help, feeding tube ??

[Guest guest]

I have not been able to get on here in awhile. As you know I had an

ERCP April 25 and spent the week in the hospital came home on May 2

with a feeding tube. That all seemed to go well, in spite of the

pancreatitis it was the best hospital stay I have had. All the

nurses and doctors were wonderful and they were really attentive to

the pain. After a week and a half at home the tube got blocked and

I had to go to a closer hospital to get it taken care of as I could

have nothing by mouth. They ended up pulling the tube because they

couldn't get it unplugged they admitted me and put me on IV and put

calls into the docs that put the tube in. Finally 36 hours later my

doctor calls back. They ended up sending me home with home health

on IV for the weekend then on Monday I went back and had the tube

replaced. So far this one is working well. It is a week today. I

am still exhausted from doing much of anything. I have been trying

to get up and do a little more but even taking a shower wears me

out.

THE QUESTION IS: Just the end of the week I started having a

reaction to the medicines I am taking through the tube. I thought

it was the phenegren but then I had the same reaction to the

hydrocodone and then even to my zoloft. The home health nurse can't

figure it out and of course the doctors are not calling me back.

The only thing we can figure is maybe it is where the tube is

draining it is causing some kind of systemic reaction? Have any of

you had anything like this happen? I am trying to go without the

meds at all.

Also, I am feeling better with the tube in as far as getting the

nutrition I need and am worried about getting the calories I need to

when they take it out June 9. I have not been able to eat much at

all for such a long time I am afraid of how I am going to do when

they take it out and I am left having to eat to maintain my weight

and energy and all that. If any of you hav gone through this I would

love any suggustions or input you might have.

[Guest guest]

,

IMHO, one of the first things that you need to address is the lack of

care shown by this doctor who's suppossed to be treating you, but

isn't! A 36 hour wait to hear back from him when you've got a blocked

feeding tube and have to go to the ER is inexcusable.....as is waiting

for several days now to hear back from him about what sounds like an

allergic reaction to your meds. That type of care is substandard, and

there's really no excuse for it.

That's probably not the answer you were looking for, though, but I

won't apologize for my tirade about inattentive medical care, because

I think it's really important for the well being of the patient to

have good care from her/his physician. Your comment of " of course " ,

when talking about not hearing anything so far from the doctor, said

it all. You shouldn't have to accept this kind of treatment as though

it were expected and normal - you deserve better!

I'll get off my soapbox now and address the problem at hand. It isn't

your fault that your doctor's too busy to pay attention to you. I've

never had a feeding tube and can't really explain what might be

happening there, but your explaination does sound reasonable. The

person who has had feeding tubes and really knows all about them, and

has the medical background to explain what might be going on is

. Hopefully she'll see this post and step in with her

thoughts about what could be happening there.

Your concerns about what happens after the feeding tube is pulled are

valid ones, and you should ask your doctor for a referral to a good

nutritionist to see afterward. Many patients start out with daily

consumption of Peptamen, and you may need a script for this. Peptamen

is a pre-digested beverage that contains high quantities of vitamins,

minerals and medium chain triglycerides that are essential for weight

gain. It comes in a can like the product Ensure does, but is actually

much better, as the contents are pre-digested so they are easier for a

person with a sensitive digestive system to tolerate. It's the same

product that's often used in the hospital for tube feedings. If you

can tolerate Peptamen, it will help you put on your weight again.

Another suggestion is to take fish oil capsules each day. I used

those when I was attempting to regain the 30 pounds I'd lost during my

DKA, and they worked well. The nutrionist I saw also recommended that

I use powdered whey protein, which was sprinkled onto my food and

mixed into just about everything I cooked. I was able to buy a 24

ounce container of that at GNC, and it did help a lot. The

combination of all of this is what enabled me to get my weight back

when I needed to.

It's a shame that you aren't able to take your meds, and I do hope

that the doctor gets back with you to figure out a solution so that

you can. When you do get the tube out and start real food again, just

remember to give yourself plenty of time to regain. It took me a year

and a half, and admittedly, for the first several months I panicked

because there didn't seem to be any progress. It did come back,

though, within time, and yours should, too.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

www.pancassociation.org/anthology#Heidi.html

Bluffton, SC

SC State & SE Regional Representative

Pancreatitis Association, International

www.health.groups.yahoo.com/group/pancreatitis/

Note: All comments or advice are personal opinion only, and should

not be substituted for professional medical consultation.

[Guest guest]

Hi , I am sorry that you have been having such a hard time. I

do agree with Heidi that no doctor should have gone that long without

responding especially with all the problems that can possibly occur

with a NG tube. I cant really comment on your reaction because you

did not say what kind of reaction it was.

Keep up with the clear liquids but I would suggest that you get

something down that is of a better quality nutrtionally speaking.

Broth is just salty water. Heidis suggested a nutrionally drink,

that would be an excellent idea. the one she mentioned is a

prescription but there are some equally good ones out there that you

can get in a health food store or even at Walmart. You would

probably do well to dilute them and take it very slowly.

Well let me know what the reaction was and maybe I can think of

soemthing that might help. Sorry I haven't posted to you yet but I

have not been feeling very well. Oh and keep on paging those docs

until they call, page every 90 minutes until they finally call back.

Shoot they will call just to stop the paging. Sometimes docs can be

such a jerk.

Hope you feel better soon and you are in my thoughts and prayers.