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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Does Anyone With SLE Also Experience Gastroparesis?

A MyLupusTeam Member asked a question πŸ’­
Starkville, MS

**TW mentioning of vomit**

I have been experiencing bouts of vomiting up my food that I have eaten in days prior. It is like it is sitting in my stomach and not digesting. I looked up my symptoms and it seems to me that I am experiencing gastroparesis. My mother is an NP and feels I am correct, but I am just unsure. Does anyone else suffer from gastroparesis related to their Lupus? I go to the rheum on Thursday and I do not want to be discounted again. Some days it even feels like my abdomen is… read more

December 12, 2022
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A MyLupusTeam Member

I hear you!!! I use so many different things to try to get nutrition in and through my body.
Trial and error...I've also changed doctors. If the current one doesn't hear my symptoms or pain. I move on!!!
Everyone needs a doctor that is your partner!!!
I'm using Lizness, Miralax and Colace..also known as stool softener or docusate...
Please, go slow, everyone's body is different!!! Find a health professional to assist your nutritional intake!

December 12, 2022
A MyLupusTeam Member

I've had a lot of GI problems for some time. I have Sjogren's and RA, and now maybe Lupus. Finally found a rheumatologist who realizes all my problems are connected and has referred me to a motility gastroenterologist. Have to wait another few weeks for that appt. I also have appts with a new pulmonologist, a neurologist, hematologist. It just goes on and on!
I can't eat raw vegetables either, but I'm ok with some fruits.

December 18, 2022
A MyLupusTeam Member

My doctor just gave me samples of Linzess for gastroporesis. I haven’t taken it because thus far Miralax works. First thing mt GI removed was any raw fruits and vegetables from my diet as they exasperate the problem.

December 14, 2022
A MyLupusTeam Member

It's possible that lupus can cause the nerve damage causing gastroparesis, even though it's not a common problem.

December 14, 2022
A MyLupusTeam Member

I just joined this group. I've been dealing with gastroenterologiss for years.
Although they promote Lizness or Amitizza... I feel like both makes part of my body feel better while making another part pay the price.
I'm just mentioning it to say, Please Proceed With Caution. Make sure that you do have good communication with your doctor and gastroenterologist!!! Playing with remedies with your bowels can have severe lifelong consequences!!!!
I just know a few friends that have had to go to iliostomy or ostomy bag...one's on the right side of your abdomen, other is on left. But, pooping in a bag out of your tummy, is something to be cautious about what doctors are setting you up for!!!
My hesitation has caused me to use Miralax in my drinks... any drink! Water! It's tasteless!!
I don't use a full dose, meanwhile I stay under the daily allowed.
Even if I'm eating apple, cucumber, or any fibrous, water filled fruit, i become constipated...well, watermelon is my BEST! But it's out of season...

December 13, 2022 (edited)

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