a while, but not in terms of reflux. I had forgotten I even tried that.

In terms of other things I have tried, I have done just about everything possible to try to reduce the amount of exercise induced reflux I get, but nothing has any effect. I have tried: avoiding spicy foods before exercising, avoiding all foods for 5 hours before exercising, fasting for 36 hours and then exercising. No matter what, I still can't run for more than a few steps without feeling like I'm dying.

I used to speed skate because I love the feeling of the cold ice rink when my throat makes me feel overheated. One day when I was testing myself I literally pushed through the choking feeling so hard that I burnt my throat and lost my voice for three whole days. Since then I have basically become entirely inactive and have gained quite a few pounds.

When I was on the anti-epileptic medication that made me suicidal, I managed to gain some 30 pounds to get up to 250. Since then I have gotten better, but am still stuck at 240, which doesn't help me feel any better.

Not a single doctor believes me when I say that I get acid in my mouth every time I climb a staircase, but it's true. The recent pH probe even proved it, because I went speed skating for two hours the in the morning before I took it out. Every doctor I've ever seen either wants to call it asthma or refer me to a different department. This month is the first time I've ever heard a doctor say "I don't know." Usually I get something similar to it, but in different words.

In the long term, it's not the chance of getting barrets or the esophagitis getting worse that worries me. It's the pains I'm in now and the exercise induced reflux I get that no doctor or website will acknowledge or treat.


Now I am 18 and in college studying biomedical engineering to research some sort of fix to reflux. I try to use all of this experience as motivation to get through college, and whatever other years of school I will need.
Right Temporal Lobectomy 4/5/12

Diagnosed with GERD, Eosinophilic Esophagitis, and Epilepsy.
Studying biomedical engineering to research a better fix to at least one of them.

sweetkitten
New Member


Date Joined Jul 2013
Total Posts : 2
   Posted 7/27/2013 4:23 AM (GMT -6)   
My situation is very simular to yours. I see doctors at USC who worked as a team and proved I had not breating problems even my 10yr long cough was because of my esophogus problems. Going up stairs is hard for me because of me diabilities but the walks would cause me to burp up acid. The dr is going to inject botox through out my esohagus and where it meets my stomach. This hopefuly will alow me to at least eat soft foods and stop the acid from comung up all the time. It is only temporary but will give the dr the map to where with surgery they can fix the problem. I wish you well and maybe your dr will try the botox injections. I do it on August 6 and will let you know if it helps. I've been dealing with this for so long now that I'm on a liquid diet and at times that is hard too.

GC1pink
Veteran Member


Date Joined Nov 2012
Total Posts : 532
   Posted 7/27/2013 8:29 AM (GMT -6)   
Bacon,

Your story is terrible to hear - you have been through so much in life already. May I enquire about the hiatal hernia - do you reflux when you eat or swallow only or is it at other times as well? When they did the barium swallow did they do a double swallow test? - In some people with a HH, an amount of acid is trapped in a hernia with one swallow, and then is ejected up the oesophagus with the next - this is called a reverse movement. Could it be possible that acid is getting trapped in your hernia and then with the swallowing action either be it with drink, food or saliva, you are then getting a reverse movement? Then at night the hernia could slide down causing no reflux as there is no food to stimulate the acid?
Just a thought.
I do hope that you get the answers soon, and good luck with your studying - I admire your attitude!
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