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Is anyone struggling with gastroparesis; slow stomach emptying?

Posted by ldlanning @ldlanning, Nov 4, 2023

My struggle with gastroparesis began in 2019, but was not diagnosed until 2021. The gastroparesis and who knows what else has triggered multiple autoimmune responses including emphysema, malnutrition, the leaching of calcium from my teeth for my body to maintain homeostasis, depletion of other proteins and minerals used to maintain homeostasis because my body is unable to properly break down and process food. There isn’t any enamel left on my teeth that will all need removed, chronic dehydration resulting in UTI’s and the loss of one kidney leading to stage 3 CKD. And it just goes on from there. I have an extremely small support system, but my faith is very strong. I’ve not been able to reach out to anyone who is also struggling with this disease or even knows what it is. I continue to have issues with elevations in markers for Lupus, Connective Tissue Disease and Sclaraderma. I would love to swap stories with anyone who is familiar with this disease. I have a very beautiful, intelligent, compassionate service dog who has given me purpose as God has entrusted me to care for this beautiful creature.

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talltxlady | @talltxlady | Nov 4, 2023

Hi @Idlanning, I'm sorry you're going through so much right now. I can't really comment on your particular issues because all of mine are different. But I completely understand the faithfulness and love you give and receive from your canine companion. Aren't dogs the Best! Nothing but pure love there. God Bless you, keep you and comfort you in your trials 🙏🤗😇

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Nov 4, 2023

@Idlanning. You were diagnosed with this gastroparesis in 2021. Was it under some control for those few years until now? Have you got a good gastroenterologist? And what are they doing to help you?
You might find some information if you go to Autoimmune Support Group page.
https://connect.mayoclinic.org/group/autoimmune-diseases/. Near the top of the page, there is a search box where you can enter anything that you're looking for. Put in ‘gastroparesis’ and see what comes up.
https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/ You can do the same search in the Digestive Support Group. Looking things up this way will take you straight to similar discussions and members.
https://connect.mayoclinic.org/discussion/gastroparesis-and-autoimmune/ Here is an example of what I found!
Can you try it?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 5, 2023

Hi @ldlanning, I add my welcome. Here are a few related discussions you may be interested in:
- Anyone diagnosed with Gastroparesis?
https://connect.mayoclinic.org/discussion/gerd-gastroparesis-neurogenic-bowel/
- Gastroparesis Diet – Questions, Suggestions, Tips
https://connect.mayoclinic.org/discussion/gastroparesis-any-body-have-any-suggestions-about-diet/
- Gastroparesis or slow modility colon
https://connect.mayoclinic.org/discussion/gastroparesis-or-slow-modility-colon/

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farmgrrl57 | @farmgrrl57 | Nov 5, 2023

Hi, I have gastroparesis. I was diagnosed in 2019 but I know I had it at least three years before. Mine is a gift from diabetes. I don't have the same issues you mention, except the slow digestion and incomplete digestion. Even when I take a senna tablet, it takes 3 days to actually affect me. It's really been frustrating. My sympathy to you. I have no words of wisdom, but wanted to let you know you are not alone.

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Nov 5, 2023
In reply to @farmgrrl57 "Hi, I have gastroparesis. I was diagnosed in 2019 but I know I had it at..." + (show)
@farmgrrl57

Hi, I have gastroparesis. I was diagnosed in 2019 but I know I had it at least three years before. Mine is a gift from diabetes. I don't have the same issues you mention, except the slow digestion and incomplete digestion. Even when I take a senna tablet, it takes 3 days to actually affect me. It's really been frustrating. My sympathy to you. I have no words of wisdom, but wanted to let you know you are not alone.

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@farmgrrl57 What treatments are you getting now or have you had? Do you follow a special diet? Have you had problems with diarrhea? I had a very serious problem with incomplete digestion that none of the doctors agree on. One says it was a serious drug reaction, and one says it is exocrine pancreatic insufficiency . And I think it could be another autoimmune disease, microscopic colitis. Took about a year to get a diagnosis. 😉
Do you think that you have things under control now?

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farmgrrl57 | @farmgrrl57 | Nov 5, 2023

It's hard when it takes years and your diagnosis still isn't nailed down, I know. I've decided it's like trying to hit a moving target, lol. I've resigned myself to the idea that it may change again. For all their training, doctors are still imperfect people so they aren't going to get it perfect, right? I was prescribed metaclopramide after I pestered my Dr. to death. He finally passed me off to a gastroenterologist who just took me off of it and said I was fine. I'm not fine. Having gastroparesis is a big impact in my life, and it really stinks. I would go to a different dr. If there was a choice. He's really nice, but too offhand for my taste. I am managing by noticing what bothers me and avoiding those foods. I also have diverticulosis. I know that the most recent guidance on this is " seeds don't have to be avoided", but for me that's not accurate. Especially little seeds like strawberries, blueberries and cranberries. And I cannot digest flaxseed black sesame or chia unless they are ground.

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Nov 7, 2023
In reply to @farmgrrl57 "It's hard when it takes years and your diagnosis still isn't nailed down, I know. I've..." + (show)
@farmgrrl57

It's hard when it takes years and your diagnosis still isn't nailed down, I know. I've decided it's like trying to hit a moving target, lol. I've resigned myself to the idea that it may change again. For all their training, doctors are still imperfect people so they aren't going to get it perfect, right? I was prescribed metaclopramide after I pestered my Dr. to death. He finally passed me off to a gastroenterologist who just took me off of it and said I was fine. I'm not fine. Having gastroparesis is a big impact in my life, and it really stinks. I would go to a different dr. If there was a choice. He's really nice, but too offhand for my taste. I am managing by noticing what bothers me and avoiding those foods. I also have diverticulosis. I know that the most recent guidance on this is " seeds don't have to be avoided", but for me that's not accurate. Especially little seeds like strawberries, blueberries and cranberries. And I cannot digest flaxseed black sesame or chia unless they are ground.

Jump to this post

@farmgrrl57 Is it possible for you to get an appointment at a comprehensive medical center or university medical center in your state? You deserve to be evaluated and not just passed off. Most doctors just aren’t all that familiar with autoimmune diseases. Doctors at university or major medical centers have a lot more knowledge and could help you more. I ended up at a university hospital when the local doctors couldn’t figure out what was wrong. And I’m so glad I did.
Will you think about it and give a call tomorrow?

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