? for Randy or anyone on TPN...

Randy, this past couple of weeks I've been told I need TPN. As a long time user, what should I expect
if I agree to this course of treatment?

Will it change my life to a big degree?

Is it worth it, considering all the risks?

I have to admit it worries me greatly, and although I've researched it, I would love some input from
someone who lives with it.

I know you haven't been feeling to great lately, so I'll wait for you to get back to me, when and if you can.

Many thanks, stay well my friend!!

Hi Ivy they were talking about 2 months. I have to admit when I research it, it really gives
you a case of the doom and gloom:(

Zanne, I was taken aback when they mentioned TPN again 2 weeks after surgery, simply because
surgery was done in hurry INSTEAD of TPN. He said my weight loss and overall state would benefit
from feeding.

I don't want to be in the hospital again, even for a short time. I know they can send a carer to your home
to help, but geez I just want to get on with my life, I want to have my grandkids back. I don't wanna be tied
up to a regime. But deep down I know I need the help. I'm not absorbing anything and that sucks

I feel I'm full of the I wants, like a spoiled brat. But I do look a mess, people are worrying about me, and
that hurts too. They keep telling me to eat, so on and so on, and I'm doing my best, but I guess my best isn't
good enough.

I'm sorry I'm sounding so pitiful. I keep telling myself it's early days, but that isn't working either. I plan on
seeing my PC tomorrow, maybe I need something to help me cope mentally, I think I'm going down a path
I don't wanna go down...

Thanks for your support, I guess if they keep suggesting TPN I'll take it, in the hopes it makes me somewhat
better... Thanks for being a friend x

Thanks so much Ivy. Should I have to, the decision will be easier to make :)

My sisters ,my husband and my son want me to eat more, I know they think it make everything ok
again, I've tried to explain, but they're a little blinkered. They see me losing so much weight, so to them
it's an easy fix. And to be honest, if I didn't have this DD, I would probably have the same mindset!!

I was on TPN for 2 1/2 - 3 months severall years ago - 2003 or so maybe?? Anyway, it was no big deal, didn't really "cramp my style" any and I wouldn't have a problem doing it again at all. I was on it at home 12 hours a day. I picked 8PM to 8AM as the most convenient hours for me.

The PICC line was set in my upper arm and threaded thru to near my heart via guided xray the first time. The second time they just xrayed after insertion to be sure it was in the right position. They just had to pull it back about a 1/2 inch. No more uncomfortable than a pick for a blood draw or IV insert.

I had a two "port" lumen (I think that it the right terminology). One "port" was used only for flushing and a weekly blood draw (to determine the TPN "recipe" for the next week) and the other for the TPN, flushing and any IV medications that might be needed. Hmmm. Maybe that is not quite right - seems to me it was one "port" for the "ins" and another port for the "out" (blood draw). Whatever.

They gave me a pole on wheels for the pump so I could get around the house as desired. And batteries and a back pack if I wanted to go out and about during feeding time. Which I did several times when I started too late at night and had an early appointment.

A home care nurse came to the house once a week (or as needed if we called, only had to once) to draw blood and flush the lines and change the dressing (sticky patch to hold the PICC line insert at site), temperature, blood pressure, etc. Two days later I would get my "meals" for the week delivered and any other supplies I needed.

Home health care checks to make sure you have enough refrigerator space for our TPN "meals" or a small portable one can be provided. The "meals" are pretty much complete, you may be given an injectable vitamin supplement or something to inject into your "meals". The meals are in plastic IV bags and look somewhat like milk in a bag.

The boxes the "meals" are shipped in are nice, sturdy boxes. I miss my supply of them! And the ice packs were great too! They came in handy in our coolers at the horse shows. We miss them as well.

I developed a low grade temp about half way thru and no time was wasted. I was ordered to the hospital later that day, the line was pulled, the tip cut off and cultured. I can't remember if I had to stay overnight and started on antibiotics or if I was started on the antibiotics and allowed to go home. No more than just the one day in hospital if that tho. There was an infection starting but we caught it early. Probably because I got careless about keeping the site scrupulously dry when showering.

It really is just no big deal or inconvenience. You arrange the schedule according to how many hours you need to be on it to fit your needs. My "need" was a 12 hour drip so I chose 8PM to 8AM.

hey.. well like as said. its a bit of a stressor at first, but you get used to it quickly.i dont see why you would have to go in the hospital for it at all. with the modern way its been used in the last dozen yeras ive been on, ,you can get a training nurse to instruct you in the basics. i would think they would not bother with teaching you to clean you line site and just have you come in once a week. your TPN should be sent to your home and you will be loaned a pump and taught how to use it. sure its scary at first thinking youll surely die if you do something wrong, but you wont. just follow the intructions and you should be fine.. they can get your recipe done for you that can gain you up to a few pounds a week and full of vitamins and supplements to help you heal from your surgery faster as well. dont worry .. if they want you to eat as well while on TPN, you can eat as normal. i eat while infusing and not infusing. if the goal is bowel rest you may be advised to stick to aliquid diet.

I have also been on TPN, for about a month. At first it seemed overwhelming to me, but in less than a week I was used to it and it did make me feel better. Less belly pain, I didn't have to worry about what to eat and I stopped losing weight.

I am struggling with eating and gaining weight right now and if I could I would go back on it.

I did mine at home. They had someone come to my house to teach me about the pump and how to administer and hook everything up. Then they delivered my new TPN each week and a nurse came once a week. I also did it just at night, unhooked in the morning and would have clear liquids during the day. At night I started to look forward to it because all the nutrients and calories without all the pooping really gave me more strength than I had in awhile, it definitely made me feel better.

Thanks Zanne. It does seem that we're all following the same path of late. I just know I can't deal with
this no more. Physically and emotionally I'm done. I really thought the surgery was gonna make me feel
so good, but as every day passes I'm getting worse!!

I'm seeing my primary tomorrow, I don't what or if there's anything she can do, but I need to talk to
a doctor, and my GI's appt is not until the 25th.

I feel like I'm losing my mind, not a good place to be. (((hugs)))

My TPN was strictly for weight gain w/no gut problems at the time so I could eat as normal. The TPN was my main nutrition and what I ate was additional. (((hugs)))