When I was considering a PICC line, and when it became clear I was getting one, I would certainly have appreciated reading testimonials from UC or Crohn’s patients on the subject but didn’t have any luck finding any online. I didn’t know much of what to expect with the insertion or care of the PICC line or how the PN would affect me, and the little that I did expect didn’t happen exactly as I thought. It was also difficult to wrap my mind around the idea of getting nutrition through a vein for an extended amount of time. But now that I’ve had a PICC line, received PN for about two months in a hospital, and am now free of this method of obtaining nutrition, I hope I can be a decent source of information for someone in the same position as I was.
A person receives parenteral nutrition (PN) when they’re not able to digest food well by means of their digestive tract or when they shouldn’t be putting food through the digestive tract. This is also called total parenteral nutrition (TPN) if it’s a person’s only source of food. PN is given through a type of IV line, called a peripherally inserted central catheter, or a PICC line. The “food” is in liquid form, and it is a very precise (and very expensive) mix of nutrients, not to be confused with an Ensure drink or a protein powder from the store that you mix with water. This is a prescription that is safe to go straight into your veins. (Well, the solution itself is safe in this respect – more about general PICC line safety later.)
While a regular IV line that you might get for fluids, anesthesia, medicine, or a blood transfusion is usually inserted on the lower half of your arm, the PICC line is inserted into a larger vein that won’t be irritated by the PN. They will probably find a spot on your upper arm to poke. And unlike a regular IV line which might last a week, the PICC line can potentially stay in for much longer.
I was put on PN for two reasons that go hand-in-hand with each other: weight and nutrition. Over the course of 7 months, I had lost 40 pounds – about a third of my healthy weight. This weight was dangerous, and about 10 pounds of what I lost occurred over the course of just two weeks, so there was no more time to lose – I entered the hospital just before Thanksgiving of 2011. I wasn’t eating much by this time because of a lack of appetite, but for much of the 6 months before this hospital visit, I was eating a decent amount, yet was still losing weight due to the inflammation. I was also suffering from malnutrition despite eating healthy.
One day of PN provided about 2000 calories and a healthy mix of necessary nutrients directly to my bloodstream. The colon isn’t where most nutrients are absorbed, so it’s not that I wasn’t absorbing nutrients; my doctor told me that the problem was that inflammation increases the rate at which your body burns calories, so I would absorb and then burn. That accounts for the weight loss, and a look at Wikipedia just now tells me that it also explains the malnutrition, since calories contain/are nutrients. This is where things get fuzzy for me – the relationship between calories, nutrients, weight loss, and malnutrition, but this article from Livestrong and the beginning of this article from UVA helped a bit.
With the PN, I could still eat food. With TPN, on the other hand, you don’t eat anything, and so your intestines get a break, which might help them heal. (I think TPN is more commonly used for Crohn’s than UC, as a sort of treatment rather than just to gain weight. One piece of research on that at PubMed.) My doctors didn’t see TPN as a good option for me.
First, a really short video explaining a PICC line from the Mayo Clinic.
The vein is found using an ultrasound machine. They checked both of my upper arms and marked two spots on each arm as candidates. I let them know that I preferred to have it placed in my left arm since I’m right handed. To place the line, they first put numbing cream on all four spots so that if the first choice didn’t work, they had all possible options prepared. I was given a “relaxer” – I forget if it was given orally or intravenously, but it was meant to calm me. It did more than that – I remember saying that their first poke hurt, but that’s the last I remember. The pain I felt was really not bad, though, and I was too spacey to really be affected by it at all.
When I woke up, the line was in and covered. It looked like this:
You can see here where the line goes in. The tape covering it is crucial to protect it from contamination, and the plastic piece snaps onto the piece beneath it, called a StatLock, keeping it firmly in place. The piece I’m holding is where it’s attached to a line for PN.
I started out being on PN for 24 hours a day, the fluid going in at a slow rate. Once I had a few days of that and was managing it fine, they put the drip at a faster rate for 18 hours. After a number of weeks, I was only on it for 12 hours a day. I was attached to this monster:
The bag on the left contained vitamins and minerals and was covered by a dark bag to protect the solution from light, which can alter the makeup of these nutrients. The smaller bag on the right contained lipids. Every day, the pharmacy sent up both of these, and a PN nutrition team reassessed the contents and concentrations of each weekly and adjusted the prescription as necessary.
Every week, a nurse changed the dressing on the line and cleaned the area around it. It’s a very sanitary procedure; both the nurse and I would put on masks, then she would take off the tape (the worst part), unclasp the line from the StatLock, remove the StatLock, clean the area with alcohol, change her gloves to special sanitized gloves, and then put a new StatLock and tape in place. I swear, you hardly breathe during this procedure. Some nurses actually get a bit nervous about it because it’s so important to not let the line pull out or get the area contaminated.
Every day, the cap of the PICC line must be changed. This is also a very sanitary procedure, although I found that some nurses are more conscientious of that fact than others. The piece that the cap covers could not even be touched by gloves – only alcohol wipes. It was a new standard to wear a mask during this procedure, but some nurses would just tell me to look away and not breathe on it. I started asking for a mask, though, to be completely safe; the last thing I needed was an infection! But this is a quick and easy thing to do, despite the precautions.
When taking a shower, I would have the area covered by plastic taped onto my arm, and I would keep my arm out of the water. Even if the cover seemed to be impenetrable, I always tried to keep it as dry as possible.
I feel like I was a little misled with PN. It sounded like I would gain weight quickly and steadily. Instead, my weight would go up a little, then it would go down for a bit, or be steady for awhile. In the end, though, it did help me end up with a net increase in weight. It was just a very frustrating thing to weigh myself every morning for two months and have no idea what the scale would say this time. It’s important to say that the period where I gained the most was when I began to eat more, once the herbs had kicked in, decreasing inflammation and giving me a better appetite.
Another benefit of the PN was not the PN, but the PICC line; instead of sticking me for bloodwork, they could take blood directly from the PICC line, and when I was getting blood taken twice a day, this was especially nice. My medicine could also be administered through the PICC line, which gave my IV lines a break, and for awhile I didn’t even have any IV lines in.
Deciding to place the PICC line was not a quick decision. We took into account the risks associated, and continued to be concerned about those risks until the line was safely out. For anyone, there is a risk of blood clotting and an infection, but I was at a higher risk for both. My platelet count was very high – over 1 million at its highest – meaning my blood was already more likely to clot. And because I had been on prednisone for so long and because of my weakened state, my immune system was already compromised. Before getting PN, we tried enteral nutrition – getting supplementary nutrition through a nasogastric feeding tube – but this was not effective. Because I needed to gain weight, whether or not I was to get surgery, and because this was the only option left to accomplish that, the doctors decided that it was worth the risks to put me on PN. Thankfully, I made it through without clots or infections.
Now, I just have a scar from the site, which is nothing. I’m so glad to be free of PN, to be able to gain weight on my own.
If you’d like to know anything more about my experience or would like clarification on anything I said, please comment below!