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Next round of tests: a little rant

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GERD & Acid Reflux
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Posted 7/10/2012 5:57 PM (GMT 0)
Hello:

I got my blood work back, again NORMAL. So far, the chest x ray, ultra sound, stomach emptying test, and blood work has been fine. So I guess the next thing is the PH study and Mamotry Test. Anyway I can mentally prepare for these tests? I see my Dr. July 23 I guess to discuss the tests and then I will have to schedule them. In the meantime I have been doing a bit better. I am on Nexium 40mg now, still on the diet and all the suppliments. Still on Gaviscon at night. Still wondering if this will ever get better than it is. Wondering how the hell this all happened. It is good to know that I am healthy otherwise. I am pretty sure that I either have an broken LES (although all my endoscopies have been only mild esophagitus over a 7 year period) or I have Bile Reflux. Other than that I have no clue what is going on. I do not have the LPR symptoms so I think that can be ruled out. I wonder if I have any nerve damage from the reflux. I hate all this guessing.

Posted 7/10/2012 6:10 PM (GMT 0)
Well the good thing is the pH impedance and manometry tests are the best for getting to the root of the problem, that's what helped me. Even my endoscopies came back just fine. So, I have faith that you will get some answers soon.

These tests aren't nearly as bad as you imagine them beforehand. The anxiety over the tests will surely be worse than the actual tests. The manometry only takes minutes, and the 24 hour test uses a probe so thin that it will only be slightly uncomfortable, and 24 hours will pass very quickly. The most annoying part to me was not the probe in my esophagus, it was the fact I had to carry that computer around my neck/shoulder everywhere. You will do great!
Posted 7/10/2012 7:06 PM (GMT 0)
Thanks. I plan on taking off work that day, whenever it is, because my job requires me to be very focused and talk a lot and I think I may get distracted. If you don't mind, what was the root of your issue? I do not know what else they can do for me minus surgery to fix the LES if that is not working or if it is bile reflux another medication. Joy. I do not like any of those options.
Posted 7/11/2012 11:16 AM (GMT 0)
erica,

Carafate is used for bile reflux. As far as some of your other symptoms with mainly normal test results, I deal with some of the same isuues. I do have a new "theroy", I believe my vagus nerve is either damaged or injuried which can cause alot of GI isuues. It goes back the the root cause of why the les isn't working right (and it's not from to much stomach acid).

I went to see a top ENT at UW Hospital, and all I got was "I can do nothing for you that your GI hasn't already" and "would you like a referral for surgery". However, I did get him to admit that ppi's are bad news long term use.

Posted 7/11/2012 12:52 PM (GMT 0)
I have heard of carafate from this forum, and I may talk to the doctor about it as it can be used for bile reflux and acid reflux. I also feel like there is something going on with the vagus nerve. I can often feel pains through my back, chest pains and they float. How the heck does a vagus berve become damaged? I also think that PPIs long term are not a great option. The fundiplocation surgery also scares me. The TIF seems ok, but I am not sure if insruance would cover that. And I know for sure the insurance would not cover the LINX because it is too new. I feel like I am stuck in a box right now with options that are not appealing. I am sorry, Doggbones, that you have not had much luck either.
Posted 7/11/2012 2:13 PM (GMT 0)
The pH test showed a significant amount of reflux all day and night (can't remember the number of episodes). Taking PPIs did nothing to my relfux but turn it non-acidic, which they label "Non-Erosive Reflux Disease" Might sound minor, but it is just as painful as acid reflux. We tried PPIs, carafate, and a ton of other things without success. The only solution was surgery, so in November of 2011 I had a nissen fundoplication. The surgery was extremely successful, and now I'm back to my old self. While the surgery is a scary thought, I will forever sing the praises of the fundoplication. It saved my life, I had basically given up on living before. Good luck!
Posted 7/11/2012 2:55 PM (GMT 0)
I think the vagus nerve can become damaged by something so simple as a cold. My first symptom of reflux started almost immediately after I had gotten over a very bad cold that would not let up. My PCP acted as if the cold could in no way be related to my other symptoms, but my GI thinks otherwise.
Posted 7/11/2012 4:09 PM (GMT 0)
Im pretty sure I have that non erosive reflux disease thing. I only have mild inflammation but my pain is awful, ecven with lifestyle changes and diet. I do know that the Nissen does have a good success rate, I just worry about the recovery time....how soon could you go back to work?
Posted 7/11/2012 4:25 PM (GMT 0)
The pH test will show if its non-erosive... as there will be reflux, but no acidity.

I see lots of worry over recovery time here, but to me it was never a factor. If the surgery gives you many years of relief, what is a few months of recovery? Its just a drop in the bucket compared to the time you'll enjoy being symptom free, and the recovery goes by very quickly. I was back at work in 3 weeks, eating mostly everything in 4-6, and everything at 8. 2-3 months of recovery is more than worth a life of no symptoms.
Posted 7/11/2012 4:32 PM (GMT 0)
Hi Erica,

I think we're in the same boat. I'm worried about the same things! I have repeat gastroscopy coming up and they keep mentioning pH monitoring. I'm going to struggle so much to come off medication for that and then, whilst having maximum symptoms and nausea, I would have to willingly swallow the tube. I have a big issue with tubes down the throat, so I dread it. I would also stay off work - no way am I walking around in public with a tube out my nose!! I think I would stay home and do loads of housework - I know that sets off my symptoms anyway ;-)

I have the same concerns about surgery, the diet afterwards I think would be very difficult as I already have to be wheat and dairy free as well as catering for 2 small children.

