Gastroparesis. After almost a year

[MuseRider]

of illness, my entire body scoped, mri'ed and scanned, the removal of my gallbladder it comes down to gastroparesis. Just got the diagnosis yesterday, still not 100% but likely. Does anyone here have this? It sounds life long and unpleasant BUT I am not dying so am just a little whiny at the moment. It sounds a bit difficult to deal with so if anyone has experience with it please let me know.

[DeadLetterOffice]

1. Whiny is appropriate in reposne to chronic diagnoses.

My understanding of gastroparesis is that it's not any fun at all, and many people with my underlying disorder (Ehlers-Danlos) seem to have some form of it.

There's quite a few support groups that deal with the disorder on Facebook, if you're into such things.

Gentle hugs,
DLO

[MuseRider]

2. Thank you and gentle hugs back to you, EDS is not an easy thing

to live with.

I am hoping this will resolve itself but for the last 10 months I have been suffering as we did everything to find out what was wrong. We all hoped getting rid of my gallbladder would do the trick but this has gotten worse so I suppose there is still just a slim chance it could resolve. I am not counting on that, I would rather it be a happy surprise.

I do have RA but it has remained very mild for me. My main concern with the other issues is how on earth I can take oral meds for them. I am narcoleptic and medicate about 4 times a day for that. I will figure it out. I went to FB and looked around and I really appreciate you telling me about that. Oddly I had not even thought to look there.

I so wish this was not happening, it will sure take a lot of joy out of occasions but I am living and it will not kill me so I can manage to find other ways to express myself while others eat.

I hope you are doing well. EDS is not very common I don't think. I am a retired nurse and have auto immune disease so I had heard of it. Funny that gastroparesis I had not heard of!

[DeadLetterOffice]

3. I find social media...

...to be a helpful way to link up with others who have rare disorders. It's not like there's a dozen folks in my rural area with EDS, so FB and Twitter help me feel less alone., and to get a sense of what's 'normal' for my illness.

A couple of my Twitter friends have gastroparesis, and it's definitely a challenge for them, but you're right - they are still living and finding joy where they can. After the diagnosis shock wears off, I hope you can do the same.

All the best wishes,
DLO

[Nay]

4. I have dismotility on the other end -- my large intestine. I can

sympathize. Food stops dead in my colon. Fortunately, prescription and non-prescription laxatives work for me.

This Mayo Clinic site is informative:

http://www.mayoclinic.org/diseases-conditions/gastroparesis/basics/alternative-medicine/con-20023971

[MuseRider]

5. GI stuff can be tricky.

I am sorry that you have that but thankfully those meds work.

I appreciate the info, thanks!

Right now I am documenting everything I eat as I eat as I normally would. I have to compare it to how I feel looking for triggers. If it is mild enough then I will not have to be as restricted as others. At this point I can confirm I will not be eating much popcorn or corn chips the rest of my life. OMG they tear me up, but OMG I love them so, but then I really would rather not spend everyday throwing them up.

I wonder if corn ferments quicker than other things? At least there is a lot to learn and that will keep my mind busy so I don't just jump to the worse possible conclusions.

I hope your dismotility does not spread.

Thank you so much.

At this point today I am feeling so much better, no matter how difficult this might be at least I can see living the rest of my life without feeling like I have the stomach flu constantly.

[Nay]

6. Good luck to you, too. And yes, corn ferments really fast -- IIRC,

prisoners use it to make illegal liquor!