Gastroparesis - Problem w/Fluid Emptying Only - Need help with rare symptom / diagnosis

[YippeeKi YOW !!]

@Howard

I hope this equipment doesn't cost money, like when I get home and stuff. I thought I'd just be pouring beverages into a funnel or something. But it appears as though there's some high-tech equipment involved, or in this case, low-tech equipment that doesn't quite work the way it's supposed to.

This is just one of the reasons I was hesitant to enthusiastically endorse the J Tube that was being pushed at you so vocally from so many sides.

They're not cheap, they're high-maintenance, and with your white cell count so low (which now apparently has been improved) the possibility for infections and bacterial invasions seemed worthy of consideration.

I thought I'd just be pouring beverages into a funnel or something.

Like you, I thought that the J Tube would be for liquids only, which is what you weren;t processing. Food was going thru OK. You might mention this to your doctor.

I'm sure they'll fill you in on the care and maintenance, along with appropriate numbers to contact if something doesn't seem right with the mechanisms of the pump, etc. If they don't, make sure you or your LPW asks them.

And I'm sure everything'll be fine. Just ask questions if you're not sure of some aspects of the maintenance,
cleaning, sanitizing, etc., or of who you should contact in the event that something beyond your or your LPW's control goes awry.

 

[Judee]

They explained to me that "Boost" had whey protein concentrate, instead of isolate, so the thinking is that this whey product is broken down already and shouldn't cause me the same issues.

I do remember a study mentioned in this book from Case Adams who is a naturopath that talked about the isolate protein being better tolerated by dairy sensitive/allergic children.

I would be concerned about the other ingredients too though. If you are worried about it, I would ask them to find something else or use the baby foods that you know you can tolerate like someone else said.

 

[kangaSue]

Is there a reason why I would suddenly be able to tolerate milk ingredients or whey protein, just because it's not going directly into my stomach? Does that sound possible?

It's not necessarily the case that you are lactose intolerant as such. Gastroparesis can be a fickle beast and it may be that just as a food itself, your stomach doesn't like it and in bypassing the stomach with a j tube, can mean you could tolerate it. That was the case for me.
Liquid Hope is one of the better tube feeding formulas around that is not loaded with cheap crap ingredients

 

[Judee]

Its always surprising to discover hospitals are so limited in: what is food. And with so many with dairy sensitivity, also surprising.

I agree. I had to bring food from home for my mom when she was in the hospital. There were only a very few things on the menu should could maybe safely eat.

 

[Howard]

Well, I'm an hour into my first tube feeding right now (almost 1 a.m., great timing), and I have bloating and gurgling in my small intestine, but I can't directly attribute it to the whey protein isolate. Although, that's what I suspect.

10 milliliters of Vital AF by Abbott per hour - plus a 45 milliliter flush, every hour on the hour.

A little bit of nausea, but not too bad... guess I have to prove it to the hospital staff that I'm allergic to milk protein and casein.

It's kind of a strange thing that people don't believe you when you tell them you're allergic or sensitive to certain things... but when people challenge me, I take that challenge.

I'm sometimes willing to suffer just to prove a point, but in this case, I'm not going to keep proving it all night long. I need some sleep eventually.

I wonder if I'm supposed to be sitting up while I'm doing this? I feel as though fluids are getting backed up. My nose is starting to run and burn.

 

[Hope4]

@Howard. I don't want you to suffer to prove a point in educating others. I hope they catch on to the truth very quickly.

I wish I knew enough that I could be there and stand up for you.

I am sending you good thoughts and great smiles.

God bless you in every way.

 

[Hope4]

Here is a link to a pdf of what is in Abbott Vital AF. I don't know if this is the one @Howard you are receiving.

There is a nutrient chart at that link. Eight ounces (237ml) contains 17.8g of protein, 12.8g of fat, and 26.2g of carbs.

Excerpt:

The ingredient list:

Liquid Vanilla:
Water, Corn Maltodextrin, Whey Protein Hydrolysate, Hydrolyzed Sodium Caseinate. Less than 2% of the Following: Structured lipid (Interesterified Marine Oil [Contains One or More of the Following: Anchovy, Cod, Menhaden, Pollack, Salmon, Sardine, Tuna] and Medium Chain Triglycerides), Medium- Chain Triglycerides, Canola Oil, Soy Oil, Short-Chain Fructooligosaccharides, Natural & Artificial Flavor, Cellulose Gel, DATEM, Magnesium Phosphate, Calcium Carbonate, Potassium Chloride, Sodium Phosphate, Potassium Citrate, Ascorbic Acid, Choline Chloride, Acesulfame Potassium, Carrageenan, Cellulose Gum, Calcium Phosphate, Sucralose, d-Alpha-Tocopheryl Acetate, L-Carnitine, Taurine, Magnesium Chloride, Zinc Sulfate, Ferrous Sulfate, Niacinamide, Calcium Pantothenate, Manganese Sulfate, Cupric Sulfate, Thiamine Chloride Hydrochloride, Pyridoxine Hydrochloride, Riboflavin, Vitamin A Palmitate, Folic Acid, Biotin, Chromium Chloride, Sodium Molybdate, Potassium Iodide, Sodium Selenate, Cyanocobalamin, Phylloquinone, and Vitamin D3.
Allergens: Contains milk ingredients.

