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kathyzendner

Ideopathic Gastroparesis - going downhill

Posted by @kathyzendner in Digestive Health, Jan 20, 2015

I am a new member. I always research Mayo Clinic for medical information. I was diagnosed with Ideopathic Gastroparesis 11/17/14 I am going downhill since diagnosis. I have lost 35 lbs. since mid Oct. 2014. I was barely tolerating any typical "Flu" clear liquid diet when first hospitalized. I have been in the hospital 4 times. I had a positive Gastric Emptying study on 12/14/14. My Gastroparesis diet has decreased from stage 1 diet to only tolerating Chamomile tea and occasional Jello, and plain Cream of Wheat. I was drinking 2-3 Boost Breezes per day (Peach only) for calories & minimal vitamins, 9 gms. protein. Now even that is causing me worsening nausea & diarrhea. I am a 61 year old Caucasian female, no diabetes. I am worried & scared. I am supposed to see a "GI Specialist" at my local VA hospital in 2 days. My immune system, endocrine system ( I am Hypothyroid), and Urinary tract (I also have Cystitis) cognitive function, and vision are all being compromised, as well as ongoing dehydration, malnutrition & electrolyte imbalances. I don't want to be hospitalized again. Last time was horrendous ! I came home with a positive Staph infection in my bladder. My Urologist doesn't know what to do about my cystitis as I can't tolerate any further antibiotics. Most doctors don't even know about Gastroparesis! I am beyond exhaustion, sleeping very erratic. I get up every day, clean house, cook, and continue to enjoy my pets, my grandchildren, and bird watching in spite of my ill health. I am homebound due this illness. Any thoughts, ideas, possible treatments, or info would be appreciated. Thank you in advance, Kathy

maxmaximus3

Posted by @maxmaximus3, Mon, Apr 18 at 11:06pm CST

Hello Kathy, My gastro paresis is from type one diabetes. I too struggle 24/7 with go. I have many other diabetes caused conditions that make it tough to function. I wish there were easy / simple manners in which to find relief. I believe that at some point in time, treatments will be possible. Just wish we could all not suffer all of the time. My prayers go to you. John Maxim

kathyzendner

Posted by @kathyzendner, Fri, May 6 at 1:54pm CST

Thank you John Maxim! Sorry for the delay! A lot has happened. I found out 11/2015 that I have Autonomic Neuropathy. This is affecting my entire body! It's getting so serious I recently moved back home to CA. for better medical care. I'm also a Veteran(US Navy) so a lot of my medical care is through the VA. I hope to be eventually referred to either UCSF in San Francisco, or Stanford Univ. My AN is in my GI system, my urinary tract, bones, joints, skin, it's spreading everywhere! I'm extremely sick! I'm afraid of losing my fingers and toes. I can't feel them at all. I also have serious balance issues. I was an athlete my entire life. Before a TBI in 1997 from a car accident, I used to run 3-4 miles every day and I worked for a Family Practice as a back office medical assist. for over 25 years. My AN started when I moved into a rental house 7 years ago. It's full of black mold everywhere! An Oregon Health Science University Neurologist finally put all the pieces of the puzzle together after a lot of testing, including Autonomic testing, which was positive. My stomach is paralyzed. My nerve and bone pain is terrible along with the tingling and loss of sensation. I have never had Diabetes. Thank you for your comments and prayers!

colleenyoung

Posted by @colleenyoung, Fri, May 6 at 4:25pm CST

@kathyzendner, wow a lot has happened. I just want to let you know that you can always share with members on Connect. You are not alone. You may like to join the conversations here:

Anyone here dealing with peripheral neuropathy? https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/
Chronic Pain group https://connect.mayoclinic.org/group/pain/

I hope you get the referral you want.

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