I find Bowecho's comments reassuring about non acid reflux being just as painful - that really makes sense of my symptoms actually!

I also feel a bit trapped and cornered - the only way out is through the awful tests, so part of me wants to just keep putting up with it all!

MMM
Posted 7/11/2012 4:33 PM (GMT 0)
3 weeks isnt bad. 2 would be better lol as you can see I am a workaholic. I am on the GERD diet now and lost a lot of weight (i was maybe 5 pounds overweight so now I am skinny). I worry about losing even more weight if I have to get surgery. How long did you have to stay in the hospital?
Posted 7/11/2012 10:49 PM (GMT 0)
Mmm
I am also off wheat and dairy so I know how u feel. My doctor told me he can do the ph test while im still on medication since I'm experiencing symptoms so strong. I'm not looking forward to it but I am desperate. I should have done this years ago but I was too scared. My symptoms are chest pain, upper stomach pain, minor heartburn feeling and pains through my back. My spasms are minor if at all with the magnesium supplement but I'm in pain still. With a strict diet. I also experience gas and bloating. I think it's amazing I can hold 2 jobs, and have any life at all with all of this.
Posted 7/12/2012 9:53 PM (GMT 0)
Hi

I think it's odd that they ask you to stop medication anyway - aren't they just measuring the acid rebound?!

MMM
Posted 7/12/2012 10:11 PM (GMT 0)
that is true, mmm, they would be measuring the wrong thing. I told my dr. there is no way I can function off my medication cold turkey like that. I have 2 jobs and I cant risk the rebound especially when I have symptoms still while ON medication.
Posted 7/13/2012 3:44 PM (GMT 0)
Are you feeling nausea with the GERD and is it difficult to eat? I had been fine for months and now I am sick again...I did withdraw from Protonix and zantac about 5 months ago and felt very little rebound ...Also, many people say it takes awhile to feel the rebound....Perhaps it won't be too bad...
Posted 7/13/2012 5:41 PM (GMT 0)
I am not typically nauseated, I think I have difficulty eating because I am sick of the diet and am not excited about my food. Certain things are a little difficult to swallow like apple skins but that is not a huge complaint. I manage ok. I wish the chest and stomach pains would stop. They come and go.
Posted 7/13/2012 5:56 PM (GMT 0)
erica,

I am amazed that you are able to hold down 2 jobs and go through all this pain and misery.   You are one tough lady and I do hope your tests tell the whole story and if you need surgery that it can be scheduled soon so you can get on the road to healing.

Thank you for all the wonderful support and posts as you never fail to respond to members in need by sharing your experiences here in the forum.  You are truly an assest to this community as well as many of our other regular members. 

Kindly,

Kitt

Posted 7/13/2012 6:51 PM (GMT 0)
Kitt,
Thank you so much for your kind words. This community has been my number one support through all of this. My family and friends are supportive but they do not know how it feels like everyone on this board. I have learned more here than from my doctor which is amazing. I am a tough gal but there is only so much someone can handle.
Posted 7/14/2012 8:43 PM (GMT 0)
erica,

I do understand exactly how you feel - it is hard to be tough all the time when what you really want is a break and to just feel good. It is sometimes so easy, when we are feeling a bit weaker physically and mentally, to start to “become” our illness.

Chronic illness and injury can rob us of our hopes and dreams – if we let it. My biggest battle is major depressive disorder and somedays I feel that I am losing to this nasty mental health disorder.  For me, I need to look past my depression and anxiety  to see the person  I really am inside.  I am not my disorder I am a person with a mental health dx, GERD, Hypertension, Raynaud's phenomenon and recently added Hyperlipidemia. 

I am fortunate that my GERD seems to be OK using medication but I do suspect that I am about ready for an UGI scope as I have never had one and have been having some stomach discomfort - but whatever I have to do I will get er done !

 

I let the tears out when I am feeling bad and wish I could be " normal" but I know this is my normal. 

You will make it erica but remember we are always here for venting and to offer support and caring as we understand.

Gentle Hugs,

Kitt

Posted 7/15/2012 3:40 AM (GMT 0)
Kitt,
Hang in there as well and good luck with scope. I never thought I would have a health condition in my 20s. Unalaska thought that would start much older. I was pretty naive. I try not to obsess over the reflux but it affects so many areas of my life that it is hard not to. I will not let it get in the way of my goals.
Posted 7/15/2012 5:17 PM (GMT 0)
erica,

Yes you will continue to work towards you goals and remember it is always ok to change your mind and reset goals.

As my GI specialist is extremely busy I may not be scheduled for an UGI scope for at least 6 months.  I would have to have a GI bleed to see her STAT.  idea

You know I am here for you so may your Sunday be peaceful.

Kindly,

Kitt

Posted 7/16/2012 4:02 PM (GMT 0)
6 months is a long time. I am sorry you can not get in sooner. But please at least schedule it!
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