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TPN: I'm on it. I'm Liveblogging it.

Hi friends,
It seems like there is relatively scanty information on TPN compared to other types of treatment on this forum. I started mine maybe a week ago, so I opened this thread to serve as a catch-all for TPN discussion. Ravensfan88 has already provided great info and was such a godsend when I was researching! I hope this can be helpful.

Starting TPN: I've found doctors tend to pooh-pooh TPN since they are educated in drugs and very little else. They tried to send me to a dietician who tried to tell me to eat more peanut butter/coconut oil, and I wanted to bash my head against a wall.

TPN was more or less a nightmare to set up, since there are a lot of hoops to jump through. It requires a PICC line insertion which is not much more dramatic than a standard IV. Totally manageable. Then they set you up with a home health nurse and assign a dietician to monitor your case. A specialty pharmacy provides the TPN formula itself as well as the pump and supplies. Mine runs over a 12-hour period. For the first few days, the nurse had to draw my labs daily so that the dietician could adjust the formula for whatever I need (i.e. more potassium to correct a deficiency, more overall calories, etc.) Once the formula is stabilized, the nurse comes back once weekly to change the dressing on the PICC line and do follow-up labs.

Impressions: I'm gaining weight for the first time in over a year. That is HUGE. But weight gain, like any bodily change, isn't always comfortable: I'm hungry all the time, my skin aches for some reason, and I've had headaches here and there. I think most of these things are just adjusting to the physical stress of going from malnourished to well-fed in a matter of days. I expect this (and the hunger) to lessen as I reach equilibrium.

Sitting still for 12 hours is annoying. Nobody wants to stay in bed that long, and the pump/bag are portable, but not convenient. The TPN can be run over a shorter period, but it's my understanding that you have to start with longer runs and build a tolerance before cutting the time.

I've had Crohn's for seventeen years and am refractory to basically everything. TPN is helping me gain badly, badly needed weight. Despite the minor discomforts, I am a huge fan. Of course, there is a risk of infection, and you can't get the PICC line wet--this means showering gingerly, no swimming, and so on. Minor sacrifice.

I'll update this as time goes on! Please, anyone who has questions, feel free to post here or PM me.
I was on TPN for approximately 8 months when I had my temporary illeostomy. The only thing I can stress is to do whatever it takes to sanitize and use alcohol on everything everytime. My PICC line became infected 6 times during the duration and each time I had to spend right at a week in the hospital when they changed them out. Your immune system is already down and I took every precaution I could take and it still happened. Also don't let your home health care go a day longer changing your bandages. Even if it is 7 at night on Friday and they are running behind, tell them you aren't going anywhere. Hopefully you have a knowledgeable nurse. Good luck with it. How long are you expected to be on TPN for?
I went back ane re read your post, mine was 2009-2010. I do remember having to start longer then cutting back. I bought a mini fridge for the TPN, it would come at the beginning of the week and they would bring in boxes of bags and my saline and all my other stuff like needles, alcohol swabs and such. Make sure you ask for all the supplies you need and dont pay out of pocket. Insurance will pay for it and it is a pharmacy like any other and you can get pretty much anything and everything from bandages to caps for your pic lines when you are free and other stuff.

Hope I didnt scare you and I really hope and pray that you dont have anywhere near the problems I had, just wanted you to know that you need to just take time and do it right because any shortcuts will get you a first class ticket to the ER with an infection.
I just want to say you people are very strong I must be weak. I was on this for 1 week when I was diagnosed and I cried the who time begging them to remove the pic line of course no one told me what it was for and I was very ill and all that said was be great full I'm getting it now I understand the important's of the Eternal nutrition. At what point is it decided that you need it? Can you just ask for it is it possible to do it and have a full time job?

I'm juicing now looking to see if that helps


Well-known member
South Northants
I have often wondered about TPN. I've had elemental nutrition around 13 years now. I still have crohns from mouth down through and wish I could try it. I have a liquid feed pump for 20 hours per day, yes isn't it boring sitting or laying still for so long? I have to unhitch myself to get to the loo. There is no way I can carry a 5kg pump about with me as i'm a small female and very weak. Hope all goes well with you.
I was on TPN for a year in 2001. I set it up before bedtime, and had it done in the morning so I didn't have to lug the pump around. Yes, it's a pain when you have to go, but I liked the roll around pump so I could take it with me instead of unhooking.

When I was on TPN, I was also on extremely high dose steroids, so between the two, I ended upnalmost 200 pounds. I'm 115 right now, do you can imagine what I looked like, huge moon face, and tons of water weight. I had a central line in my chest instead of a PICC line. Nothing by mouth for a year. All IV meds.

Thank goodness I'm a nurse, it was good not to have to learn how to do all that.

Anyway, back on TPN in the hospital last month, but only short term after my resection.

I think TPN can be an extremely effective tool in getting good nutrition or resting the bowel. I would not recommend it for the rest of our lives, just until we can eat enough. It was a real pain setting it up and keeping things clean and together. Not sure you could work much once on it without changing schedules to accommodate it.

Those are my thoughts. Good blog for those that might need this info!
I've been on TPN a handful of times over the years. I'm currently on it now and have been on it for a year. I have a port that is on the right side of my chest. I do all of the maintence like dressing changes and hooking up and inserting the needle.

My pump is super tiny so going places with it is super easy. I do hook up over night though and run it 10 hours 5 days a week. I also work full time Monday to Friday. I will say its not the easiest thing. I wouldn't call myself sick. I'm just not as healthy as a regular person. Sometimes it's rough because I have to be hooked up by 930 every night just to make it to work each morning.

I have no idea how long I'll be on TPN, but it seems to be the only thing that can maintain my weight. I'm allowed to eat while I'm on it too.