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Notes from the Hospital Bed | Care Team Successes and Failures | Episode Two

Laura Cox
Ostomy Lifestyle Specialist | Shield HealthCare
04/05/16  9:57 AM PST
Invisible Illness

As a patient advocate and public speaker I am lucky to get many opportunities to impact the way people see illness. Out of all of my talks I’ve given to groups of doctors, nurses and social workers over the last two years, this presentation is the one I believe is the most valuable. I do not speak about lifestyle topics in this presentation, but simply talk about my positive and not-so-positive experiences as a patient with a care team – successes and failures, if you will. My hope is to provide insight to the people who are responsible for the comfort of a person who is ill.

I truly believe storytelling is an effective way to elicit understanding and empathy. The following is a synopsis of this presentation. If any of these stories seem familiar or if you have stories to add, I would love to hear your experiences and input. Feel free to comment below!

Hospitalizations

Successes (bolded within the story)

I have had many incredible nurses and doctors work with me during my ten hospitalizations within the last six years. There have been so many positive interventions by the care team that I want to focus on the instances that most impacted my life.

My third hospitalization happened just six months after being diagnosed with Ulcerative Colitis. Pain medications became less and less effective as my disease progressed. One night my pain was exceptionally bad and I called the nurse to see if I could get more medication. She told me it wasn’t time yet, but she walked in my room and said, “Do you want to take a vacation?” I was confused, because I wasn’t even allowed to leave my floor! The nurse instructed me to close my eyes and she began to guide me through a meditation. She taught me how to slow my breath and to visualize an “escape” from the hospital and the pain. Six years later I still think about this nurse and how she taught me an extremely useful coping skill I use to this day.  I’m sure she’s forgotten me by now, but I will never forget her and the huge service she did for me by teaching me a useful way to cope with pain.

Fast forwarding a few years, and I found myself in an operating room waiting to be sedated for a drain insertion procedure. I have had so many colonoscopies and small procedures by now that my body built a tolerance to the Versed and fentanyl they use to sedate people. The nurse anesthetists gave me as much Versed and fentanyl they legally could, but I was still wide awake while the interventional radiologist drilled a hole into my abdomen. This experience is definitely in my top five as far as worst pain I’ve ever felt. I begged and begged the nurse to give me more sedation, but he gently held my hand and told me that if he did, there was a risk of cardiac arrest.  Instead, he asked, “How can I help you?” I asked him to distract me. He ended up telling me a story of his most recent vacation with his family. Although the pain was still extreme, my mind was distracted by his story. As he reached the end, the procedure was done. Just simply asking how he could help me, this nurse showed so much compassion. Sometimes the littlest things can help us get through tough situations.

A couple of months later I was hospitalized for an infection. I was put on the antibiotic Flagyl, which always makes me vomit. I have an ileostomy, and apparently some doctors that are not Gastroenterologists (GIs) or Colorectal surgeons believe vomiting when one has an ileostomy always means there’s a blockage. I knew I did not have a blockage because I still had normal output, I had no pain, and Flagyl has never failed to make me vomit. Every couple of hours a doctor would come in and try to get me to agree to an NG Tube, to suck out the fluid from my stomach and resolve the blockage. I kept refusing and telling them it was my reaction to the medication. Finally a nurse came in and asked “Why do you keep refusing the NG tube?” I explained to her that I knew I did not have a blockage and was only reacting to the medication. I asked her if she could talk to the doctor and convince him to put me on a different antibiotic. She was successful and they switched the Flagyl to Cipro. I immediately stopped vomiting and a couple of days later my leukocyte numbers were back down to normal. If it weren’t for the nurse who treated me like an expert of my own body, I may have had to endure some unnecessary pain due to an NG tube. I was so thankful that she helped me avoid this intervention. Now, if you aren’t 100% sure you’re correct, listen to what the doctors say! In this case, I had many experiences both with real blockages and the medication. I knew what both felt like. It’s important to be your own advocate, but it’s also important to make sure you are doing what’s best for your body. If I had truly needed the NG tube I would have accepted it the first time they suggested it.

Not-So-Successful

I go to a teaching hospital when I’m hospitalized. It is a fantastic place. I feel safe there and I know the students are getting a great education. That being said, mistakes happen! My very first hospitalization, a phlebotomy student came in and asked to draw my blood. I gave her consent. She stuck the needle in my arm and I felt a jolt of electricity that actually made me jump. She had hit a nerve. I was unable to move my arm without extreme nerve pain for the next 6 weeks (luckily one of my family friends is an Occupational therapist and gave me suggestions that seemed to help my healing process). I am a firm believer in education through experience, but after this experience, I decided to allow myself to not be a teaching tool and inform my doctors I do not want to have any students treat me.

