Archive for June 3rd, 2013

My GP Story — Part 2 (1st GI Dr)

My GP Story Part 1 (https://melissagpfight.wordpress.com/2013/06/02/my-gp-story-part-1/) left off with me being diagnosed with gastroparesis after the gastric emptying scan (https://melissagpfight.wordpress.com/2013/06/03/my-digestive-study-gastric-emptying-study/). 

Well the GI Dr that read the results and did all she could to get me a diagnosis was simply not for me.  She didn’t care about her patients in anyway.  I was read my ‘results’ and handed a 1 page print out of what gastroparesis is, a copy from the Mayo Clinic.  She said this is all that you need to know.  Follow this and you will be fine, see me in 6 months if you need any more help.

I went home and looked at the hand out.  What the heck just happened to me?!  I read it and it didn’t tell me what exactly to eat or stay away from.  Simply read: “consume 5 – 7 small meals that are low in fat and low in fiber”.  Really?! 

So I began the search on the internet to see what am I suppose to eat and what should I avoid.  I read a few things, but nothing much that was helpful.  I went into some groups on Facebook and got scared (shitless) with the stories of feeding tubes and death.  

ImageSo, I decided to look for books on gastroparesis.  I found 2.  And neither of which were at my local store.  I dug deeper into the newest one and fell in love with what the author was saying and knowing that she too has gastropareis.  I went to her website and after looking around ordered the book:  “Living Well With Gastroparesis”, by Crystal Saltrelli, CHC.   I was in so much need for information I paid for the express shipping.  In the meantime I was watching all of her YouTube videos.

I can honestly say that I learned 1,000 times more from her than from my GI Dr.  How said is that?  Yet, how great is that, that I knew something about GP and how to ‘fix’ me!!  I will post links below.

Well 6 months came and went.  I changed my diet (foods and amounts) and was still very sick.  Vomiting, Nausea, Dizzy Spells, Fainting, Fatigue, Headaches, and the list goes on.  So, I went back to the GI Dr.  I told her what was going on and what changes I made.  I even told her about the book I bought because her hand out was not very good.  She said, “I would have bought one too, if I had gastroparesis”.   What the hell?!   SHE is suppose to help ME!!  Not a book.  Ugg!!

The GI pushed me hard to take Reglan and I said no.  She didn’t like being told no and kept at it.  I reminded her that I took it during the digestive test and it didn’t go well.  She tried to blame the gal that gave me the medication.  I told her, no I was given it by IV in a very low does and very slowly.  She still didn’t get it.  Then told me to order off the internet the drug from Canada instead.  I said I would look into it.

In the meantime she gave me another refill for GERD medication and told me I better take it, as it is part of the Management Plan I need to follow to get better.   I took the order form, but never took the drug.  I did in the past even at double doses and it never helped.

My third encounter with her was my last.  I had gone in after  about 3 months and said I was still having problems.  And now it is effecting my job.  We went over the Reglan (again) and I am still not going to take it, then I wasn’t going to order the Canada drug, so she was getting frustrated with me.  She was not about to give me drugs to ease the pain -which was fine.  I wanted something for nausea.  She told me to get an over the counter Dramamine and I should be fine.  So, I stepped out of my box and asked her if she knew of a mental health person I could talk to and who would understand gastroparesis.  She looked at me with a blank face and said, no.  I began to cry and she didn’t know what to do.  Then told me that, ‘oh, this must be hard on you.’  I nodded through tears.  Then she said, ‘I guess it is life changing’.  Do you think?!   Before I left she told me, ‘don’t worry, you should be better in a year.  Idiopathic Gastroparesis generally goes away in about 12 months.  You will be fine’.

That was my last GI Dr visit to her!   And I have the nerve to tell her it has been over 12 months and I am still sick, lost my job and am still having problems.  But, I know she will not care, nor will she listen.

I do have a new GI Dr that I love!

To Be Continued…..

LINKS For Crystal Saltrelli, CHC:

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.

ImageThen, 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

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