Happy Colon

Gut Feelings

My Experience With…Parenteral Nutrition / A PICC Line

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.

The Basics

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.

Why?

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.

PICC Line Placement

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:

Me with my PICC line. I took this photo with my computer camera, which acts like a mirror; the line was in my left arm.

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.

Day-to-Day Life with 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 bags hung contain my PN solution.

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.

The Benefits

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.

Risks

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

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!

About these ads

5 comments on “My Experience With…Parenteral Nutrition / A PICC Line

  1. debhoadley2365
    April 29, 2012

    Roxanne,
    I saw your post shared on FB and just had to respond. First, you have done a wonderful job explaining the whole process and what it involves. I have a Hereditary Angioedema (HAE) a condition that requires frequent infusions, and I chose to have a port (portacath) so that I could self-infuse and be independent of going to the doctor’s office each time I had an episode. I had wonderful nurses at Brigham & Women’s Hospital in Boston (where my port was inserted) and prior to making my decisions, they had various patients show my their ports and talk about the procedure and what it was like.

    I must say, that all the talking in the world, did not prepare me for actually having the port inserted, and the realization that I was now going to have something foreign in my body for the unforeseeable future. It took me over 6 months to come to grips with this, both physically and mentally. I do wish that the people that I spoke to had given me a little more information and “warned” me of the pain and the emotional fallout of this procedure. However, I do think that when you reach a point in your medical condition where you either receive the treatment via a PICC line or a port, you are so happy that you block out all the pain that was experienced at the beginning of the journey.

    I do thank God everyday for providing me with medicine that I can infuse on my own when I need it. I know that without my port, I would not be able to live a “normal” life and work and be a mom to my daughter.

    I wish you all the best and will say prayers for you that God will continue to do His work to help you heal. I hope that you will be “infused” with good health and healing. Take good care of yourself.

    • clementineseason
      April 29, 2012

      wow, Deb, I had no idea. I just looked up both HAE and the portacath, and I can’t imagine what it must have been like to decide between the port and doctors visits, not to mention having the procedure itself, and those first months having the port in. Anything that’s not native to your body is scary, especially something that will need to stay for a long time or your whole life.

      When I was in the hospital and the doctors were pushing for surgery, I spoke to a couple women who had had the surgery, and one of them actually told me that she mourned for her colon after it was removed. I was grateful for her honesty, but you’re right that no amount of talking could prepare me for such a thing, I imagine.

      I’m so thankful I still have my colon and that I was able to manage my weight and nutrition with a PICC line, and I’m glad that the port is working out for you!

      I’m glad you got in touch! Hope you’re doing well at your new job.

      Roxanne

  2. Anonymous
    January 22, 2013

    Thanks for taking time to share the information – and your right, there isn’t much info online.

  3. Anonymous
    February 20, 2013

    Roxanne,

    Here we are coming up on a year since you first posted about your PICC and TPN experience and your post is helping another young Crohnie prepare for a similar experience. My son is 12 yrs old and is going through a tough patch. He had inched up to 70 lbs, but has dropped down to 64 lbs in only 3 weeks. Since G-J tube feeds and regular meals are not giving him the calories and nutrition he needs, his doctor wants to go the TPN route.

    I was online looking for information to help him understand and anticipate what is ahead when I found your blog. What a gift! I just wanted to take a moment to say thank you for taking the time to post your experience in a clear and relateable way. I plan to share this with him tomorrow. I know he will appreciate it.

    Thanks again!
    Cheryl

    • Rox
      February 21, 2013

      Hi Cheryl,

      I’m so glad that you found my post to be so helpful! For everything that’s on the internet, I was so surprised when I couldn’t find any good testimonials from IBDers who had had PICC lines before I chose to get one. TPN is a tough decision to make, along with all of the other decisions one has to make with IBD…

      Have you heard of Crohnology.com? It’s a website that was just started last year or the year before by someone with Crohn’s, and it’s a platform for people with IBD (or parents of kids with IBD) to track their health, rate different treatments, and connect with others with IBD either through wall posts, private messages, or through a questions and answer page. I wanted to tell you, specifically, about it because a woman posted the question once: “Is anyone else here the voice of a 12 year old? Wrestling with choices: drugs (to spur growth mode) versus the slower route of food.” I actually met the woman who asked that question in person, and she’s wonderful, and there were two other mothers speaking for their 12-year old sons who responded to that question. So if you want to connect with others for general IBD questions and specifically mothers navigating the same water you are, I definitely recommend Crohnology.

      Good luck, and let me know if you have any questions!
      -Roxanne

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Information

This entry was posted on April 28, 2012 by in My Experience With... and tagged , , , , , , .

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 40 other followers

%d bloggers like this: