Well, for those of you who remember me...I'm back

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Chipsygrl
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Date Joined Feb 2009
Total Posts : 29
   Posted 4/12/2010 3:38 PM (GMT -6)   
Hey
I had my endoscopy done today and they found a hiatal hernia (excuse the typing still loopy from versed). I also had inflamation in my stomach. I havent had any luck yet with the diagnosis of Crohns but am in another group getting great support.
I have to now wait for my biopsy results in 7-10 days and then the subject of PH testing came up. No idea what that is yet as they got me out asap to have the next person in. (They are doing 34 endoscopies/colonoscopies today).
Anyhow, I will do a search on PH testing - anyone want to share there expereince would be appreciated.
Im getting nervous about the fundo wrap as the tests are starting to move along. Just want it dealt with.
Again, sorry about the grammer and spelling mistakes, still a little loopy.
Test wasnt bad at all but I do remember most of it.
Cheers smilewinkgrin

dencha
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Date Joined Feb 2009
Total Posts : 7188
   Posted 4/12/2010 4:09 PM (GMT -6)   
Hi Chipsy,
Glad to hear you're moving ahead with the diagnostic process. The PH monitor is one of the tests required to see how bad your reflux is. If they didn't place a monitor during your endoscopy, they'll be using a traditional wired monitor. They take a very thin wire/probe and put it through your nose and down your throat.

Once they get it in (don't worry...it's not that bad) they position it according measurements made during your endoscopy (I assume they did that). Once it's in the right location they tape it to keep it in place. It's connected to a little electronic box that that you wear around. The box has buttons that you push when you're having reflux, whenever you eat or drink, when you're laying down, etc. When time's up (24hours) you'll go back and get it taken out. They'll download the information onto a computer.

If you're experience is anything like mine, you won't get the results for a long time, which is frustrating.
The test is annoying, but it's not bad.
The toughest part is that you have to be off PPI's for 1 week, and can use Zantac until 48 hours before the test. After that you can use Maalox/Tums, etc. up to one day before the test.

Up until the day of the test you can relieve Maalox,etc. any time during your prep until 24hrs before your test.

You won't be able to use anything at all during the test which is tough, but you'll just have to "suck it up" and get through it.
I found water helped with I had heartburn during the test. I've heard milk is helpful, too. It's very individual.

As far as biopsies taken at your endoscopy...that's very routine.
Don't worry about the surgical option. You may not need it, and if you do, we'll help you through the whole process. We've "been there, done that"!
Take care and rest up!
Denise

Chipsygrl
Regular Member


Date Joined Feb 2009
Total Posts : 29
   Posted 4/12/2010 4:20 PM (GMT -6)   
thanks Denise for getting back to me so quickly.
I have a few more questions about the Ph test. So does the test just monitor acid and nothing else?? You mention that you wont be able to use anything at all during the test... are you referring to medication?

Isnt is a little strange walking around with tubes down your nose in public? I have had tubes down my nose before and it was very unpleasant but am willing to do it to get this fixed. I do remember fighting them and yanked it out the first time they put it in (I was a child at the time). My doctor has already mentioned surgery because the drugs aren't working and he is worried about Barretts esophogus and the amount of PPI's I am taking and the duration I have taken them. I have had GERD for a long time now.
I think he said I had a small hernia (but cant be sure as I was loopy). I didnt find the endoscopy bad at all and I remember most of it.

Does the PH test record what you eat or just strictly the PH level? It doesnt sound so bad aside from the insertion of the tube.

dencha
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Date Joined Feb 2009
Total Posts : 7188
   Posted 4/12/2010 5:48 PM (GMT -6)   
Hi Chipsy,
Yes, you're not allowed GERD medication during the test. (Also, as I described, from a week before the test you can't use a PPI.)

I've had the test twice, and I took the day off from work because it is strange to be seen with a wire sticking out of your nose. I just didn't feel comfortable.

The test measures only the PH levels over 24 hours. If you're like me, you have variable GERD symptoms, so you'll have to hope you have the test when things are bad, so they can see what's going on.

I had the surgery in February 2009. My most serious symptom pre-surgery, was out of control asthma caused by reflux. It's not a perfect fix, as there will always be differences in your GI tract. I am very glad I had the surgery, though. By about two months after the surgery my lungs began to improve, and I'm now much healthier due to the surgery.

I am having some problems with my wrap, and I had a barium swallow to try to figure out what's going on. I'm going back to my GI doc to see what he thinks. That said, I'm still much better than I was pre-surgery, and I didn't find the surgery to be as difficult as I had expected.

I'll do my best to answer any additional questions you might have. I'm sure others will be by to share their experiences and information with you.
Don't worry...you'll do just fine.
Take care,
Denise

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/12/2010 6:52 PM (GMT -6)   
I had the 270 degree wrap done back in December last year.
My ph test was the Bravo. Nothing in your nose... just a small capsule in your esophagus that falls off in five days. I didn't have to go PPI free for my test.

Joy

Chipsygrl
Regular Member


Date Joined Feb 2009
Total Posts : 29
   Posted 4/13/2010 3:09 AM (GMT -6)   
Funny, I was telling my friend who took me to the endoscopy that I am like a kid you take to the doctor and they suddenly feel fine. I wasn't actually feeling fine but it was considerably better than usual. I was wondering about the test and how unpredictable gerd can be. For a long time I had it severe and every day and then all of a sudden without reason it disappeared for a day or two then came back. My luck, they will do the test when it isn't there for those 2 days. They saw a hernia and inflammation so at least they know it isn't in my head.

Hmm..it wasn't mentioned Joy which test they would be doing as I am waiting the results of my biopsies. Joy, how many more tests did they do before surgery?
Thanks for your posts :)

Chipsygrl
Regular Member


Date Joined Feb 2009
Total Posts : 29
   Posted 4/13/2010 3:13 AM (GMT -6)   
Oh Denise,
One other thing, When I referred to medication - I was wondering if you had to stop all medication? I understand you have to stop PPI's but what about medication for other things?
Thanks Denise and Joy

opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 4/13/2010 3:35 AM (GMT -6)   
Chipsygrl-
The only meds I had to stop were the PPIs, but some do the PH study while you are still taking the PPIs. That's up to your doctor. I was still able to take my BP meds and such.
As for tests before surgery, usually they want a manometry, PH study, and possibly a barium swallow test. Some have had to have a stomach emptying test also. I have had the Bravo once and the wired PH study done twice. I also felt weird about going to work with the wire coming out of my nose and called in that day.

Take care,
Bill

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 4/13/2010 6:04 AM (GMT -6)   
Hi Chipsy,
As Bill said, I only had to stop acid reducing meds--not any others. I totally know what you mean about symptoms that can come and go. Some people with wide-open LES valves have no let-up, but those of us with poorly functioning valves can have a variety of symptom severity.

The main thing is this. You know your body. You know what you're feeling. After all is said and done, you need to communicate that to your GI doc. It took me two GI docs and double tests to get to the point that it was decided that something needed to be done. In the meantime, my asthma was so bad and I was on so much steroid medication that I have done damage to my body. Both my family doc and asthma doc were sure that the GERD was causing the problem (I do also have allergy-induced asthma, but that was under control until the GERD started getting so much worse.)

Hang in there. Everyone here will support you through whatever path you take towards recovery.
Take care--glad you're back!
Denise

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/13/2010 5:07 PM (GMT -6)   
I had 3 EGDs, stomach emptying, Bravo, motility test, and barium swallow.

I did not like the motility test at all. :(

Joy

Chipsygrl
Regular Member


Date Joined Feb 2009
Total Posts : 29
   Posted 4/13/2010 7:06 PM (GMT -6)   
My GI doc is great. He has made things happen right from the get-go. It was my family doctor that I had issues with, her intern and another intern at her office. I went in once sincerely thinking I was having a heart attack (which isn't too much of a stretch as I had very low potassium once that I had to be hospitalized and given it via IV.) The intern that I saw advised that I walk to the local Shoppers drug mart to use their blood pressure test when I felt like that and said, "you don't want a heart problem". My doctor just keeps upping my meds and sending me home and her intern said there was nothing I could do - that I needed to stop doing what I was doing to get heartburn. I wasn't doing anything and I had already cut out the food that was aggrivating it. I finally complained loud enough.

I usually have pain every day especially at night very badly and have had for over a year & 1/2 (took a year to get in to GI). He knew right away and also thought after asking me questions that I might also have Crohn's which I am waiting to be tested for. I have complained to my doctor about that for over 5 years. My doctor is a nice person but she is very big on mind-body connection and I find relies too much on that. There is only so much you can do to change your lifestyle and environment. I sleep sitting up...lol (and my bed is already raised).
So, my GI jumped on things right away and so far so good, except it is a LONG wait for the tests. Suddenly the last couple of weeks, the symptoms have decreased significantly, except for at night (has happened before though).

