Learning to manage a PICC or port can feel intimidating, but it can actually bring new freedom to life with IBD.
Living with inflammatory bowel disease (IBD) can be enough of a challenge on its own. But if you develop complications, as I did, the resulting surgeries can create new concerns for managing hydration and nutrition.
A common solution for these problems is directly infusing fluids and nutrients (known as parenteral nutrition) into the veins. However, standard IV (intravenous) equipment is not suitable for long-term use, so doctors often recommend using a central venous catheter (CVC) instead.
With a CVC, a long, thin, flexible tube is surgically inserted into a large vein, where it remains in place and is easily accessed for reuse. There’s no need to have a nurse locate your veins and insert a new IV each time you need hydration or nutrition. Once the device is placed, you can learn how to use it at home without the need to visit a hospital or treatment center.
While there are many types of CVCs, two kinds are most commonly used by people with IBD, and I’ve had both.
The first time I needed a central venous catheter, it was because I had a complex bowel resection to repair a fistula, a small bowel abscess, and a stricture. Afterward, my small bowel was shortened to the point that it was unable to absorb enough water via drinking and eating to keep me hydrated. As a result, I needed daily intravenous fluids and electrolytes.
A peripherally inserted central catheter, or PICC, can be used for several months, but not longer. My team believed that my remaining bowel might adapt over the course of those months to the point that I would no longer need supplemental hydration, so a PICC seemed like the best choice.
The procedure was quick and easy and was performed with just local anesthetic. I had to lie on my back so the nurse could insert the catheter into a peripheral vein in my upper arm, and thread it up the vein until it was near my heart. She and her team then used imaging to make sure it was in the correct place, and I was done.
Once the PICC was placed, about 2 inches of the tail of the catheter hung out of my arm. A clear dressing was placed over it, and then the nurses showed me how to attach it to a small plastic connector, which in turn attaches to the IV so that I could use it on my own at home.
After so many years of having IVs placed in the hospital, switching to at-home IVs was surreal and disorienting. Seeing an IV pole and pump, bags of fluids, saline flushes, and tubing taking over my living room drove home my new reality.
Eventually, I was able to reduce my fluid infusions to just weekly. So, the PICC was removed, and I began getting weekly treatments at my local hospital. But after about 4 years, the repetitive use of short-term IVs took a toll on my veins, leaving me bruised and in pain. I’d also had my share of ER visits, numerous medication changes, and dietary restrictions to help manage my ongoing hydration concerns. So, implanting a new CVC seemed to be the best option, but this time we used a different type, known as an implanted tunneled CVC, sometimes called a port, which can be used for years.
For this type of CVC, the placement was a bit more invasive.
I was sedated, and the medical team made two small incisions: one in my upper right chest, and one in my neck near my jugular vein. They then placed the port — a plastic, quarter-sized device — in my chest under the skin and connected it to the vein with a catheter, and closed both incisions with dissolvable stitches.
I was sent home with a dressing and instructions to keep the incisions clean and dry while they healed. They also gave me instructions on how to insert a special hollow needle, called a Huber, through my skin and into the port (called “accessing” the port) to deliver the fluids and nutrition I needed.
Afterward, no visible catheter hung out as it had with the PICC. Instead, there’s just a small bump in my chest under the skin where the port is.
The two types of CVCs I used vary a bit in terms of the maintenance they require.
A PICC line must be flushed daily with saline to keep the catheter free from obstructions and to help prevent blood clots from forming in it. A port also needs to be flushed with saline, but only after treatments, to remove any residue. Otherwise, there’s no daily maintenance when a port is not in use. If you’re receiving daily treatments, however, you can leave the Huber in the port for up to a week (covered with a sterile dressing), but you need to flush it daily with saline to prevent obstructions.
Because the PICC is outside the skin, it cannot get wet. So, I had to cover the PICC dressing and catheter line with a waterproof sleeve to shower, and I couldn’t swim. With the port, as long as I’m not actively using it, I can swim and shower like normal.
I had to learn the ins and outs of using both types of CVCs on my own at home.
The first time I had to start my IV at home with my PICC, I was incredibly anxious. When I was discharged, a home-care nurse was supposed to make sure I did my first infusion properly, but scheduling errors prevented that from happening. After several calls with the nursing company and my physician’s office, we decided I should try it on my own, using the teaching materials the hospital provided.
After so many years of having IVs placed in the hospital, switching to at-home IVs was surreal and disorienting. Seeing an IV pole and pump, bags of fluids, saline flushes, and tubing taking over my living room drove home my new reality. I looked at the checklist I received from the hospital, and searched online for a video of someone using the same IV pump I had. Then, despite my heart rate slightly increasing from my anxiety, I went through each step.
I opened the bag of fluids and connected it to the tubing. I primed the tubing, following the instructions on the sheet and video. I then took the cap off the end of the catheter and connected the primed tubing to it. Holding my breath, I pushed the button that started the IV. When it worked and I could feel the cold fluids in my catheter and see the pump working, I was giddy with relief.
Not all people with IBD choose to self-access their ports. Some people go to an infusion center or have nurses visit their home. I felt that learning to access my own port at home provided me with the greatest level of freedom and quality of life, as I can do it on my own schedule and without needing to travel.
The learning experience had more ups and downs than with the PICC. Inserting the Huber needle is like giving yourself an injection; however, you must find the center of the port by feel, and hold it in place with one hand while inserting the needle with the other. It took me multiple attempts with a home nurse the first time. Once I learned how to access it, I struggled at times with the anxiety of having a potential complication like an infection or clot. One of the important steps I took to manage this anxiety was using a peer-support community and talking about it during therapy.
Eventually, I found my quality of life greatly improved with the port. I can more easily visit family since I no longer need to be near an infusion center. And managing hydration during the heat of summer is much easier with a port than without one. I have orders for extra fluids during heat waves that I can manage at home in the evenings or on weekends without needing to go to an infusion center.
This summer, I am planning a beach vacation with my sister’s family that I would not have been able to do before having the port. Even though having a CVC adds some extra anxiety and challenges, my port has given me a quality of life that is not possible without it.
Central lines can be necessary for people with IBD who need specific therapies or who need regular venous access for hydration or nutrition. Managing a CVC at home requires learning a new skill set and adapting to a significant change in lifestyle and routine. Nevertheless, while CVCs can be intimidating, they can also be extraordinarily freeing.
Medically reviewed on January 25, 2023
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