Dec 2010 DS but still nauseated and can't take protein
Here's my humble opinion from my own experience:
I had severe problems with nausea and vomiting for about 7 months out of surgery. You can check my blog out for all the painful details. Essentially, I would vomit stomach acid vs. food. I had tons of food aversions, and no medication for nausea was helping. I had several tests, and they showed that my DS was functioning normally.
No one, including my surgeon, knew what to do. I didn't get any real help until I fell into protein nutrition. Then, I got put on TPN.
I found that I felt better the DAY I STARTED TPN. I could suddenly eat regular food like chicken drummies without feeling queasy and hurling.
Try to focus on getting your nutrition levels up by using your J-Tube to the max. I believe it will help your nausea and vomiting immensely. Once those are under control, you should be able to eat normally. It took me three months of being on TPN + eating a normal, full diet by mouth at the same time (something equivalent to about 4500 calories and 350 g of protein a day) to get my nutrition up to normal range.
As far as the protein shakes, it may take you a while before you're able to handle those if you've been puking and malnourished for this long. I know I couldn't really drink them until I had been on TPN for about two months. Prior to that, the whiff of whey smell would make me gag before I even drank them! No amount of nose-holding or top-covering tricks helped at all. Once I got nourished, I couldn't smell the whey and when I could, it didn't bother me as much. Ironically, I always liked the taste of shakes--I just couldn't stomach the smell.
The good news is that after having spent 3 months on TPN, I feel 101% better and have no problems with eating food or nausea, other than the battle I have with acid reflux/GERD.
If your DS is working properly, focusing on getting a good balance of anti-nausea meds and getting nourished 100% will help in the short and long run.
Get some local support from your PCP, gastro, endo and other types of doctors. They should be able to help you until you can find a DS doctor to work with you (and afterward). They can also do any kind of monitoring of TPN if you switch over to that, or need that after your J-tube.
I had severe problems with nausea and vomiting for about 7 months out of surgery. You can check my blog out for all the painful details. Essentially, I would vomit stomach acid vs. food. I had tons of food aversions, and no medication for nausea was helping. I had several tests, and they showed that my DS was functioning normally.
No one, including my surgeon, knew what to do. I didn't get any real help until I fell into protein nutrition. Then, I got put on TPN.
I found that I felt better the DAY I STARTED TPN. I could suddenly eat regular food like chicken drummies without feeling queasy and hurling.
Try to focus on getting your nutrition levels up by using your J-Tube to the max. I believe it will help your nausea and vomiting immensely. Once those are under control, you should be able to eat normally. It took me three months of being on TPN + eating a normal, full diet by mouth at the same time (something equivalent to about 4500 calories and 350 g of protein a day) to get my nutrition up to normal range.
As far as the protein shakes, it may take you a while before you're able to handle those if you've been puking and malnourished for this long. I know I couldn't really drink them until I had been on TPN for about two months. Prior to that, the whiff of whey smell would make me gag before I even drank them! No amount of nose-holding or top-covering tricks helped at all. Once I got nourished, I couldn't smell the whey and when I could, it didn't bother me as much. Ironically, I always liked the taste of shakes--I just couldn't stomach the smell.
The good news is that after having spent 3 months on TPN, I feel 101% better and have no problems with eating food or nausea, other than the battle I have with acid reflux/GERD.
If your DS is working properly, focusing on getting a good balance of anti-nausea meds and getting nourished 100% will help in the short and long run.
Get some local support from your PCP, gastro, endo and other types of doctors. They should be able to help you until you can find a DS doctor to work with you (and afterward). They can also do any kind of monitoring of TPN if you switch over to that, or need that after your J-tube.
Nicole Lab rata data link- One-half of a DS couple! - I'M BELOW GOAL!
http://bit.ly/DSExp After a very rough start it's official--I
my DS! Romans 8:28
Looking for DS information? Start at http://bit.ly/newDS and DSFacts.com
http://bit.ly/DSExp After a very rough start it's official--I
my DS! Romans 8:28 Looking for DS information? Start at http://bit.ly/newDS and DSFacts.com
Thanks for the response. You are just the second person who has updated that they were suffering from a similar situation. I was on TPN in May for about 3 weeks but ended up back in the hospital for 9 days fighting a raging infection. My Dr. pulled the TPN and refused to put it back in. He said infections with TPN are not a matter of if, they are a matter of when. He said he was afraid of what might happen if I got another infection in my depleted state.
My Dr's answer is simply "drink the protein shakes" and you will eventually get better. When I didn't and ended up in the hospital again in June for over 2 weeks we decided that was when the j-tube was going to have to be used. I have been on it for over a month now, bolusing pure protein (no tube feeding formulas though). I have been taking around 100 mg of protein per day. My nausea still persists. Even when I bolus the protein, I feel sick for about 45 min to an hour after taking it. Dizzy, weak, nauseous, my tummy sounds like it's going to explode, bubbling, gurggling, etc.
