Gastroparesis A.K.A. Delayed Gastric Emptying...

[NORCALRN 60]

I had another endoscopy this am to rule out stenosis. negative. gastroparesis is what he came up with. emailed my doc at kaiser richmond ca.....hopefully he will come up with something. urping and vomiting all food and liquids for weeks. yes i have reflux but not symptomtic - taking protonix and carafate. my hair is falling out which i am not worried about. its lack of nutrition, energy, living in general. this sucks. i would even agree for my jpeg to be replaced and take formula which i still have cases of! as much as i hated the feeding tube....i would do it again but not sure if my MD i will agree, waiting for a response. so tired of urping barfing...i am not fun! i have always been compliant with post op food, etc. UGH!!!!!!!!!!!!!!!!!!!!!

[NORCALRN 60]

I had another endoscopy this am to rule out stenosis. negative. gastroparesis is what he came up with. emailed my doc at kaiser richmond ca.....hopefully he will come up with something. urping and vomiting all food and liquids for weeks. yes i have reflux but not symptomtic - taking protonix and carafate. my hair is falling out which i am not worried about. its lack of nutrition, energy, living in general. this sucks. i would even agree for my jpeg to be replaced and take formula which i still have cases of! as much as i hated the feeding tube....i would do it again but not sure if my MD i will agree, waiting for a response. so tired of urping barfing...i am not fun! i have always been compliant with post op food, etc. UGH!!!!!!!!!!!!!!!!!!!!!

My doctors are passing the buck on this one. i know i need my jpeg put back in. sooooo frustrated!!!!!!!!!!!! now i am waiting for my GI doc to email me back, as i lay here thinking how the heck can someone live without food and very limited fluids???? are they stupid???? i love kaiser but for the first time, i am very disappointed with my health care. :sigh: oh, anyone living with gastroparesis????feedback is welcome. thank you

[Queen In Me 36]

WOw...that's crazy! I got sleeved 1/3 and since surgery its been hard for me to take liquids. It sounds like you need an second opinion.

[christy38 17]

How's the reflux? I have GERD and want to get sleeves. So worried on making that decision...

[christy38 17]

Queen In me.. When you say it's hard for you to keep liquids down , what do you mean? Does it hurt drinking something or after you drink something you vomit? Or you feel like throwing up?

[NORCALRN 60]

i never have had gerd but have it very bad per many upper gi series. but i do not have any symptoms - taking protonix. i do have a phone apt with my GI doctor wed....so who knows what the outcome will be, gotta be better than this. its not that i am hungry - just weak from not being able to eat or drink much.

[iggychic 1,405]

My doctors are passing the buck on this one. i know i need my jpeg put back in. sooooo frustrated!!!!!!!!!!!! now i am waiting for my GI doc to email me back' date=' as i lay here thinking how the heck can someone live without food and very limited fluids???? are they stupid???? i love kaiser but for the first time, i am very disappointed with my health care. :sigh: oh, anyone living with gastroparesis????feedback is welcome. thank you[/quote']

I swore never to comment again but can't skip this one. Darling are you seeing a gastroenterologist? If not you need to see one asap! The first thing they will do is put you on a diet specific to delayed emptying. My son had it when he was born (premature) but our diet program was different because of his age. I did a quick search on a couple of sites we used to visit often when he was sick and found one with a sample diet for adults that is done in stages (which we also did). The stages help clear out your system and are important. The staged approach clears out the toxins in your body and prepares it for more advanced stages (sound familiar?). Sodas are included (gingerale) but we were told to flatten them prior to giving them to our son so I'm sure you can do the same.

There are medicines that stimulate the stomach which a gastroenterologist would or should have knowledge of. But typically you always go on the diet first. I know much of the diet isn't what we normally look to when sleeved, but for you, this is a life and death nutritional issue as malabsorption can quickly damage your body and it sounds like you're in that zone.

http://www.digestivediseaseny.com/nutrition/gastroparesis

There are other sites with diets you can also read if you google gastroparesis diet. Also google meds so you can be prepared when you meet with a doctor. I will say, given you mentioned your jpeg, that we did have one with DS for a period of time. They try to avoid them long term as they cause significant damage to the nasal passages in a pretty quick period of time. If your case is serious enough you may need one that is more permanent placed in your abdomen verses down through your nose.

Our son suffered immensely with this disorder so my heart goes out to you. On the bright side he is doing well. But his issue was an issue of prematurity so he will hopefully grow out of it eventually. It's much better every year, but he still gets to that point (which you are always at) when he is "full" and one tiny bit more will cause explosive vomiting. He takes it well, but it pains me every time.

Hopkins and ummmmm what's that great hospital system...starts with an M???? both had specialized programs for this disorder. We were always in the children's programs, but I do know of adults who did well after joining. Mayo...thats them You might need a referral if you aren't getting help where you are? I'm sorry you are dealing with this.

[iggychic 1,405]

BTW there is such a thing as "silent GERD" which is actually worse than typical GERD. The reason it's worse is that people don't know of the damage being caused by the acids until it's done a great deal of damage. (We had that too....we had it all LOL)

If you would now like a lecture on eosiniphilic esophagitis (probably not spelled that way) I can do that as well as atypical cystic fibrosis.....you name it, we wondered if it was the problem LOL

[NORCALRN 60]

I, too have a son (almost 21y) with special needs, living at home with me. Easter seals at 15 months....now is a few months away from his 21st! A very long, difficult journey. I am very well-versed on this gastroparesis. have a didatic memory in medical..(sailed through my BSN and nursing boards)..i am told I am not currently at risk for barretts esophagus, etc. My jpeg was placed under general and if I have another, i plan to request one with a bumper so i do not have to have weekly visits for stitching it down to the duoderm, etc. No NJ for me!!!!! You sound like an amazing mother. Your son is lucky to have you!!!!! My GI doctor i do like, he was very kind in correspondence, i am just angry that everything takes so long. If we decide on jpeg....I have my surgeon so at least that is good. I never have had a sweet tooth or drank soda, dislike chocoIate, so the only thing i kinda miss is cooking for fam and friends, a glass of wine. savory stuff. I still have 42 bags of Peptide Impact 1.5 - the supreme of formula sitting here. as much as i hated it, jpeg will be my choice i think. After my kaiser phone apt with my GI doc tomorrow, i see my outside doctor tht i have known for years that specilizes in WL, nutrition, etc. I have HIPAA on board with her and kaiser and she can advocate for me prn. its funny, cuz i am rarely hungry..thirsty - yes, but only hungry slightly in late afternoon but Protein Drink (35gm) sipping all day takes care of that. aannywwaayyy, i am so glad you contacted me....your insight is always welcome and appreciated. i will post an update wed nite. :sigh:...... hope you enjoy your day!!!

[Queen In Me 36]

Its not reflex, but gas from surgery. Its hard for me to get my liquids down because I don't have an appetitie and i'm just not hungry so thats why its so hard for me to get liquids down