GES 4Hr Test Results Are In …. (personal story)

In the mail was a letter from my GI Dr (yesterday 7-20-2013) with the results from the 4hr GES she had me do.  I think I have calmed down enough to post this today.  All she wrote was:

Dear Melissa:

Your gastric emptying scan was normal.

If you have any qusetions or concerns, please don’t hesitate to call.

Sincerely,

xxx

This told me nothing!  I do not know what my ‘normal’ times were or anything!!  On Monday, I will order my records from her office and the lab that did the work.  

The other issue I have is now she will not diagnose me with Gastroparesis.  As a reminder, I was diagnosed with GP after the 2 hour GES (gastric emptying scan) from a different GI Dr.  Whom I fired, as I didn’t like her.   Now the new GI Dr (whom I liked a lot) will not help me any further.   She felt as if my problems were neurological and not necessary gastroparesis.  For her to confirm GP, she wanted results from the 4hr GES. 

I know something is wrong with me and feel strongly still that I have GP.   It could have been a ‘good day’ for me when I had the test run.  In addition, what they gave me is of course low-fat and low-fiber, so it too may go quicker in my tummy than what I try to eat.   This does not in any way negate that I have pain 24-7, nausea 24-7, dizzy spells, vomiting, fatigue….

My next big problem is what will SSD (disability) do?   They will see this new result and may determine no benefits because I showed ‘improvement’.   At this time, they are only basing their decision on the results of the 3 Drs that they sent me to and I should have a decision in the next few weeks.   But, if I have to dispute (forgot the word) the denial (about 98% of SSD is denied upon the 1st request) then disability will see these results.  I have a good lawyer set up who has handled GP cases, so he will defiantly earn his keep!

In the mean time my PC Dr has asked for me to see her, as she is getting some of the SSD Dr’s notes in  and wants to send me to a neurologist.   This leads me to my last problem.  Financial.  I have no clue how I begin to pay for all of this.  I am not working and already owe about $1,000 for the GI Dr office visit of 11 minutes and the 4hr GES.   Then the PC Dr and Neuro Dr will all add up, besides any tests they may want to do.   I simply do not know how all of you GPer’s do this!

I want to know what is wrong with me and to find the help that I need…. so I keep shelling out money to continue my needle in a haystack adventure!  

My chin is up and I am plugging along, the best that I can do, like the rest of us.   Thank you all for your encouraging words the other day.  I hold you all in my thoughts as I continue to help spread awareness to find a cure/treatment for us all!

HERE is my blog on my 4hr GES vs my 2hr GES (the differences).

HERE is my blog on my last GI Dr visit (6 week wait for an 11 min appointment)

My 4 Hr GES (Gastric Emptying Study)

After already having a 2 Hr GES about 14 months ago, I thought I was well prepared going into today as far as knowing what to expect.  Man, was I wrong!   The 4 hour version was nothing close to the 2 hr GES.

2 Hr GES (for me – others have reported differences) :

• Egg Salad Sandwich and water.
• Lay down for 2 full hours as the machine above you takes pics every couple of minutes.

 

The 4 Hr GES for me (apparently others have had slightly different experiences) went like this:

• I got to eat Egg Beaters (about 1 full measuring cup), 2 pieces of toast with strawberry jelly and water.
• I was told to make sure I eat the eggs, drink the water and eat as much toast with jelly as I could.  They told me the sugar in the jelly was a key component to digestion.
• I had only 10 minutes to eat it all.   Since I eat chew everything until it is almost nothing (this helps reduce the pain when I eat real food), I knew I had to eat like I did pre-GP and pray I don’t get sick.   I managed to swallow the eggs with the water and eat 1 piece of toast in the 10 minutes.  Yuck!  Is all I have to say about that.
• The bell rang for 10 minutes (they checked on me at 5 min to let me know), and I was escorted to the other room to stand in front of a machine, not moving, for 2 full minutes.  Being dizzy does not help achieve this goal very easily.
• At the end of the 2 minutes and the tech is happy with the picture(s), I was taken to the main waiting room.   They would call me back in 30 min to do another session of the 2 minute photo-shoot. 
• We continued this process for 2 hours – or 4 picture sessions. 
• Once the results from the last test was in, the tech looked them over and said that I would need to come back in 2 hours and have one last image taken.   That my stomach was slow enough (couldn’t tell me how slow) to warrant me to continue with the GES test.
• I could go where ever I wanted, do what ever I wanted, as long as I was back in 2 hours and did not eat or drink anything.
• When I got back he had to note if I got sick in any manner, which I did not (pat on the back)!  It was a nice day, so I hung out by my car and played on my phone.   The time was too short to drive home and I was too dizzy to actually walk around a mall.
• The last of the pictures were taken and I was on my marry way to wait 1 week for the results from the GI Dr’s office.

