Sunday, June 9, 2013

1 Year Later I Get To See My Friends!

I am just so very happy that today started out a 4 on a scale of 1-5.  And this is my own gastroparesis self's scale!  A 5 is still GP, but can function like a normal person if I consume enough protein and fluids to keep me going.  1 is basically 'stay in bed - don't bother' day!

When I received a invite from a great friend to help her celebrate her son's 1st birthday, I was so very happy.  Sadly, that was just the first day of a 3 day flare.   So, I had no idea if I could go.  

ImageToday was the day of the event.  First, my husband had an early shift, so he would be home to take me.  Secondly, I was still having a good day with an hour left until we would have to leave.  Third, I was able to get my shower in, get dressed, some make up on and still felt ok.  Yep, the 'good' was lowered to an 'ok'.   So I made a smoothie and that seemed to be what I needed!

I knew what the 'menu' would be and there would be stuff that I could have.  I had a protein bar in the car, just in case! 

It is sad, but I had never seen their little boy before and he just turned 1!!   How said is that?!  What kind of 'friend' am I?!  Why was gastroparesis getting the better of my life?!  So many questions that made me mad and fueled my desire to do better!  Not just for my self by for the friends that have stuck by me.

The event was wonderful.  I knew a lot of people that where there to celebrate his big 1 year birthday!  I only see these people in gatherings like this, so they don't know much about me.  So when I was asked about how my job was going, I happily said that I was no longer working.  That would (luckily) prompt, 'what have you been doing'.  So that gave me the chance to tell them we sold our home and moved closer to town and my husband's work.  I was then off the hook, since they would ask about him! 

It was a day I didn't want to talk about me, my GP and really didn't want to explain that I parted ways with my job because of GP and am not sure if I can go back to work.  In past experience that always prompts 'but you don't look sick', 'you look great and should find a job'.  I have listened to it all and really didn't want to go down this path.   I don't know if they would or not, but I know that it is hard to understand.

We were there for 3 hours , my food choices stayed well and I still felt good.  But my husband never wants me to 'push it' (sometimes), as he hates to see me relapse.  I know, so we left and now I am getting very tired.   

There is always next time and I sure hope that it is sooner than another year!  I missed there little girls' birthday because of being sick.  So happy that they have stuck by me and for their over all concern.  I was even asked if I could tolerate any of the food that they were serving.  How nice is that?!   I love them dearly and their extended family.

Thanks again for a great day!

Friday, June 7, 2013

Amitriptylin and Me

Yesterday I as ill from symptoms related to gastroparesis that decided to become worse than my 'normal' days.   All of us that suffer from a chronic illness know our 'normal' day is not that of a 'regular' person.  We have to tolerate so much more on a typical day.

For some reason mine decided to continue to get worse last night until I head my head in the toilet.  I know I always flare around the 20th of each month, so now (6th) was very odd.  Nothing changed in my life or what I was eating, even the environment (inside and out) seemed the same.  One day I would love to know what my other triggers are!  That's where my journal comes in handy, if I write enough in it (like a detective)!  Link is here if you want to find out more:  http://melissagpfight.wordpress.com/2013/05/23/chronic-illness-journal-blog-1-of-2/

ImageMy husband had the next day off and I wanted to be well, so I could enjoy the little time we do get to have together.   Since the nausea was not going away and I didn't want to be up all night I did the only thing I could.... take 5mg of Amitriptylin.   This is the ONLY prescription drug that worked for me for and I could handle the side effects, if I only took it once during a flare.  The problem for me is it makes me sleepy.  Let me rephrase that!  I took it at 9pm and didn't wake up until 11am and still wanted to sleep.   Like I said my husband was home and I wanted to spend time with him.  Generally I would go back to bed and be awake when he got home at 6pm.  That is 21+ hours of constant sleep because of 5mg of Amitriptylin.   I can not order anything smaller.  I tried cutting mine further, but it wasn't effective.

So I was up, sort of.  Groggy with a huge headache and very thirsty.  Yes, I get cotton mouth with the small dose and a margarine.   But I didn't have my head in the toilet all night.   I had hoped that maybe this time my body would react better with the med.  Guess not.

