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Jun 10, 2013 · Gastroparesis - gastric pacemaker doesn’t help! in Digestive Health

Did you get any help at Mayo? That was a couple of months ago and I’m hoping things are a little better.
Nothing is done yet about my esophagus/regurgitation, but they’re now calling it achalasia. I have noesophageal peristalsis, though I don’t have the high tone (the opposite) or failure to relax of the lower esophageal sphincter (and have severe reflux on top of the failure of peristalsis) that is supposed to be the other half of the achalasia diagow have a Groshong catheter to facilitate fluids (and chemo and blood work). Apparently TPN can be administered through it as well.
I hope you are at least somewhat better or at least have hope.

Apr 12, 2013 · Gastroparesis - gastric pacemaker doesn’t help! in Digestive Health

Hi. I’ve found that Zofran helps with the sensation of nausea, and so can help me be willing to try to eat. But it doesn’t seem to actually prevent vomiting for me. I find phenergan to be highly sedating, so it’s only for emergency use, if I’m willing and able to sleep it off. Zofran doesn’t affect me that way, so I’m willing to take it.
I’ve tried some Bolthouse Farms drinks in the past and really liked them. Too bad about the milk and whey, though (and soy isn’t so great for me either) — I can’t have the protein drinks. They look really good, though, and are corn free!

Apr 12, 2013 · Gastroparesis - gastric pacemaker doesn’t help! in Digestive Health

My local GI doc wants me to see a local surgeon to do a Nissen fundoplication (recommendation of the radiologist who did the barium swallow and saw the liquid riding the superhighway up to my throat and it only momentarily cleared by swallowing). But I have serious qualms given the gastroparesis: if food can’t go down, it’s got to go somewhere, right? I can barf stuff up from 6-8 hours before, if it decides not to go down and hasn’t already come up. There’s also a question of whether or not my polycystic liver is pressing on my stomach, pushing food up (if it doesn’t go down). So a fundo seems like it could be bad news.
I see a motility specialist in San Francisco May 1 and hope to begin to get some things sorted out. (My nephrologist was against getting a port or PICC due to infection risk and says “they need to fix the problem, not just accommodate it!” He thinks I probably need a liver resection to stop the pressure on my stomach.) So far, I’m getting by on 2x/wk i.v. fluids, limited oral fluid intake and whatever I manage to eat and keep down — which is more when it’s not competing for stomach space with liquids.
Did you have Roux-en-Y procedure for your gastrectomy? Whatever was done, I guess it wasn’t very successful if you still can’t keep anything down.
I have nitroglycerin tablets for the esophageal spasms. We tried a beta-blocker, but it didn’t seem to work and causes its own problems. I take baby tylenol (liquid) with the nitro to keep headaches at bay when I take it.
I’m guessing you have a J-tube and not a G-tube. When I barf for hours on end, a J-tube starts to seem more attractive than the status quo. (But I would have to make my own tube food, since all of the preps contain stuff that’s bad for me like cow milk and corn products.)
Please let me know about Mayo. I hope they are able to help you. (And I wonder if I should cut to the chase and go there to get someone to look at the whole picture.)
I send my best wishes to you.
T-girl (ps – I finally broke down and bought suspenders yesterday since I’m tired of hiking up my size 0 pants! You might relate….)

Mar 2, 2013 · Gastroparesis - gastric pacemaker doesn’t help! in Digestive Health

I, too, have gastroparesis. Also esophageal problems (which lead to immediate regurgitation on top of the delayed vomiting from the gastroparesis). I don’t have a lot to offer other than sympathy. So far. I was told by a GI specialist that the pacemakers haven’t lived up to their early promise and that when they do help, it’s usually for people with diabetic GP, which I don’t have.
I want to make sure that you’ve been tried on Donnatal. I didn’t tolerate Reglan, but this has been helpful for me. I don’t use the time-release version because it’s too sedating and doesn’t leave me a rescue remedy when I stay full despite having it on board. (I take 1/2 tablet w/ each “meal” and at bedtime, adding another 1/2 if I still feel too full more than an hour after having eaten.) It’s an off-label use (I think), but my primary supported my trying it — I had some at home from prior stomach trouble.
I also use Zofran for nausea. We tried it as a prophylactic, but I vomited anyway, so I went back to PRN.
All that said, I’ve been regurgitating and vomiting frequently for the past two months even with the Donnatal and Zofran, which used to keep me from doing so. I am receiving i.v. fluids on a regular basis to treat dehydration, so I don’t have the super dryness. I am expecting to get a PICC line soon to facilitate the i.v.s – my veins are getting cranky. Are you getting fluids? If you get a PICC line or a port, you can start TPN, right? And at least get enough nutrition and fluids to stay healthy until something else is figured out.
My best things to eat and keep down these days are: toast, banana, jello, and homemade bread pudding with some (nondairy, nonsoy) milk poured over it. For some reason, I also seem to be able to tolerate cream of asparagus soup made by first cooking some cut up fresh asparagus in water and then adding the condensed soup and enough “milk” to make it the right consistency. And a few plain, low fat crackers (like Trader Joe’s Pita Bites) or a few pretzel thins. Sometimes I can also get/keep down a small amount of goat cheese for protein. Cow milk and I are not on speaking terms, and commercial protein formulations don’t sit well with me, either. Thin/clear liquids often come right back up, bringing food along with them. I don’t know if any of this is useful to you, but hope there’s a morsel here, somewhere.
Best of luck to you.

Feb 7, 2013 · Polycystic Liver and Kidney Disease in Kidney & Bladder

Hi. I’m new to this discussion board. I have PKD (diagnosed long ago), and have recently learned that the numerous, small cysts in my liver have progressed to full-on PLD. I also have gastroparesis (delayed stomach emptying). With the gastroparesis, keeping weight on was already a struggle, but several weeks ago I began vomiting, and things are going south on me. Currently, my quite enlarged liver, in combination with my small frame, are suspects. Have any of you with PLD had daily vomiting, and if so, what treatments have been helpful? Also, is there anyone at Mayo who is particularly good with this sort of thing? I’m in a large town/small city where there is no special expertise.