 

[Howard]

I had the nurse turn it off. I've got fluid coming up my esophagus. Not sure what I should be doing here. She said she'd turn it back on at 3 a.m. she thinks the fluid should go back down on its own.

 

[Hope4]

@Howard Is there a sign on the wall which has the telephone number of the charge nurse (supervising nurse on duty)?

If the fluids do not go down and,

If you don't get results with the room nurse, the charge nurse can come to your room, and is authorized to get higher level help.

I am praying for success and sending you

 

[Howard]

Yes, I don't think I'm going to let them turn it back on at 3am. I don't know if that's the right decision, but I don't feel the fluid should be coming back up at this point.

Perhaps I'm angled the wrong way. Or all the CO2 gases in my abdominal cavity from the surgery are pushing the fluid into my stomach and up my esophagus. I literally have no idea what the problem is. I just don't think it's working properly at the moment.

However there are no feeding tube experts available in this moment to discuss my options.

Thanks

 

[Hope4]

@Howard. If you are not on one already, can the nurse put you on an IV of nutrients?

and

 

[YippeeKi YOW !!]

@Howard, @Hope4

I wonder if I'm supposed to be sitting up while I'm doing this? I feel as though fluids are getting backed up. My nose is starting to run and burn.

I quotd this message before I read further and my cmments were that NO, it should not be backing up your throat and irritating your nose, and you should call the nurse and stop the feeding.

Here is a link to a pdf of what is in Abbott Vital AF. I don't know if this is the one @Howard you are receiving.

@Hope4
Thank you so much for that. The ingredients are not great, certainly not any better than the OTC crap you can buy at any CVS...... Corn maltodextrin, sucralose, 2 forms of magnesium, and 8 or 9 kinds of glutamate can be really irritating and cause a lot of discomfort, especially to anyone who's sensitive to them. The vitamins are all in the least expensive, chemically produced lab forms, like the quality of the niacin enriched breakfast cereals. They're not always well processed or received by the body, and you;re fairly sensitive to several of them if I'm remembering right.

I don't know if that's the right decision, but I don't feel the fluid should be coming back up at this point.

No, YOU'RE ABSOLUTELY RIGHT !! Fluids not processing and backing up your esophagus was what you went to the hospital for i the first place. It should absolutely NOT be happening with a J Tube.

If you don't get results with the room nurse, the charge nurse can come to your room, and is authorized to get higher level help.

I know I've suggested the charge nurse to you before, maybe now that you've heard it from a second source you'll know that that's a real thing. @Hope4 is right: the charge nurse is the only one who can move this issue up to someone who can do smething about it, and who has the experience yo know that something's really really wrong with fluid backing up your throat.

However there are no feeding tube experts available in this moment to discuss my options.

You don;t know what they can make available should the need present. I'd ask for the charge nurse, but that's just me.

I'm really angry at the hospital right now, so I'll shut the eff up. @Hope4, thank you sooooo much for your caring and your input.

 

[YippeeKi YOW !!]

@Howard
If the charge nurse's phone or extension number isnt posted in your room (it should be), tell your nurse you need to speak with the charge nurse, and if she hasnt materialized in 15 minutes, ask again and emphasize NOW !!!

 

[Howard]

Slept 2 hours. If they come in again I'm going to ask for iv to be plugged in again. To get fluids going. So I can sleep.

I'm not going to leave these decisions up to the overnight shift.

Will talk to someone in the morning, and tell them I know what I'm feeling, and I recognize these or this sensation.

Maybe it's temporary.

okay then, they're stopping with the feeding tube for now and putting me back on the IV.

 

[Hope4]

@YippeeKi YOW !! Thank you for your help.

@Howard I hope you got a bit of rest.

Since it is week-end shift now, I will add my voice to @YippeeKi YOW !! 's voice that the charge nurse is the one who can actually help you this week-end.

At some hospitals, the sign on the wall also has a phone number for administrative/PR/Customer person. I have sometimes called that number, too, to get results, -- getting a doctor who knows enough and who has the authority to do something for you, now.

