Posts Tagged ‘education’

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!

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Are you sick at the same time every month with your gastroparesis?

IT MUST BE CLOSE TO THE 20TH OF THE MONTH.  This is my saying and warning to my husband before we plan anything.   Have you ever noticed that you are sick (with gastroparesis) more so during a specific time every month?  If not, you may want to do a chart/journal.

No, I am not talking about the female thing (but I will below).  This is GP related.  Always about the 20th of the month all of my GP symptoms go crazy.  Intense everything: nausea, pain, irritability, headache, fatigue, depression and that ever expanding stomach to where my clothes don’t fit and when they do they bug the heck out of me!

It is also around the 20th that my hormones will change.  I deeply feel that there is a link between Gastroparesis and hormones.   Yet, I have not found good enough proof to share with you all and all of my Dr’s to this point think that there ‘could be’ a link, but they can’t say for sure.  Ugg!!   On days like this I want to see more education, funding, trials and awareness for gastroparesis so that we can all get better!!

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WARNING:  This section is for the lady’s …..

For many years I got violently ill during that time of the month for me and would change my birth control pills thinking it was that.  For about 12 years that I was on them, I tried over a dozen types (different doses, types of hormones, ect).   They never seemed to work but a month or two.  I was getting to tired of this and felt my body didn’t want birth control pills, so if I stopped taking them, I would get better.  That was a very wrong thought too. 

After being diagnosed with gastroparesis, I figured I would end the birth control thing and get a procedure done, since my husband and I agreed on no children.  It was my idea to get the procedure and not him, so that maybe I would feel better (always had painful periods that would lay me in bed for 2 days).  It was quick and easy.  I do not regret the decision.

But, it didn’t change my life as much as I had hoped.  Come to find out, I still get very sick during the same time every month (with or without a period).  It was never the birth control pills.  It is actually my hormones and how it effect gastroparesis. 

So what can we do about it?  Very good question.  But my primary care doctor and my GI do not want to touch this one!  I know that there are tests we can take to monitor the hormone levels and a cream that we can put on to get enough of a dose to regulate the body.  My insurance company will not cover it, it is way too expensive for me to pay out of pocket and we do not have a place in this small town to have this done.   My last thought is of supplements.  Soon I will go down that road and see what I can do to myself!   It needs to be in a block of time that it is okay if I relapse and get very sick.  This all must be planned out before I make myself a guinea pig (again).

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