 

I can say that I am very happy with this test.  I would do the 4 hour GES in a heartbeat over the 2 hour (laying down for that long made my legs and butt go numb).   The waiting room sucked to be in for that long, but was much better than counting tiles.   The place I had the GES done does not have clocks or tvs.   I hear from other people that some got to watch a movie!   All I got to watch was the blurry computer monitor screen with my digestive track.   This was much better.

The only bad part of today is that I now have a GP Baby and it is killing me!  The pain from the bloating is crazy and the heat is not helping me stay comfortable.   Below is a pic of my normal tummy day (taken a few months back -but I’m still the same) and a pic from a few hours ago.

4 Hr GES Study Tomorrow (personal blog)

If you have not read my last 3 blogs then following is a very brief update:

• My first GI Dr (who I do not like and no longer see) had me do a 2 hour GES (Gastric Emptying Study) and diagnosed me with Gastroparesis.   My half-time was 240 min (or so) and a ‘normal’ person would have completed the GES in 60-90 minutes.
• My new GI Dr will NOT diagnose me based on a 2 hour GES.  She wants the full 4 hour study.   She has been in our town for 1 year and has made the clinic agree to do the 4hr test on her patients.  
• I had written a blog on 2hr vs 4hr, as I do not feel the 2hr is good enough to diagnose with GP.   Link is HERE.   But don’t really want to have to pay for this test ‘again’.  It was several thousands of dollars the first time around.   Plus, digesting that crap so they can take pictures of the food as it goes through my system, can’t be too good for me either!

Tomorrow is the day that I have to do the 4hr GES.  I could hardly get down the egg salad sandwich last time (plus water), so hard to say how my body will react this time.   Also, my body does not do well (high nausea and pain) if I get up before 9am.  I do not understand WHY this happens, it just does.    My appointment is at 8:30 with 30 min needed to get there.  Guess I will set the alarm for 6:30 so I have plenty of time in the bathroom with my nausea issues.  

 

I am scared this time around.  It is not because of the unknown of what to expect (what will it be like, where am I going, etc).  Been there – done that.   This time it is “what will the results show?” 

I am scared that if denied disability (should know something in the next few weeks) and if this 4hr test comes back with better results than the 2hr test (14 mos ago), that I may not have a leg to stand on for an appeal.   

The other thing that makes me scared is if the test comes back saying I digest at a normal rate or even a slightly longer rate than the average person.   Meaning, “gastroparesis” will not be diagnosed by this doctor.   So what is wrong with me if I don’t have GP?

All these thoughts have been running through my head for the last week now.  Along other family issues (possible relocation) and a few other issues.   The stress of all of this is not good for any person and especially one with a chronic illness. 

Crossing my fingers and praying all goes well tomorrow.   It is going to be a restless night that’s for sure!   The heat will not help me get to sleep either (I am slowly not liking summers due to the effect on my body). 

Thanks for your continued support and I wish everybody a good tummy day!

 

My Digestive Study (Gastric Emptying Study)

Yes, I am skipping my Part 2 of My GP Story.  Hopefully tomorrow I will get more time.

Tonight it is about the Digest Study I had done.  That is what my GI Dr called it.  Come to find out it is really a Gastric Emptying Study (GES).  It seems that across the country this test can be different for us all.  Ranging from 2 hours to 4 hours and we all can have different ‘food’ to consume first.