Anyhow, on with the tests and I am just eager to get things fixed to the best of their ability so I can start having some energy and a life again....pain free :)

I will look up the motility test but what about it was the worst? All I know is I have a PH test once the results come back. Why so many tests if they already know I have GERD? Is this one way of determining how to fix it?

Cheers

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/13/2010 9:00 PM (GMT -6)   
The motility test helps the surgeon to determine which surgery is right for you.

I didn't like the tube going down my nose into my stomach. It felt too big and kept making me gag. After they got it position and taped down you had to swallow ten perfect swallows of water. You could only swallow or talk when the doctor told you to. I kept wanting to swallow during the whole thing. Afterwards my blood pressure was so high from the stress that my face was bright red.

What was so bad if they had warned me about the test, what it entailed, and gave me a sedative I might of relaxed more during it. Instead I kinda fought them.

Joy

dencha
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Date Joined Feb 2009
Total Posts : 7188
   Posted 4/14/2010 6:33 AM (GMT -6)   
I don't know if they can sedate you without interfering with the swallowing reflex. This is a dreaded test, but a necessary one. It's definitely not a picnic, but many of us have been through it and survived! Honestly, it's mind over matter. You'll have a good nurse/technician assisting who will provide you with relaxation techniques that will make it easier.
You can do this. It's not that horrible.
Denise

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/14/2010 3:23 PM (GMT -6)   
I know I had a bad time with it, but I was not informed on what it involved. I was just told "they want to do a test on you, show up here at this time, don't eat or drink before hand".

I have an easy gag reflex and a deviated septum, so it was hard for me.

Joy

Alcie
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Date Joined Oct 2009
Total Posts : 5028
   Posted 4/14/2010 11:28 PM (GMT -6)   
Don't worry about the biopsy. If you have celiac or helicobacter it doesn't mean anything about surgery. Most people get a hiatal hernia sometime inlife and never know it, and most don't cause symptoms.

Versed is an amnestic, and muscle relaxant. It does not relieve pain. I want to remember what goes on, have had enough procedures to be afraid of losing control,so I refuse it. They do tell you not to drive, sign anything or make any important decisions after having sedation.

Bravo capsule is normallyplaced without anesthesia or anelgesia. Mine was just pushed down my throat despite my horrible gag reflex. They tried to do it with me sitting up, but I just pushed them away. I was able to barely tolerate the procedure lying down, vomiting all the time. But, as I said, my reflex is the worst imagineable. Even my dentist hates me. Most people tolerate it fine. There isn't much pain unless you have a wide open LES - but that's the acid coming up un-neutralized. I had to do without my acid reducers for 10 days before the procedure, then the two days of the test. I kept reading the meter, and recording the results with times. It kept saying 1.2. Good thing I did! The capsule fell off after 24 hours and they tried to make me do it over!!! It was great to have my own results because they accepted the 24 hour notes. Most capsules take 5 days to a week or more to fall off.

Manometry is the one procedure you can't be sedated for. Anything, the slightest pain killer - there's really no pain - could upset the results of your swallowing test. It's only for a few minutes - normally. Of course, for me, as usual, extra fun. My nose nose passages are so small and bent from multiple breaks that they couldn't get the tube down after 4 tries. Just kept curling up. So, lucky me, I got to have a baby endoscope shoved down my nose, after dilation, and a wire run through that, then the mano tube run over that and the wire pulled out. But they DID get the test done. Good thing too, because of my post-polio status I don't swallow well and needed a partial wrap instead of the full one. Yes, I sat there through the whole thing without sedation or pain meds except for the usual nose numbing. ... crying, but putting up with it because I knew I could die from a twisted stomach stuck up in my chest if I didn't get the operation, and there was no way they would do the op without the testing.

For Bravo and maybe manomtry you should be told to not take most pain meds, all cholesterol meds, and a page list of others. If they don't give you a list, ask about it. some of these things can interfere - supposedly.

If your condition is bad enough to put up with surgery after reading all the posts, then it's bad enough to put up with the tests and not complain. Well, it's fine to be ouching all the time.
Alcie
 
 


Chipsygrl
Regular Member


Date Joined Feb 2009
Total Posts : 29
   Posted 4/15/2010 4:56 AM (GMT -6)   
I have had tubes down my nose before and they had to hold me down. I didn't mean to pull it right back out but it was my reflexes - it was painful the way I did it! That would be my only concern. I have a feeling that the tube will be smaller than the ones they used before. I remember it feeling like it scraped my nose on the way down - unpleasant for sure.
couchtater - that's terrible that they say "just show up" - not knowing what to expect I find, is half the battle. Fear of the unknown!
I don't have any nasel issues, deviated septums, broken noses or overactive gag reflexes, etc., I have been getting nausea in waves lately though which may be Crohn's, but I doubt that will be an issue especially if I am laying down. I don't think I want to be going to school with a tube down my nose though.

