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View Full Version : Gastroparesis... who else has this suspected to be caused by their lupus?



giggle
10-16-2011, 05:14 PM
I think mine may have been caused by damage during abdominal surgery... but someone the other day said that theirs was most likely caused by lupus attacking the nerve... I am wondering how many others have lupus related gastroparesis?

Also... what treatments have you had to go through and what extent is your paralysis? What foods do you eat to cope and what have you had to eliminate from your diet?

I am struggling. I have eaten very little over the last couple of weeks and when I do eat I can't keep it down. Its starting to scare me because I am at the point that when I do eat, if I havent vomitted naturally I feel sick/bloated and I have to go and induce vomitting anyway.

And... if I do eat... and I dont end up vomitting... and I dont end up purging... it sits in my stomach for hours/days... and when it does finally leave my stomach it (beware too much information coming up) is rejected instantly by my intestines and is painfully 'purged' out the other end... to put it politely. I guess probably because of bacteria build up.

The only time I feel good is when I am not eating. I still get hunger pains though, but I am so bloated I couldnt bare to eat much.

As you can imagine, food and I are currently very much not friends and I can not imagine eating properly ever again : ( the smell of food still makes my stomach growl though, but the look and thought of food... I browse the fridge and cupboard ten times a day and just feel sicker after looking :/

I can stand to loose weight, what I am mostly concerned about it vitamin levels and keeping my heart healthy in the process. I have searched the net but haven't found anyone that has gone through what I am now... I havent been hospitalised but that may be because I am drinking a heck of a lot of water? Yesterday I felt asthough I would passout though, I have to drive to the docs later, I am a bit worried about that.

BonusMom
10-16-2011, 09:34 PM
I have Gastroparesis (GP). It was GP that led me to finding out that I had Sjogren's Syndrome and SLE in 2008.

In late 2005 I began vomitting after eating just a few bites. If I didn't know better, I'd have thought I was pregnant. I had no symptoms of GERD, but my PCP put me on reflux meds anyway. They didn't help, of course. I had a colonoscopy and an endoscopy. They found erosions in my esophagus from all of the vomitting. Then they did a Gastric Emptying Scan that showed I retained an obscene portion of the eggs and toast after four hours.

I self-referred to a motility specialist when the local GI's only suggestion was to eat smaller portions. No way could I continue this lifestyle. Eventually, I was asked to participate in a research study--the multitude of labs is what led me to a rheumy and the cluster of AI diagnosis.

I do believe the AI and GP components are related. Yes, my eyes and mouth are very dry, but I believe that my digestive tract, in particular, have been attacked and GP is the result. GP flares, just like AI disorders. I do well for quite a while, 9-12 months, then it's back to vomitting everything.

Initially, I was lucky to keep a few cans of Ensure down a day; then I added in crackers. Unfortunately, the "diet" is so very unhealthy. The GP motto is "white is right" meaning all white foods that are easily digested-no fat, no fiber and basically no nutrition. Try to take a multi-vitamin (they do offer them in liquid form-although they are not very pleasing to the palate). I lost weight initially, but the I regained it when I followed the "diet" because everything was lacking in nutrition.

Yes, I felt "full" after eating a few bites and made myself throw up because I was so uncomfortable. When I had a hard time, psychologically, because everyone else around me was eating food and I couldn't, I didn't sit at the dinner table with the family to drink my evening "meal." Eventually I did, but at first I couldn't.

I hardly have any nausea. Some people have unrelenting nausea.

It's important that food doesn't sit in your stomach or you can develop a "bezoar" which is a like a hairball in a cat. Very painful.

PM me if you have any further questions.

giggle
10-16-2011, 11:39 PM
Thank you so much I think I will send you a PM : )

I havent been diagnosed yet, because my GP wont send me for a gastric emptying study even though the ultrasound tech not just recommended it, but said an ultrasound is useless for my issues. The doctor had no answers for my issues, no recommendations for nutrition. Just look surprised when I said I had trouble making 200cal a day.

feel like I am developing an eating disorder!!

BonusMom
10-17-2011, 03:38 AM
An ultrasound isn't going to show if your stomach is emptying properly. It'll show gallstones, an enlarged spleen or perhaps an obvious liver issue. Your doctor should refer you to a Gastroenterologist for expert evaluation and treatment. A general practitioner doesn't know enough to treat GP. Heck, the local GI only advised me to eat smaller portions. It was a motility specialist who did further testing that determined where my stomach stopped working and provided treatment options.

I've sent you a PM. Rest assured, GP has been more difficult for me, psychologically and physically, than SLE and Sjogren's has been. Finding out I had SLE and Sjogren"s was a relief as it explained why I had GP, but those two diseases combined aren't as bad for me as dealing with the effects of Gastroparesis.

Then again, we're all different.