Also, if your attending physician at the hospital has an office number, it is worth calling that number.

If you have someone from home, or a good friend, who can be at the hospital with you, and stand up for you, doing this for you, it could help a lot. Going to the nurses' station, making phone calls, looking up information, etc., and being a help to you!

The patient shouldn't have to do the investigating and advocating alone.

Smiles and and all best thoughts to you.

 

[Shoshana]

I am hoping that you were able to get some sleep, @Howard

and that these things will work out, in some steps and transition time for you, to whatever is or becomes, your new normal.
The timing is difficult being the weekend,
but that is not an adequate excuse for anything/everything.
I hope you will not be feeling added stresses, to what is necessary.

I hope your wife will be visiting you today.
We are all rooting for you!

Shoshana

 

[Howard]

These are more or less notes to myself.


Weekend Update:

Slept a couple of hours. I'm okay. Taking IV fluids at 50 ml per hour now.

Whole body feels icky, poisoned and aching. Feel like diarrhea imminent, although it likely isn't.

650mg Tylenol in place Vicodin and blood pressure has been up - instead of 76 / 37 yesterday afternoon, I'm at 93 / 49 now early morning.

Pain less prominent, now localized in the tube insertion area. General soreness elsewhere, no big deal. Overall abdominal cavity bloating is lessening.

Now

Nurse on duty was here yesterday, smart guy, he'll handle this well… interacting with physicians by phone.

Explained to nurse that I just want to be able to get water into my body through my tube. Nutrition is just an added bonus. I am able to eat between 800 and 1000 calories per day as of right now and that's likely to increase as long as I can take on fluids non-orally.

Apparently 99% of all feeding fluids have milk ingredients, except the one mentioned above. So if I am to introduce nutrition through the tube, and assuming the mechanical process works, the ingredients of the feeding fluids will have to be simplified… the fewer ingredients the better.

I do not need extra nutrition, vitamin supplementation and all that kind of crap, as my overall numbers are okay (outside of weighing 87 lb). Considering my physical state, my electrolytes and vitamins are actually fairly decent due to my diet.


What I do need, is beneficial calories. And maybe some help with fats and protein. Carbs bad. Something within the Vitamin B complex causes heart palpitations.

Backing Up?

And I'm not sure why the fluids were backing up last night after the 45 mL of fluid dumped into my small intestine.

My stomach is always full a fluid still, so maybe it was an agitation thing? Maybe the sudden cold burst of 68 degree room temperature water caused spasming following the fluid dump? Is that even possible?

Or perhaps is GERD? No burning in my throat, no other symptoms in that regard, but who knows.

I need this to work, but I don't know what the problem is. When they initially used a syringe and squirted 60 mL of water into my feeding tube it did not cause any problems or notable sensations.

And once the drip reached my intestines I had slight bloating and gurgling, minor discomforts, but nothing over-the-top right away. It just felt as though I ate something disagreeable, nothing horrendous.

 

[Shoshana]

Another factor that is going on, @Howard is that your body is still processing all the meds/anesthesia , and your body's reactions to the "controlled trauma" as well, that you had during, and resulting from, the surgical procedure. So you would feel "icky" in some ways for a while from that, too.

 

[Howard]

@Shoshana thanks - I'm pretty sure that it is dairy related, I've had this icky stuff before... and in this instance it only started after the tube feed last night, well, this morning.

On the other hand, the anesthesia has definitely caused a weird slow down in my intestinal tract.

Surgeon just came in. She agrees fluids most important, nutrition secondary. Wants to start me on dextrose and water 10 mL per hour.

I have problems with simple sugars and high fructose corn syrup, so will this be a problem? That's what they're trying to determine.

 

[Shoshana]

Hi, @Howard
It's good to see you, here.

I definitely was NOT meaning that the dairy is not a problem for you.

I just meant as a separate and additional factor in your overall condition now, that you hadnt noted or mentioned, in your above summary of how you are doing,
is that you are still going through the overall reactions from the procedure, in addition to anything else of the issues. There's a longer recovery period from any procedure, I have noticed, than they tell you about, and we sometimes follow them in assuming that there is no recovery time, or no effects lingering from the onslaught of what our bodies were put through.

On the other hand, we would NOT want to assume that ALL of our aftermath condition, will just resolve in time on its own, and are all "JUST" part of recovering from the surgery.

You and the doctors, do need to now address the current concerns.

I was only adding some additional perspective, but none that would change anything for you or your treatments.

It's good to hear that the surgeon did come in. Especially on the weekend. There's a plus. We hope a big one.

Thinking of you!