Thanks again for the input and information - it has been helpful!

Chipsygrl
Regular Member


Date Joined Feb 2009
Total Posts : 29
   Posted 4/15/2010 4:58 AM (GMT -6)   
Oh, I don't think I have H. polori, I had a blood test and it came back neg., but I understand it isn't always accurate. Celiac disease has also been ruled out.

dencha
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Date Joined Feb 2009
Total Posts : 7188
   Posted 4/15/2010 9:52 AM (GMT -6)   
Hi Chipsy,
You were a child when you pulled it out...that's a totally different issue. As an adult you have stronger impulse control. I had my endoscopy without sedation, and although the doctor told me not to bite, my impulse was to bite down on his hand. However, each time he reminded me, I stopped, and it wasn't a problem at all.
You will do just fine!
Denise

Alcie
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Date Joined Oct 2009
Total Posts : 5028
   Posted 4/15/2010 10:31 AM (GMT -6)   
H pylori is only really tested with the biopsy - the "gold standard." Blood test is only 80% accurate, although if it is + you probably have it bad. It does come in stages. If you never had a problem with severe stomach distress as a child and growing up, it's unlikely you have it, since it's a hereditary disease and sends people to the ER every time they eat a pasta dinner or anything with gluten.

Generally you have a bite block when getting endoscopy. Doc's hand shouldn't be in your mouth. I do all scopes without sedation because I will not risk retrograde amnesia, but I might ask for pain med next colonoscopy, as after fundo I don't want to be straining as hard as I used to. 1 mg Dilaudid IV would do the job, but I'll need Zofran a couple of times for the nausea. I don't want to go home throwing up afterwards!
Alcie
 
 


dencha
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Date Joined Feb 2009
Total Posts : 7188
   Posted 4/15/2010 11:51 AM (GMT -6)   
Alcie,
Apparently the surgeon who did the endoscopy doesn't use a block, because I was able to bite, although I wasn't aware I was doing it. I never hurt him because as soon as he said anything I stopped immediately. I am fine with not having sedation for the endoscopy. It's much better to be fully awake and aware immediately following the procedure.

I do have a little hesitancy if I need it again, because unless I can get total reassurance from my GI doc, I may be psychologically more resistant because I'm afraid he'll damage my wrap.

I wouldn't have much if anything...just a little to take off the edge, maybe. We'll see.

My first GI did my colonsocopy and endoscopy with very little sedation...we talked throughout the colonoscopy.
I'm going to someone else now, so it'll be interesting to see what he is like with the procedure.
Denise

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/15/2010 3:56 PM (GMT -6)   
I was sedated during the Bravo. He did it during my EGD.

Joy

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 4/15/2010 5:35 PM (GMT -6)   
I have been MIA most of the week and just catching up now. :-)



I am wodering what sx you have that makes your physician suspicious that you may have Crohn's ? I maybe missed something in the posts and you already posted it.



Thanks



Kitt

Chipsygrl
Regular Member


Date Joined Feb 2009
Total Posts : 29
   Posted 4/15/2010 5:43 PM (GMT -6)   
I have right side lower abdominal pain most of the time, diareaha, rashes, mouth sores, weight loss, nausea, loss of appetite, right side hip pain, and my brother has it as well (we are not in contact though). I have an MRI on June 8th of the lower bowel.

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 5028
   Posted 4/15/2010 8:53 PM (GMT -6)   
Denise
You can refuse "sedation" and just get a pain reliever. Nothing says they have to give you versed, which does nothing for pain, just an amnestic and muscle relaxant. If you go for Fentanyl though, ask for Zofran to prevent nausea and ask for some pills because Fentanyl takes several hours to wear off. I'll probably ask for 1 mg dilaudid next time only because I don't want to strain and wreck my wrap. I had 3.5 mg post-op and it stopped my breathing. I'll still need Zofran with that too. I have some pills I carry just in case of nausea and have used them a couple of times for food intolerances.
Alcie
 
 


stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 4/16/2010 5:01 PM (GMT -6)   
Hey there, perhaps your GI physician could start ruling out Crohn's with a Colonoscopy and a SBFT before you would move to an MRI. Biospies are often helpful too and can be obtained during the scope.



You said your brother does not live by you.................Crohn's is not contagious. Hope you get that ruled out as quickly as possible.



Gentle Hugs,



Kitt
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