NORCALRN

please head to the ER...they can put ya on a heart monitor in jiffy......i know how you feel, go/not go/go,etc..... your family needs you around, and you need recuperative sleep and you cannot get that if you are worried. good sleep helps us heal...post later please!!!!! trish

I take Protonix RX for 6 months now. this is a new symptom....long history of complications. I am asymptomatic which is good and not at risk for esophogeal issues at this point. not eating - tube feeding, which my body is handling just fine. who knows?? it is just yucky.....(10# to go, but i might change it from 140 to 135 when i get healthy.)

For the last day or so, i cannot get rid of the taste of bile, even if i have not thrown up any. and nausea has returned. the NJ tube is patent, i just cannot stand this horrible taste!!! no left upper quadrant pain to indicate gallbladder issues..who knows. Anyone feedback would be great. sooo gross!!!

you have had quite a rough go...i can empathize that is for sure. i remember the TPN,PICC line being awful (diarrhea aaaalllllll the time) then j tube which was better. i know that those of us who had, or currently going through complications - well,it will get better. it just has to!!! My NJ tube stays til 2-25-13 then the J tube goes back in thankfully. keep us posted please!!! remember-you are amazing!!!

yeah, that cokeacola is our little secret when our patient's tube is clogged! thank you for your encouragement.....very helpful. I have an apt with my NUT 2-4-13 for my vit a def. (3 - too low for NJ out and J tube in). 2-25-13 is my next surgery date. Malnutrition sucks....the peptide Impact 1.5 is top notch and i already feel better. 15 hours at 70 ml/hour is my goal. not quite there yet plus 900 ml total of flushing. glad you are on the mend!!!!!!

morning. i had a jeujuostomy tube in the fall (out after 3 months) now my MD wants to place a NJ tube for malnutrition...I am not happy with that - would rather have another surgery even though it would be with general vs conscious sedation. my j tube was high maitenence but i got used to it. Anyone with feedback? i had a NG tube for 12 hours and i pulled it out (38 day hosp. stay for complications 3 weeks post op). i cannot fathom something like that for long term. Thank you.

I did not mean to irritate or confuse you. By your comment and icon, it appears that I have offended you. Just like any job, jargon, etc comes with the job. No offense was intended. Yes, "thank goodness" other nurses respond..the more education for all of us - the better. I have found the internet to have legit. websites that I can utilize when I do not understand something. Give it a try!!! Oh, and you can always ask the *poster* to clarify if your are confused. I do hope your journey is a healthy one!

oh and thanks to all for your comments and support. the gstroparesis (maybe vagus nerve was damaged?) - well, they have no idea what to tell me except that i will get better. that, i do believe!!!!!!!!!!!

i, too am a nurse. i had sooo many CT scans, trips to IR, and I def. had a splenic infacrt with a likely leak. the pus cultured strep and at one point, 5 ABX were hanging, but it was the Merapenin that eventually cleared the abcesses on the spleen, liver and the pneumonia. pleural effusion with empynema, well, NO fun. I also had adverse reaction from promethazine- TD which lasted 6.5 hours and was one of the worst things i have gone through. all limbs, neck, language involved. I felt it coming on and told my mom to go get my nurse. she did not know what to do...i had to tell her!!!!!!!!!!!!! it was awful. anyway, at least it went away cuz TD can show up and stay. I am lucky I guess. the NJ tube is getting more bearable, but cannot wait for 2-25-13....J tube replacement which i can handle without blinking an eye.3 weeks from tomorrow---i keep telling myself that!!!

Stephanie thank you so much for sharing your incredible journey. i thought mine was rough.38 days in with every complication possible. I was ok for about 3 weeks once my jtube fell out. already with the formula i am feeling better. dropped 2 # in a few days so my metabolism is getting better along with my strength. I keep re- reading your story and i am amazed at your strength. i will post thur after my consult with my surgeon. thanks again!!!!!! trish

hooray! i have my surgery consult this thurs for the replacement of my jejujostomy tube!!! :big sigh: so i should have this NJ tube out hopefully by 2-8-12 AT THE VERY LATEST!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

BTW, these next few weeks (max 2) better go by quickly. see specialist wed who then should give the ok for jejujostomy placement in the OR. i am taking tylenol every 4 hours which is terrible for kidneys. UGH!!!! just venting.......i give kudos to those who live with gastroparesis and tolerate NJ tubes.!!!

likely gastroparesis (my vagus nerve was likely cut during one of my surgeries). i am adapting to the formula as it is the same one i used before. i just want a surgery date for the jejuostomy tube ... i will feel better just having that on the books. this tube sucks. i am12 # away fro goal weight - might adjust it lower by 5 # when i get better. i look forward to cardio and weight training.... i really it!!!