The same hospital, a few hospitalizations later, a couple of med students were overseeing my care. My mom and I were waiting for them to come in as they were quietly discussing my case outside the door. I have a loop ileostomy and a j-pouch that is formed, but not in use. We overheard one of the med students say “I don’t really understand her anatomy.” This is not something a patient ever wants to hear from a person overseeing her case! My mom quickly went and explained my anatomy to him with a small whiteboard we bring every time I’m admitted to the hospital. The lesson here for med students and healthcare professionals is if you don’t completely understand the situation, please don’t be afraid to ask the patient to explain more – they will be glad that you’re trying to learn more about them.

I’ve saved the most negative impact for last. In my third hospitalization, I came in to the ER in a lot of pain. They rushed me to a CT to make sure my bowel wasn’t perforated. I was sent up to the floor and later that night a GI doctor on call came in and told me: “You need to know the difference between your IBD and your IBS. If you come in and claim you’re in so much pain, someone may end up taking your colon out when they don’t need to.” First of all, I’ve never been diagnosed with IBS. Secondly, as an 18-year-old girl, having a doctor discredit my pain was extremely detrimental to my mental health. I ended up responding by hiding how much pain I was in for the next couple of years (which is never a good thing). The next day my own GI came in a did a sigmoidoscopy and he said it was one of the “worst looking colons he’s ever seen.” They quickly started me on Remicade and 60 mg of Prednisone after a scope. It turned out my colon was extremely inflamed and my pain was justified. Having an experience like this made me feel like I couldn’t express my pain because people wouldn’t believe me. Six years later I am still working on acknowledging my pain instead of hiding it from medical professionals. This doctor made me feel shame. He insinuated that I was lying about my pain. Luckily, I have incredible parents and other doctors that believed me.

In short

Successes of my care team during hospitalizations were that the nurses taught me coping mechanisms I could use throughout my life with a chronic illness, showed incredible compassion during a painful time in my life and listened to me and regarded me as “an expert of my own body” as well as advocated for me.

Failure of the care team was just standard learning experiences for medical students, which I don’t blame them for at all! Instead of coming to the patient and asking her to explain her own anatomy, a medical student instead just stated he didn’t understand my anatomy (luckily we overheard him and could educate him). The worst failure of the care team was the doctor who made me feel guilty for expressing my pain and assumed I was lying before actually taking a look inside of me.

Laura Cox – Shield HealthCare

You can read my Notes from the Hospital Bed Part One here.

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My 89-year-old mother loves to swim but she has found that the pouch fills with water when she gets into the pool. What can we do to fix this?
Cathy
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4 Comments

  1. Debbie
    Posted April 30, 2016 at 2:20 pm PST

    Thank you for you comments. This will definitely help in my next assessment of ostomy patient.

  2. Posted May 4, 2016 at 9:13 am PST

    That’s great to hear! Thank you so much for your feedback!

  3. Christina Starkey
    Posted June 5, 2016 at 10:26 pm PST

    Thank you so much for your insight. My sister suffers from Ulcerative Collitis and has since she was 5. She had her colon removed when she was 15, but now suffers incontinence at night. So now she is going in for a 2 step surgery to create a “resivoir” to hold her stool at night. The first step requires an illeostomy. She is going in for the surgery next week. I am wondering how I could best support her during this experience. Any advice on helpful gifts to give her during her stay in the hospital?
    She too was accused of lying about her pain in the past and was also accused of being a drug addict. Then she insisted they take her to surgery and voila! She had an adhesion stuck around her ovary and it was actually twisting the ovary! You wonderful people who have to endure these trials are truly an inspiration to me.

  4. Posted August 15, 2016 at 2:25 pm PST

    You are such a sweet sister for wanting to know how to help! I think just supporting her and wanting to learn with her is so helpful! As for helpful gifts for hospital stays- I always love fuzzy socks with those no-slip ribs on the bottom (the hospital socks have never been comfy to me), nail polish or something of the sort for after surgery so she can do some self-care, dry shampoo was always a blessing when I didn’t feel well enough to shower, and anything that she can be entertained by while she’s bored in her hospital room.

    I’m so sorry she’s been accused of lying and addiction. It is so frustrating to not be helped when you truly need it. I wish you and her the best of luck!

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