Anyone diagnosed with Gastroparesis?

Posted by jlfisher56 @jlfisher56, May 7, 2017

I have had problems similar to so many GI people. The swallowing problems (food stuck in the throat, bloating, nausea, feeling like choking, "fullness" for hours). Finally after many upper and lower scopes ( have 18 cm colon left and function 80% well when cervical neck is well), a small hiatal hernia, numerous different PPI's for stomach changes, reflux, etc. and now on Nexium, the finding out the main problem 6 years ago was gastroparesis caused by a pain medication. Instead of a pacemaker, I tried a "newly" approved drug for the pyloric muscle of the lower stomach, botox, placed in 3 places to keep the muscle open a little so food could continually be released into the small intestine. The erythromycin in a low dose is a prokinetic, making the nerves contract the stomach muscles but, wasn't working. Still use 4x/day. This way no food collected in the stomach being able to "rot" causing sepsis, and decreased daily nausea and vomiting. I still can only eat small amounts and is more liquid or soft medicine/foods. My appetite isn't the best. I often have reflux, bloating, constipation and hoarseness. But it has been 3 yrs since botox to my stomach and it is working. I take my blessing where I can. I hope this helpe others.
Also, my diet had to change to rapidly digesting foods like white bread and not the "good" eating I was doing like whole wheat or 21 grain bread ( was laying on my stomach for hours), plus many vegetables and also many raw vegetables...a no no.
My daughter is going through so much of this and is an RN. Has Barrett's esophagitis, hiatal hernia, dysplasia, leaky gut syndrome i.e. and awaiting biopsies. Constant n/v, bloating,hoarseness, food in the throat like you in the chat.She is also an RN. On many "new" meds again.
It really can get to you especially when you work and have a very busy life like she does.
My best to all. Hope I could help someone.I understand your frustrations. It is wonderful having an understanding doctor that listens!

Joan

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Nanny23 | @nanny23 | Feb 4, 2020

In reply to @nanny23 "How did you find that out?" + (show)

I have neuropathy in my legs could I️ possibly have in my stomach also? Thank you so much for your reply

Darlia | @darlia | Feb 4, 2020

Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot use the Reglan as it is a bad drug in my opinion. I can tell you that it caused me to go into major depression in 2008

oldkarl | @oldkarl | Feb 4, 2020

In reply to @darlia "Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot..." + (show)

@nanny23 Any place you have nerves, with or without muscles.

Darlia | @darlia | Feb 4, 2020

In reply to @nanny23 "How did you find that out?" + (show)

@nanny23.. Hi. Same for me. My feet, legs, a little in my hands..it will progressively spread too. Our stomachs use nerves to digest our food. The nerves not working properly contribute to the outcome of Gastroparesis. For me, it is most likely caused by the FGFR3 ANTIBODY so I would not be idiopathic (meaning unknown cause). For until it was discovered that I have this overabundance of this bad antibody, I was told my reason for having Gastroparesis was unknown.
Darlia

Nanny23 | @nanny23 | Feb 4, 2020

In reply to @nanny23 "How did you find that out?" + (show)

What is FGFR3 antibody and how did they find out you have it? Does that mean you have an autoimmune disease causing this? Thanks for replying.

Darlia | @darlia | Feb 4, 2020

In reply to @nanny23 "How did you find that out?" + (show)

Hi @nanny23..Ihad blood work sent to the Washington University in St. Louis, MO by my neurologist. He contacted me when it came back about 5 wks later. He told me that it was positive for the FGFR3 antibody which is a bad antibody gene. He said there is no way to know how it became so high or when it started. It could have been from some trauma. I have had trauma most of my life so, that's going to remain a mystery I guess. Normal # should be less than 3,000 and mine is 14,000. So, without any other cause so far for the gastroparesis, it would be suspected that this is the cause. This antibody causes neuropathy. If you go to my post on the FGFR3 Antibody, you can read more about it. Be safe out there! Darlia

Darlia | @darlia | Feb 4, 2020

In reply to @nanny23 "How did you find that out?" + (show)

I do not believe that FGFR3 is caused by an autoimmune disorder. However, I DO have autoimmune disorders separate from the Peripheral Neuropathy.

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Feb 4, 2020

In reply to @darlia "Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot..." + (show)

Hi @darlia,

We have several discussions about gastroparesis which you may wish to view:

– Does anyone else out there have gastroparesis? https://connect.mayoclinic.org/discussion/hi-all-does-anyone-else-out-there-have-gastroparesis/
– GERD, gastroparesis, neurogenic bowel https://connect.mayoclinic.org/discussion/gerd-gastroparesis-neurogenic-bowel/
– Failed Nissen w/gastroparesis & possible MALs https://connect.mayoclinic.org/discussion/failed-nissen-wgastroparesis-possible-mals/

I'd like to invite @katmandoo @citygirlannie @faycarole @clemlaa @debnjay @galy @jlfisher56 @robatk17, to join this discussion and share their insights as well.

The Mayo Clinic link provided by @fourof5zs above, (thank you!) also has some great information about ongoing research and studies to investigate new medications to treat gastroparesis.

Katmandoo | @katmandoo | Feb 4, 2020

In reply to @darlia "Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot..." + (show)

I have idiopathic gastroparesis and am pre diabetic.

citygirlannie | @citygirlannie | Feb 4, 2020

In reply to @darlia "Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot..." + (show)

I was told I had gastroparesis after I had surgery for a hiatial hernia operation 3 years ago. I have taken too many medications to count. I've also tried every diet with no success. I was told my vegas nerve was damaged so my digestive system no longer works. I have learned to live with it. I have lost a lot of weight and I have no strength left. I hope you have better luck.