ok, so here is the deal. i had the nasojejunum tube placed yesterday in IR....not as bad as i thought (way better than chest tubes and drains) but today my nose and my left face hurts. this is a temporary as i see the specialist wed and hopefully have an OR date for a jeujuostomy tube placed surgically like my last one. so i have to suck this up for about 2 weeks. i do not think i can handle much more than that. i bought a backpack and placed the bag, joey, syringes, alcohol wipes, etc so i can be on the go if i feel like it. not gonna feed during the night this time....will shoot for the 15 hours day time. yeah, the tube sucks, but i keep thinking temporary, and i know i will feel stronger and be able to socialize and beat this malnutrition thing. nice not to urp, vomit, etc.plus, with the 900cc of flushing, i can get hydrated even if i do not take much in orally. that said.....here's to protein and health!!!!!!!!!!!!! OH AND THANKS TO ALL FOR YOUR SUPPORT AND ENCOURAGEMENT!!!!

the inability to eat, drink. i urp or vomit fluids, food. regardless of what i et. when my jeujuostomy tube fell out my out my surgeon said the tract closed and since i was eating a bit - lets leave it out. i was so happy about it. in retrospect, thati was a huge mistake to not have it put back in. stupid of me. and my GI doctor emailed this am, i returned it with an update and have not heard from him since. i contacted the ombuddsman to help facilitate this as i will not have the NJ tube placed. i just will not. give me the surgery and i accept the risks of anesthesia, etc. i have 49 bags of impact 1.5 sitting here. my doctor said hang on to it cuz that is what he wants me to use (best stuff - on the market). anyway, i will go to patient relations if i have to........keep your encouragement coming plz, i am wearing down - so much easier to advocate for others than myself.

well, since its a NJ tube, not a NG tube, its done in interventional radiology...but i still do not want it.had a NG tube before, but i pulled it out after 12 hours. could not stand it. have placed several as a nurse, i always felt so bad for my patients. i am communicating with my GI MD this am, and not happy with the its going. my symptoms are returning to where they were when i was discharged and i am sooo tired all the time. should know more by the end of the day! thanks for your support!

I did go through this so i am very sorry to hear that you are suffering. I was getting better but i will likely have to have my feeding tube replaced. the pain, nausea and inability to eat or drink makes me feel terrible. bed-couch-bed. I hear ya! I suggest you go to the emergency dept in case you have a leak, infection, etc. I am not having an infectious process - just poor nutrition so my weight stalls super easy. i am 5"5 started at 205.5 surgery day and weigh in at 152ish. goal is 140. more important is that we get our nutrition. please go take care of yourself. the sooner the better. BTW, i still cannot drink water - makes me feel sick. good luck --keep us posted plz.

i had major complications - sleeved 7-24-12. spent 38 days in the hosp. i am currently waiting for a NJ tube or a jeujostomy tube surgically placed again. i "urp" up enough of what i try to take in so i am malnourished. usually with whatever i try to get down. sometimes a leak manifests with problems keeping anything down. watch for fever of course. regurgitation is an effortless process usually not accompanied by pain, nausea or bile. the fullness you are feeling should be checked out though. no reason not to....i want you to feel better!!!!! keep us posted!!!!

you could be regurgitating...does fluids come up efffortlessly? not vomiting-this feeling is different. is your sleeve on the smaller side? just some ideas...first check in with your doctor. endoscopy can rule out stenosis. hang in there!!! i know it is an awful feeling.

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!!!

i am queen of slime. i urp it up all the time due to gastroparesis. it comes up with any thing else that decides to shoot out. i don't even really vomit - just open muy mouth and out it comes. gross but my life right now. jpeg again maybe? will know more wed. oh, sleeved 7-24-12 and despite complications - 15 pounds to go!!!!!! the TPN and then the tube feedings slowed things down but i am ok with it. my weight is just all belly so jiggley! - and i need to tone - atrophy from extended hosp. stay....

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.

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

I just spoke with Heather -coordinator the other day. She was checking on me after i was solicited by them for feedback. I gave her my complicated journey that is still going on since sleeved 7-24-12 . Yes,.....no more recovery house and the Hotel Ticuan is utilized -suite 106. She said it is working out better. He does do a lot of surgeries. I was up first. lowest BMI-highest. I know someone did not go to the OR that day til 11pm!!!!!!!!!!!!! My post op issues are likely not his error, except he might have damaged my vagus nerve so i have gastroparesis...here comes another jpeg feeding tube likely! It would be helpful to pack your own pain meds and speak a bit of medical spanish!

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!!!!!!!!!!!!!!!!!!!!!