But I am slowly getting a little better. I am still weak as a kitten and can barely walk up stairs. I lose my balance and stagger around like a drunk. If it weren't so pathetic, it would be funny.
Oh well, the fact you and the other person *****sponded with their experience eventually got better, it gives me hope to keep up the good fight.
Thanks so much
Jacque
My Dr's answer is simply "drink the protein shakes" and you will eventually get better. When I didn't and ended up in the hospital again in June for over 2 weeks we decided that was when the j-tube was going to have to be used. I have been on it for over a month now, bolusing pure protein (no tube feeding formulas though). I have been taking around 100 mg of protein per day. My nausea still persists. Even when I bolus the protein, I feel sick for about 45 min to an hour after taking it. Dizzy, weak, nauseous, my tummy sounds like it's going to explode, bubbling, gurggling, etc.
But I am slowly getting a little better. I am still weak as a kitten and can barely walk up stairs. I lose my balance and stagger around like a drunk. If it weren't so pathetic, it would be funny.
Oh well, the fact you and the other person *****sponded with their experience eventually got better, it gives me hope to keep up the good fight.
Thanks so much
Jacque
Hi Gina,
TPN is total parenteral nutrition. It is being feed through a PICC line (IV tube) inserted directly into a large vein/artery in the chest or upper arm. The food is predigested and highly concentrated and is pumped directly into the vein via the IV tube). It means being tied to an IV pump 24/7. Infections are a very high risk and extremely likely sooner of later.
G-tube or gastric feeding is being fed through a g-tube inserted directly into the tummy and what I am on is a j-tube (jujostomy tube) inserted directly in to the small intestine by passing the tummy altogether.
My j-tube is a mess. The Dr. used a foley cath instead of a real j-tube. I leaks constantly and frequently goes on a flooding spree. You never know when it is going to flood through all the bandages and leak all over your clothes, staining them.
I have a call into the Dr. as we speak for an appointment so he can see what's going on.
Thanks
Jacque
TPN is total parenteral nutrition. It is being feed through a PICC line (IV tube) inserted directly into a large vein/artery in the chest or upper arm. The food is predigested and highly concentrated and is pumped directly into the vein via the IV tube). It means being tied to an IV pump 24/7. Infections are a very high risk and extremely likely sooner of later.
G-tube or gastric feeding is being fed through a g-tube inserted directly into the tummy and what I am on is a j-tube (jujostomy tube) inserted directly in to the small intestine by passing the tummy altogether.
My j-tube is a mess. The Dr. used a foley cath instead of a real j-tube. I leaks constantly and frequently goes on a flooding spree. You never know when it is going to flood through all the bandages and leak all over your clothes, staining them.
I have a call into the Dr. as we speak for an appointment so he can see what's going on.
Thanks
Jacque
PLEASE LISTEN TO PYCCA and go somewhere else. You need a REAL J TUBE. You are getting screwed over every single time you go back to Barker.
Jacque, several of the people who are responding to you on this thread are medical professionals of various stripes. They MUST be cir****pect in how they post to you because they are licensed. I am not, so I am being very forceful. I'm a good Samaritan, both legally and in intent.
You have been done wrong twenty seven different ways. PLEASE improve your care by getting the hell AWAY from Barker.
Jacque, several of the people who are responding to you on this thread are medical professionals of various stripes. They MUST be cir****pect in how they post to you because they are licensed. I am not, so I am being very forceful. I'm a good Samaritan, both legally and in intent.
You have been done wrong twenty seven different ways. PLEASE improve your care by getting the hell AWAY from Barker.
A stab in the dark - you can tolerate cottage cheese -... have you tried adding silken tofu and make a smoothie drink of sorts, strawberries and some yogurt and water? I have very few protein drinks that I like/can stomach. I get them in - barely. (I used to be able to drink them pre-op). I realize it's not the big bang of the protein drinks, but it IS protein and because it's not whey - one package isn't too much money. I'm going to try tofu just to see if it's something that I can use instead of some of the monkey butt protein drinks.
I also like my jello and 1 cup of cream cheese "mousse". I use the one cup of cream cheese instead of the cold water called for on the package. I beat it up like pudding and it's kinda like a layered mousse. 1 cup of cream cheese = 18 grams of protein.
Wish I could offer more suggestions. I'm new to this whole thing. :)
I also like my jello and 1 cup of cream cheese "mousse". I use the one cup of cream cheese instead of the cold water called for on the package. I beat it up like pudding and it's kinda like a layered mousse. 1 cup of cream cheese = 18 grams of protein.
Wish I could offer more suggestions. I'm new to this whole thing. :)
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