During my test I was given a full egg salad sandwich (other option was oatmeal) and a glass of water.  I was asked it I could consume the full sandwich or if I needed 1/2 of one.  The 1/2 sandwich would still contain the same amount of egg.  I said I would get the full one down.  The liquid was also required.  It took me about 20 minutes and pray it would stay.  At that time I didn’t know what was wrong with me, but typically would eat anything, but only in a small amount.  It stayed down, for the record.  But I felt as if I was gong to gag at any moment.

The ‘food’ you are given contains a radio active material.  So they have to document how much you ate and do what ever it is with the numbers they have.  I ate all but a little crust.

Then, I got to lay down for 2 sold hours on a table with a machine over the top of me.  I could not move in any direction and even if I tried to lift my head I would hit the machine.  I could look up or to the right.  Luckily, to the right was the monitor.

Every minute there would be a new picture of my stomach and the food in it.  It looked more like an ultra sound picture than anything!  But beside counting the tiles on the ceiling, there was nothing else to look at.

Each 30 minutes I was asked if I needed to quit or just walk around.  I was not a quitter and going to do this!  I gave no sounds or indications I wanted to be done.   She kept telling me that most people she has had only last 30 – 45 minutes and that is okay.  They can work with those numbers.   In my mind I didn’t see how ‘accurate’ that would be.  I stuck it out the full 2 hours.  My butt was numb and parts of my legs.

After the 2 hours, I got to sit up slowly and then do it all over again.  Well sort of.  I was taken to another room with the same machine.  She wanted me closer to her office so that she could monitor me better.  I had to walk there (speeding digestion with gravity alone) and then laid back down.  This time I was given an injection of Reglen, very slowly.  As soon as the second drip happened, I was itchy, hot, claustrophobic and was in fear of everything, especially my fast heart rate.  Then the third drip hit and I was in so much abdominal pain it was crazy!  I had about 15 minutes left of that 30 min test and I was ready to run to the bathroom.  I made myself do it and she documented what was happening to me.  Since I was at a hospital for this, I knew it would be okay.  I made it the 30 minutes (still think she let me go early) and headed off to the bathroom for the next 30 minutes.  After all that I just headed home and went to bed!

About 2 weeks later I got my test results.  Mine had the number that they estimate I would have an empty stomach after that ‘meal’ and what the regular populations time would be for the same thing.  It took me 4 times longer.  The test of mine told me that I am at 250 minutes and a ‘normal’ person is 60 minutes.   There is a lot of controversy over what ‘normal’ is.  But that is what it showed on my test results.   Then there was the section where I was given the small does of Reglan and my processing time was speed up to 30 minutes!

Therefore, I was diagnosed with Idiopathic Gastroparesis.

Now you know a little about the Gastric Emptying Scan in general and how mine was done.  Below are some links for more information on the test.

Here are my concerns with the test/study:

• The Gastric Emptying Study is suppose to be a 4 hour test.   How can the logorythems for anything other than that be accurate?  Especially if the place I went to is okay with just a 30 mintue test??
• The ‘food’ types are different.  For an accurate study, wouldn’t we all need to eat the same food?   I understand that some of us can’t even tolerate solid food anyway.  But for those of us that can, it should be the same food.  For me, if I took the oatmeal, I know for a fact that my stomach would have problems with that (over the egg) and my results would have been even slower.  My stomach (GP) does not like oatmeal!
• Gravity!  My place allowed me to get up and walk around, if needed.   I didn’t.  But, this would speed up digestion, even if it is a little bit, it still messes up the results.  Then the image is not in the exact location it was before when you go to line up the pictures.
• Repeat tests — Some will take the ‘test’ and then have it done in a year or two to see where they are at.  I don’t agree with this practice.  Just save your money!  Any day or even time of day for us GPer’s our stomach processing time will be different.  How do you know that when you first did it, it wasn’t a ‘good day’ (you were quicker) and then the retest may be on a ‘bad day’ (your slower)?  How would you look at the results then?  Even eating something different will change the study… for just you.  Or the amount you were able to consume.

