IBD | Information | Ostomy
I decided to become a nurse when I was in high school. When I was 16, a year after my Crohn’s diagnosis, I had my first surgery, a temporary ileostomy with a j-pouch. The nurses that cared for me were some of the kindest human beings I could have ever met. I went straight from high school to nursing school and began my nursing career 15 years ago. In the past decade and a half, I have taken care of patients from many different walks of life in the Emergency Department, Surgery, and Pediatrics- which is where I found my passion. I had been in Pediatrics for 10 years, when I decided to go back to school to become a Pediatric Nurse Practitioner (PNP) For the past 5 years, I have been loving my job as a PNP, and really, apart from the occasional flare, I was pretty healthy. I got married, had a few kids, and loved working in a community pediatric office. In 2014, my j-pouch started to fail, and after a year of unsuccessful treatments, I had to yet another surgery, this time for a permanent ileostomy. At this point, I was very sick- at a university level hospital, in the ICU, in contact isolation (MRSA), in a lot of pain, and 3 hours away from my home. It was during this hospitalization, that I learned that so many of the habits I had picked up as a provider were not helpful, not compassionate, and needed to change. I’d like to share those with you today.
You can learn more listening to a patient than you can in a brief in office assessment. In my practice, appointments are scheduled in 15 minute increments, which mean that I have just a few minutes to get a patient’s story, look them over, and decide how to treat them. In the months I was experiencing pouch failure, I had many appointments with various doctors. I couldn’t eat much, had severe stomach pain, extreme fatigue, nausea, and horrific diarrhea. I couldn’t always give them tangible symptoms; sometimes I just didn’t feel well. But it always seemed like on the days that I had appointments, I felt ok. Kind of like how when your car makes a funny noise, that stops when you arrive at the mechanic. I could tell by the questions I was being asked that the providers didn’t believe me, and didn’t know what to do. This lack of belief in what I was experiencing everyday was sobering. As a provider, I learned to take a patient’s experience as a huge part of the information needed to make a diagnosis. If a patient says they don’t feel well, then they aren’t well… and it may take me more than 15 minutes to figure out what I can do to help. The brief window of time that I have with them in my office may be the only time that day, that they feel ok. I need to slow down and listen carefully to my patients to really get a clear idea of what the big picture looks like.
No matter how old you are, no one likes anything to do with poop! Even as an adult who had been dealing with Crohn’s for over a decade, I dreaded the poop questions at my appointments. Sometimes, I can barely remember what I had for breakfast this morning, let alone every detail of my bowel movements. I also hated the collection process for various stool studies, let’s be honest, no one enjoys playing with poop. Last summer, my daughter was having some tummy troubles and saw a pediatric gastroenterologist. The look on her face as they began asking her the dreaded poop questions was one of sheer mortification. It only got worse, as they were explaining the stool collection processes for the various tests they were planning to run. This was quickly followed by poop jokes from her father, and some uncontrollable giggles. As a pediatric provider, I often deal with patients with poop issues, from diarrhea, to tummy bugs, and constipation. Suddenly, I became the poop investigator that I always dreaded at my own appointments. So, I started introducing my poop questions, “I know that no one likes to talk about poop, sometimes I have poop issues myself, and I hate talking about it, too… but for me to help you feel better, we have to talk about poop.” A sense of humor is helpful when working in pediatrics, especially when dealing with poop. I may have even kept a stuffed poop emoji on my desk for just such occasions. Also, as I previously mentioned, my memory isn’t what it used to be, between work, kids, etc. So, to help get accurate information, I ask my patients to keep a journal of their pooping habits, because as a provider I find that it can help me figure out the cause, and options for treatment. To this day, when I am having issues, I too, will keep a poop journal.
If you haven’t experienced it, don’t tell a patient what it will be like. When I worked as a bedside nurse in PICU, I used to tell patients all the time, “this won’t hurt, but it might be a little uncomfortable.” And I don’t know why I told them that! I was lying, I didn’t know, because I hadn’t experienced half of the things I was talking about. I have removed countless surgical drains (commonly referred to as JP drains) from patients- advising them to breathe deeply, assuring them that it wouldn’t hurt, but they may feel pressure. Well, let me tell you, after my last surgery I had two drains, and having them removed was horrible- very painful, and the pain lingered for hours. In fact, I had to be sedated to remove the 2nd one after experiencing removal of the first! Then there’s nasogastric (NG) tubes- I have had more than I care to remember during my battle with Crohn’s disease. NG tubes are a somewhat frequent occurrence in pediatrics, and my memories of them are anything but pleasant. So now, when I hear nurses say that it’s not a painful procedure and that it’s just a little uncomfortable, I question them about the last time they had one and share my history. I won’t intentionally lie to patients, so if I haven’t experienced it, I am honest. I have also learned the importance of doing what I can to help relieve pain and anxiety before and during painful procedures. During my last surgery, I found immense comfort in the presence of my husband. He didn’t have to do anything, just being able to see his eyes helped. So I try to explore what things my patient finds comforting, and try to accommodate that as much as possible.
It’s not always about a solution… It’s my experience as a patient that when I go to the doctor, it’s not always because I want to try a new treatment, medication, etc. Sometimes I just want to talk about what’s happening and be acknowledged. Maybe what I am experiencing is a normal occurrence for the disease process, but the symptoms are new to me. I just want to be told that what is happening is to be expected. As a provider, I realize that some things are common in certain diagnosis, but that they are not normal to the patient, and can be scary. While I have experienced a lot, I tell patients often, “That has never happened to me, but I can see how that would be frustrating/scary/upsetting!” There are some symptoms that can’t be treated, and things just need to run their course. I myself struggle with patience, so I sympathize with the patients who have a hard time adjusting to new symptoms or waiting for things to resolve. I try to be compassionate and an active listener. I will ask patients what I can do to help. For chronic conditions, as a patient and a provider, I find that there is a huge benefit to counseling. I am not currently in counseling but have been several times in the past decade. I believe it’s healthy to vent and beneficial to learn techniques for stress management and coping. It’s imperative to find a counselor that you can develop a good rapport with, and this may take a few appointments with different ones to find the right fit.
While sometimes I hate the fact that I have Crohn’s disease and I get very frustrated with the day to day struggles of living with an ileostomy, I truly believe that my experience as a patient has improved the quality of care I am able to provide. I am not a perfect provider, and I am certainly not always the best patient, but I like to think that my experience on both sides of the hospital bed has certainly helped- from both perspectives.
Charlotte Rensberger is from Battle Creek, Michigan. She has been battling Crohn’s disease since she was 16 years old and currently has a permanent ileostomy at age 36. She has been married for 13 years and her husband owns a beef jerky and chocolate store. They have two school aged children who keep them busy. Charlotte is a Pediatric Nurse Practitioner with 16 years of pediatric nursing experience. She currently works in a community hospital’s newborn nursery and loves her job! In her spare time, she bakes, re-finishes furniture, buys antiques, does crafts, ands sing with her church’s worship band. She started a Facebook page/blog in 2015 when she underwent permanent ileostomy surgery. During that time, she realized that she enjoys writing and finds it fun, relaxing, and therapeutic. Charlotte is happy to be featured as a guest blogger for Girls with Guts!
Very nice blog. I too have become a better provider since my diagnosis.
I’ve been a ER PA for 35 years and have been dealing with Crohns for the last 3 years.
Knowing what it’s like to have an invisible illness has definitely helped me at the bedside. I am a much better listener now
Thank you Charlotte for sharing some of your journey with Crohns. My granddaughter was diagnosed with it about a year and a half ago at the age of 25.