Next step...

While I know every surgery is not perfect - I want to ask the group (specifically the DSers that had complications with nausea and vomiting), what my next step should be to improve my health and get better.

Had surgery April 22nd and now four months out - I have lost approximately 110 lbs.  I have been hospitalized for nausea and vomiting and now have a J-tube (I have had for over 4 weeks).

I have been on all of the anti-nausea meds and the only one that helps - insurance does not cover a full prescription.   I need Zofran (3x a day) - they give me 15 for a month.  Unless you meet their criteria (cancer) they will not fill full prescription.  I have appealed twice and lost.

I have been on all the others with complications (Reglan, the patch, etc.)

I vomit daily and still cannot eat.  I push fluids thru my J-tube and I try to eat at leat twice a day.

What should be my next step - I do not have the strength to keep this up for much longer.  The only perk - my periods have stopped (if you consider that a perk).

 

I am concerned (among other things) that you cannot even afford the Zofran that you need.  How will you afford all the vitamins and supplements and other potentially uninsured treatments you will need over the course of a DS lifetime?

I was quoted that the Zofran out of pocket was $400 a month.  While I can afford it and my vitamins - I prefer to find one that the insurance company will cover.

Yikes. Insurance can be such a PITA. But y'know, if that's the only one that works and that's the only way you can get it, it will be worth the investment. You NEED to quit vomiting.

Maybe some other pharmacy might be able to get it a tiny *****eaper. Or maybe a cancer support forum might have ideas about how to get it cheaper online or something.

It's marvelous that you have a J tube. I'd like to suggest you communicate with Vitalady (in fact I will text her that you posted this thread) about what to put through the tube to get you into a better place nutritionally. You are getting into malnutrition land, here, so you need some very focused nutrition. She's been there done that. You can email her vitalady at vitalady dot com.

EN - you always have the best advice.  I am considering in the short term paying out of pocket for Zofran - right now we are going to try compazine again. 

I do have a pill crusher syringe - anything that I can get in will help.  I have lost about 50% of my hair so I am taking the Biotin daily.

One last question - I have to rinse my mouth about 4 times a day due to what I call "residue".  Probably due to not drinking by mouth much - is there anything other than rinsing that I can take to stop foamy saliva or residue?  I do not have thrush - just get deposits in my mouth frequently - which can also make me sick.

When I've gotten that in the past, what helped me was to sip a slightly acidic beverage. Think diluted lemonade. Straigh****er didn't cut the ick for me. I think that might be because we're slightly acidic maybe?

How much protein are you putting in that J tube?

90 mg every night via Jevity formula.

Uh, you do mean grams, yes? Just checking :-). Are you using an all-protein addition to the regular Jevity stuff? I'm only seeing full-nutrition products under that name online.

Remember, you are malabsorbing. If I were in your shoes and so malnourished, I'd be taking twice that much protein. Don't double that product though, because it is a full nutrition product. I would add a big chunk of supplemental protein as part whey isolate and part whey concentrate. (I happen to know that all-isolate products blow me up like a balloon, hence that choice.)

And the vitamins in that stuff? Might as well be taking nothing hon. Time to get on Vitalady's fixit plan.