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.
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.