Knowing the amount of a delay you have will give you the diagnosis of gastroparesis, but does it really help knowing how slow we are?   It does to a certain extent that you know after you ‘eat’ a real meal, when it will be out of your system.  And if the processing time is extremely long, you may want to alter your diet to more soft and liquid meals.  This way your stomach has a fighting chance to process the meal and not leave you with bad symptoms.  Okay, worse symptoms.  As we all know, it is hard to get rid of them!

Thanks for reading my rant!  If you didn’t guess… it’s my option that this only test that we have to diagnose gastroparesis is a joke!  We need something better and more accurate.  Yes, it is a good jumping off point.

 

========UPDATED 7-2013==============

I was sent to do a 4 hr GES.   Here is more info on the difference between the two that I experienced.  Click HERE.

 

 

LINKS:

http://www.healthline.com/galecontent/gastric-emptying-scan

http://www.medicinenet.com/gastric_emptying_study/article.htm

My GP Story — Part 1

Just in case you want to know a little more about me, here is my Gastroparesis Story….

I had been on birth control pills since 2000, when I gave in and started to take them due to dysmenorrhoea.  I am the type of person that does not want to take pills of any sort.  Especially the ones that alter my body (in this case, hormones).    For the first few years it seemed okay.  Then all of a sudden, I was changing them every year or twice a year due to many other issues that came up.  Such as high levels of nausea.   In review of my medical records, I can not find the exact year this started to happen.   But I feel it was around the time of my accident (story below) and maybe when my gastroparesis started.  

In 2004 I was in an auto accident.  While driving on the freeway at 70 mph, traffic came to a stop.  I stopped and looking in my rear view mirror there was a good 6 car lengths before the pickup truck coming at me could stop.  Yet, he didn’t.  I saw him coming closer and closer, so I moved my car as far left (I was in the left lane) as I could.   The cement barrier prevented me from going any further out of the way.   It was a construction zone at that time.  He hit my little sports car with great force sending me up the cement barrier, my left wheel caught and the car fell back down, the right front going into the pickup truck in front of me.  A few more dollars of damage and the car would have been totaled.   I had minor issues and refused the paramedic’s help.  This was a morning commute to work, so I called them to say I would not be in.  Later I was driven to my doctor.   As the whiplash set in, I could not turn my head.  My shoulder was in so much pain as well as my leg.  During the year I had many MRI’s, other tests and 9 months of physical therapy (3 different companies).  I drew the line of a scope of my shoulder and just live with the pain and numbness of my right hand, including fingers.  The neck still bothers me as well as many migraines and the sciatica in the leg still comes and goes with lower back pain.  With a small lawsuit I got my medical paid for, but it is not nearly enough with all the issues I still have 9 years later.

It was around 2006 I started to notice that I could not drink water. It hurt to bad.  And I couldn’t eat too much without getting very full, early.  This continued and I told my primary care doctor every year during my annual exam.  Plus, the nausea of the birth control was awful during my period to where I was not going to work.   She never did anything, but change pills and suggest I find a different method of birth control if this is making me so sick.

Fall of 2011 I was having bad chest pains and told my doctor during my physical.  She did an EKG, but assumed it was GERD and put me on Prilosec.  I took it until I had issues with that.  I as not having a bowel movement, even with a laxative.  Plus it was not helping.

March 2012 I gave in with the daily chest pain –yes, 4 months later! — and went to the Urgent Care.  I spent more than 5 hours there!  I think any test they could do, they tried.  Even had an upper GI series.  They gave in and told me to double up on the Prilosec.  They couldn’t find anything wrong.   Really?!

March moved quickly with tests.  From an ultra sound of my organs, to an endoscope and what ever else they could through at me.  In April I had a GI Dr and my first digestive study.  I wasn’t going to go do this.  First was cost, second was I was so very tired of all they were doing to me.  My husband talked me into it.  I went.  That was when I found out I have Gastroparesis.

I am not diabetic and they have never figured out why I have gastroparesis, so I am ‘idiopathic’.  Since my dad and his mother are diabetic, ever time I go into a dr’s office they test me! 

It is my belief that the auto accident caused damage to the vagus nerve, but all of my doctors tell me that the time of the accident (2004) to how bad my symptoms are now (2012), it could not be related.  I would love to find out one day!

TO BE CONTINUED …