Sharonvandee

Gastroparesis? Part Of Scleroderma?

4 posts in this topic

Hey

 

I have finally gotten the result of the gastroscope done a few weeks ago. The specialist diagnosed gastropaesis. He informed me that neither valve on the stomach works. He discussed doing a nissen fundipication but said he would only do this if I lose at least 10 kg lol whilst on steriods.

 

Just wondering if there is anyone else out there with this and wheather is is related to the whole connective tissue problems or if it is a seperate problem

 

thanks


Kindest Regards

 

Sharon

 

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

 

a little bent and broken and almost beyond repair!

Share this post


Link to post
Share on other sites

Hi, Sharon. Sorry to hear about this, but at least you are getting some answers at last. I am not sure about your question, but here is our section on Gastroparesis for you to read. There are some personal stories there that may be of interest to you.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Jefa

 

Thanks for the link. I suppose I just want to know if there are others out their with this and if so how they cope, medication etc

 

I was a little overwhelmed when I posted as I had just gotten back from the Dr and feel like this is just another thing to add to the list

 

On the other hand what I have suspected has finally been confirmed


Kindest Regards

 

Sharon

 

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

 

a little bent and broken and almost beyond repair!

Share this post


Link to post
Share on other sites

Sharon-- I also suffer from gastroparesis. When I eat anything, it justs sits in my stomach and I get very distended, nauseous, and vomit. I now take nothing by mouth except a few meds and am on TPN for nutrition. It's an IV twelve hours a night. I have a portocath in and it is always accessed. I have a GI tube in my stomach so when I do get distends (when I cheat and eat or for no reason at all) I can suck out whats in my stomach. I hook up to a gastric pump. That enables me to at least drink coffee and then suck it out.

 

I have systemic sclerosis with most of the involvement in my entire GI tract, top to bottom.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now