Will I remain a mystery?

@hyrulewarrior - I’m so very glad you’re going to see Mayo. Congratulations for standing up to this idiot with your advocates with you and your questions prepared. I’m so very sorry you’ve wasted this time being so unwell on his watch. I’m angry on your behalf to hear your obvious medical problems have been ignored over weight and weed. Incredible.

Wishing you all the very best at Mayo! 🙏🙏😊😊 Well worth the travel time to get an excellent review of your case.

Pease do keep us updated. We would like to support you get the help you need. This thread is also a great inspiration to others who are being mistreated in the medical system about how to prepare and advocate for themselves.

You ARE awesome 🙌 😊

Have you been tested for diabetes? A major cause of gastroparesis. What meds are you on? Some anti psychotic drugs cause this. You mentioned a psychiatrist???? A GP can test your electrolytes by doing an CMP an electric panel and do a Hemoglobin A1C they will give indications of diabetes or not on you. Diabetes is a major cause of gastroparesis. Also have your liver enzymes checked. Could be your gallbladder, you could have stones blocking drainage of bile into the duct of your small intestine and if blocked will cause inflammation and auto digestion in the gallbladder causing pain and nausea and vomiting. Were you over weight to begin with? He or she can also run other basic labs to check for deficiencies. Of course chronic puking will cause low potassium. Not eating you may also be anemic… not good. Drink a rehydration sports drink. Hope you have had an EGD a test that looks into the esophagus and the stomach and the first part of the small intestine and a colonoscopy to check your colon and doMRI to check for obstruction in your intestinal tract or other issues that may cause vomiting or disease processes . There are other tests for slow GI motility you can do also. You will need a good GI Dr. Once diagnosed properly you can get the right treatment. Always start with the most obvious reasons first. A 100 pound weight loss is significant unless you are losing it purposefully with a healthy diet and exercise. Did you have any weight loss surgeries or other recent surgeries? Your not taking a semiglutide are you like ozempic? All causes of slow gut motility. That will cause slowing of your gut and nausea and vomiting. Look up all causes of slow gut motility so you will be able to be a good historian to your new GI Dr and he won’t miss anything. Also some drugs cause gastro paresis. When you go to the new GI Dr be sure to tell him everything med and supplement you take.

I am so very sorry for you. Dr.s are arrogant narcissists. I am so glad your advocates were there for you. They must be wonderful people. If a Dr. sees psych meds, they will use it against you. There is a new drug for motility, called Motegrity. I have used it 2x, the headaches were worse than the CIC. So I don't know if it works. Back to motility...smooth muscles are part of the problem as well as the autonomic nervous system. My ex-GI had the gall to tell me he doesn't work with the ANS... I was so dumbfounded that I said, ok and hung up the phone. Have you tried Linzess, Amitiza, or Trulance? Look them up. I have been on all of them, they were useless for me.

I’ve been on so very lucky. I have a wonderful cutting edge medical team. I was diagnosed with stage 4 appendix cancer in 2021 with a 14-% chance of living 2 years. Here I am!. Yes 2 major major surgeries and chemo and immunotherapy later, that have affected my digestives system.

Msny fellow cancer warriors I know use medical cannabis to deal with their pain relief.

So very important to get a professional medical team who understand and who do their very best for you. I’ve been so lucky. There ARE good ones in the system. Find them 😊🙌

Please let me know what you find out at Mayo and if they really helped you.

Sending you the biggest fucking hug you can imagine!!! So sorry to hear your story…

Consider asking your endocrinologist about neuroendocrine tumors. These are rare tumors which can produce various hormones depending on the tumor. Some of these are caused by a genetic disorder (called MENS-1). I am dealing with a gastinoma (tumor which produces gastrin, the hormome that triggers the release of gastic acid). This excess gastric acid has the effect of breaking down digestive enzymes which affect bowel movements and regularity as well as creating gerd-like symptoms.

I only share this because NETs are rare but manifest in difficult to explain digestive symptoms. Also the genetic component could help explain why such early onset.

Continue to advocate for yourself and don’t ever stop questioning your doctors. Remember that doctors are no different than any other profession and they are just people who studied a particular subject. Not all of them are good communicators. Not all of them are good listeners and not all of them are willing to admit when they don’t understand what is going on. Try to remain patient. Continue to have advocates with you. And realize when it is time to find a different doctor. Good luck and Godspeed! …and sending another hug!!!

Have you ever been tested for Addison's disease that can give you bad a stomach cramps and make you throw up and make you lose a lot of weight your pac can test you for Addison's disease and that it goes under the. That is a blood test to test your adrenal glands and that can make your stomach cramp and make you lose weight. And you lose a lot of potassium with that. Number two I have you ever been tested for h h pylori h pylori. Your pac can test you for that too you can do a breathing test for that too. Can cause you to have a lot of stomach issues and lose a lot of weight and throw up too and cause a lot of stomach pain best of luck. If you have h pylori you got to take there's a course of antibiotics you need to take for adrenal and significance see our Addison's disease your doctor pac can refer you over to endocrinology and then they can start you on hydrocortisone. 🙏🙏🤔🤔🤔😇😇

You have been subjected to cruelty and medical malpractice! There are drugs that promote peristalsis for the Gastro paresis and a colonoscopy should show if you have a redundant, extra long, loopy colon, which is quite common and causes severe constipation. Surgery is sometimes required for that. You can be helped by the right doctor. I would absolutely recommend getting to the Mayo Clinic asap. Two simple blood tests can check your calcium level and if high a parathyroid hormone level. You have been treated horribly and I hope you get the help you need soon! Your current GI doc doesn’t deserve his title and should not be in practice! Bless you…

Please get online research Gastro Dr’s and read reviews. If you can get to a Hosp like Mayo Clinic in Jacksonville FL or MN or to a good Teaching hospital like UNC Chapel Hill , NC or New York Presbyterian or Johns Hopkins in Maryland? You def need a new Dr.
I’m 10 years in w/ over 7 diagnosed major chronic digestive disorders. On 6 yr Gastro , did the whole spectrum of everything. Still I’m suffering all day into night .
Now throwing up too and can barely eat ( yet o can’t lose weight). I think my body has been in starvation mode and storing fat .
You are so young!! I’m 62 abs this nightmare started 52 .
Keep trying to get a better GI Dr.
Where do you live ?
Are you under a lot of stress at home or work or college ?
Praying 🙏

Hi hyrulewarrior and Isadora,
Also, make sure you get copies of all labs done by both doctors, and their notes. Keep them. This way whoever you see in the future will already know what has been done. Always keep all test results and doctor’s notes on diagnoses.