I made it to the kitchen to get something to drink and watch a little tv.  That turned into a nap.  I made a smoothie so I could get some protein in me (egg powder protein... link here:  http://melissagpfight.wordpress.com/2013/05/29/the-importance-of-protein-powder-ideas-for-smoothies/) and decided to go to the store with my husband so I could get some soup and Gatorade.  I felt like I could make myself do it and I did -for the most part.  He drove as I was way too dizzy to do so.  Closed my eyes a few times and wished I had not gone.  But the store was just a few blocks away and we only needed a few things.  However, the dizzy part is a killer when you are walking down isles with different shapes and colors!  I leaned into him and stopped walking.  He knew what was happening and finished the shopping quickly.  

It is hard for me to just 'rest', (I know it is the best thing for me) when my time with my husband is precious to me and I want to 'be normal'.   Which is highly overated!!  LOL

Back home I had some chicken noodle soup and more to drink.  The dizzy spell is under control, now to work on the headache and off to another nap! 

For me, it is a toss up if I really want to take the Amitriptylin or not.  My GI Dr thinks it is good to have on hand, even though it makes me sleep for so long.  I would never want to forget that I took one, or I could end up in a coma!  Scary drug for me.  I make sure that if I ever take anything my husband knows what it is and when I took it.  Never can be too safe.

Thursday, June 6, 2013

Non-Prescription Nausea Relief Ideas

ImageLet me first start off by saying that the suggestions that will follow will not completely get rid of your nausea.  At least, they didn't for me.  But my nausea is much less being on some of them.  Also, be sure to consult your doctor before you try any home remedies or herbal supplements.  There can be drug interactions and some supplements as well as no guidelines as to how much you (as your own individual case) should take. 

Okay, with that disclaimer out of the way lets begin!  Follow in is a list of items that should help relieve/limit your nausea.  Also, don't expect the diminished nausea to happen instantly. 

 

Non-Prescription Nausea Relief Ideas:

  • Ginger - supplements, candied ginger, ginger ale, ginger cookie/bread, tea
  • Saltine Crackers (breads or crackers of any type)
  • Water (dehydration causes nausea)
  • Mint Tea
  • Lemonade
  • Black licorice candies
  • Altoid peppermint
  • Check to see if you are low in B-6
  • In-scents: ginger, lemon, lavender and peppermint
  • Cool Air / Fan (to bring down your body temp)
  • Cold wash cloth or ice pack on the back of the neck
  • Acupressure - Link: http://www.wikihow.com/Stop-Nausea-With-Acupressure
  • peppermint candy (York or Jr Mints)
  • Acupuncture
  • Message
  • Yoga
  • Short small sniffs of a medical alcohol sanitizing pad (right before you feel you will vomit)

 

I can happily say that I take ginger supplements every day.  If I miss a few days of them, the nausea comes back strong.  I also notice if I get 'hot' the nausea starts to approach as well.  After every meal (any meal other than soup or smoothie) I drink mint tea (Mint Medley by Bigelow) and it works wonders!   I even carry bags with me when we go anyplace.  My body does not tolerate any of the prescription medications, so this I am very limited.

 

Found at a local drug store:

  • Sea sickness band
  • Pressure band
  • diphenhydramine (Benadryl)
  • dimenhydrinate (Dramamine)
  • meclizine (Bonine)

I tried that last 3 items on this list and they had no effect on me.  My GI Dr told me to give them a try before we went down the prescription route. 

 

LINKS:

  • http://www.livestrong.com/article/437870-good-foods-to-eat-while-nauseated/
  • http://www.home-remedies-for-you.com/remedy/Nausea.html  <<foods to avoid
  • http://www.livestrong.com/article/416161-yoga-poses-for-nausea <<Yoga poses
  • http://www.ehow.com/how_6618_shiatsu-nausea.html  << Shiatsu Message

Wednesday, June 5, 2013

GP Symptom Managent with Food Steps

GP Symptom Managent with Food Steps

This is a great picture of our daily life as a gastroparesis fighter! I have this printed and hung in an area of my home that I can see it every day. It is easier to show my family 'what kind of day' it is for me and they can plan their dinner accordingly.

For more info, please click here: http://www.digestivedistress.com/what-to-eat-diabetics-idiopathics

Tuesday, June 4, 2013

Monday, June 3, 2013

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.

 

LINKS:

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

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

 

 

 

Saturday, June 1, 2013

Gastroparesis Links via Emily Scherer's Blog

Gastroparesis Links via Emily Scherer's Blog

Here is a wonderful collection of resources for Gastroparesis that was put together by Emily Scherer.  

I have not been to every page/link she has listed, so I can not endorse all of them.  However, she is a great advocate and follow GPer that I trust greatly and feel the work she does is of high quality.

Check it out!