Gastroparesis with severe symptoms!

The Mayo MN GI team is the best... While I have been in FL a lot.. I do not know of the reputation of the U of FL Shands hospital..a second opinion is always good.. but must be backed up with tests, data, and logic...

Thank you! Shands is one of the best in the world for pancreas transplants. Since my gastroenterologist here hasn't run any test's since I have had gastroparesis and chronic pancreatitis and I am so much worse I need someone who will do test's and procedures and explain why I am so much worse. My doctor gives me a celiac block every 2 months to my pancreas and does biopsies of my barrett's esophagus and esophagus. But I can't help but believe that my pancreatitis and gastroparesis and malabsorption and my thyroid and b12 are all connected to each other. I take b12 injection every week and thyroid medication daily. Now they found at Mayo in Jacksonville neurology that I have 2 types of neuropathy also. I need someone to be able to try to help me, not just keep giving me injections and tell me I'm at the end and done without even running some tests.

@bonez3861 .. the most telling test in my case was to eaten the standardized breakfast meal that the provide with a nuke tracer in it.. then they x-ray you each hour to see the rate of emptying of the stomach... ..mine took nearly 3 hours... ..that test was at Mayo MN.. my local GI and surgeon did other tests for 2 months while I lost 50 pounds

@bonez3861
Auto-correct did a job ... test was to eat the standardized breakfast meal they provide.. laced with a nuke tracer...

I have had that and several other tests in the past. They put me on a feeding tube and pump 10 year's ago. I feed into my small intestine. But with this and my chronic pancreatitis I don't know what is causing my sudden weight loss of 15 pounds. I have been this way for 3 months now and my body has nothing left but skin and bones. I just hope that they figure out what changed. I am dangerously thin. Plus my intestines keep cramping and my nausea is non stop. Zofran barley helps at all. Thank you!

I believe that I have, or believed that I had, gastroparasis, but despite that, my gastric empty test came back as negative, inconclusive...but this is what I learned, and what helped the most. First was electrolytes, one night drank some powdered mix and woke up the next morning, and drank some...primarilly potassium, because neurons need potassium and sodium, and we get plenty of sodium, but also magnesium, and my GI like woke up, giggling, gurgling, and within a very short time, my brain fog lifted, and then I sat on the can, and two little turds came out, I didn't know whether to laugh or cry, it had been so long, and later in the tub, little fart bubbles and I laughed like a little boy, things that had been frozen, constipated, stuck, started to move. Also, I have had some success with a tenz unit, sometimes the small of the back, both sides of my stomach, and tummy to small of the back, tenz either activates the vagus nerve, or frankly stimulates the muscles, but I suggest sstarting very low power, because if you have IBS, it can aggravate it and make the large bowel tie up in a tighter knot. Also hot tubs, hot to cold, and one other crazy thing that helped, was blue ice, held against my stomach, would shrink the bowels, and as they shrunk, that would push things down the track...any and all excercise, maybe the hardest, walking, water walking, even tai chi and yoga helps. One more, breathing, breah out, push your tummy in with fingers or arms, then breath in, expand your tummy, like make it bloat inhale, so that the bowels can expand, then exhale again, and make them squeeze, but also releax as much as possible, and that will sometimes get things to budge and move along, and have patience and faith, each budge, each move is progress. Another person in here, he does a lot with staying vertical, bed on a slant, and I also suggest if your body is in like a recliner chair, don't, stay vertical or at a slant, but don't have your tummy bent or crooked, if anything put a pillow under the small of your back, so that your bowels can stretch out, give them room. Criss cross that with child's pose from yoga, to expel the gas, then stretch out again...and stuff will move. do all of his, and cash bet, you'll have a fart, a gurgle, and a nice big poop, but make sure that you hydrate often and well. ..oops, one more, iron pills in like smalll dose 500 mg. and have them check your iron. Any and all labs, TSH, thyroid levels, but also if possible a CMP to check all them kinda electrolytes and see what's up. Good luck...

I have been taking senokot at night, then at 4 pm, cut off hours of no solid food.

Has anyone had luck finding a nutritionist who knows about gastroparesis? We were at Mayo Rochester and did not get to talk to the doctor until we had went home, thus did not ask for a referral to nutrition while there. I tried to reach out and get an appt with the nutritionist now and they won't schedule because we are out of state. We would have had to see them when we were there. I have had two nutritionists at home who knew nothing about gastroparesis and gave advice like "stop eating gluten." (about all I CAN eat is white bread and crackers - lol). I really with we would have been referred to nutrition while we were there. I have been eating so little for so long (and have some food aversion) that I am quite malnourished.

Go to the website
Aboutgastroparesis.org

Resources
Dieticians
If you put in your state you will find recommended nutritionists.

I met with a nutritionist at Mayo Clinic & I knew more than she did.. Actually I found out more online & focused groups than anything the nutritionist told me… Trial & error is very helpful…. I don’t eat anything fresh….everything is cooked…. I’m lactose intolerant per tests from Mayo…. I eat small frequent meals & walk after eating even when I’m miserable, because that’s when I need it the most…. Even 5 minutes of walking around the house can help….. I take gasx when needed & Zofran helps with bloating also…. I can eat eggs, fish, & ground meats are usually tolerated….. it seems to be the amount that’s the trigger for me…. I keep educating myself & that helps & a loving family that understands because of my eating habits. I eat ice cream or a wanna be for me like cashew ice cream…. But my biggest find for me was the walking….. I could not tolerate any meds except the Zofran that the gastroenterologist offered….God’s Best For You…..