It’s not just IBS!!

[Sallylouisexo]

I think I have gastroparesis. My symptoms line up but the doctors just keep shoving me away with IBS. How can I get the doctors to listen to me? This is pure hell !!

[hunter5582]

Assertive patients receive higher quality care. Passive patients do not. Sometimes you have to be persistent. Very persistent.

I also had an incident of apparent gastroparesis back in 2013. It was so bad that I could not even get water to move through my system for a sold week. Then it spontaneously resolved. Was likely some sort of blockage. It caused a significant case of gastritis and my GERD spiked as did the esophagitis. I totally get why you are so concerned.

Do bear in mind that the body is an integrated system. The IBS is likely part of what is going on. So is the MPN. MPNs are at the core inflammatory disorders. The deregulation of the JAK-STAT pathway causes your body to make too many inflammatory cytokines. This most certainly can affect your GI tract. Inflammation in the GI tract can cause a host of problems. FYI - those problems include a spike in anxiety/depression/insomnia due to both biochemical and neurological signals between the brain and the gut. It can create a feedback loop that keeps the problem going since the brain influences the gut too.

Consultation with a gastroenterologist working in collaboration with a MPN Specialist is what is needed. There are treatments for OBS, gastroparesis and the systemic inflammation associated with MPNs. You will have to work with your care team to figure out what is going to work for you. You will have to assert yourself to make this happen.

Hope you find answers and relief soon.

[Peterwi in reply to hunter5582]

Hi Hunter, I just want to say how impressed I am with your knowledge and thank you for always being willing to share it with the rest of us. I have learned so much by reading your answers. 😊

[Mazcd Partner MPNVoice]

hello Sallylouisexo, really sorry that you are having this problem, but you do need to discuss this with your doctor. Do you have a MPN, as you haven't said you do. Maz

[Angelinagaffer]

Just need to keep going back to the GP, until they listen.

[Pte82]

Sally there could be an answer in a thiamine deficiency

hormonesmatter.com/tag/thia...

eonutrition.co.uk/post/thia...

nootropicsexpert.com/vitami...

[souplover]

Hi Sally, I've had some of the same and it can be miserable as Hunter says above. I've had a lot of relief from taking Amitiza and Dicyclomine on a daily basis. Before I started with these two, I was constantly going home doubled over with a stomach ache, real misery. Also of course, drink lots of water, exercise, get enough sleep, etc. But truthfully, the real clincher for has been the meds, unfortunately! (and yes, Hunter, thank you for sharing your wealth of knowledge with all of us.)

[hunter5582]

BTW - If the docs are saying it is IBS - IBS is a treatable condition. What treatments have they offered? What does your hematologist have to say about the IBS and how this interfaces with your MPN?