Many of my friends here online know I shout about my disease to the world. Very early on after ostomy surgery, the fear of what people thought of me subsided and I became very proud that I owned this bagged belly. I tell everyone… pretty much every friend, friend-of-a-friend, coworker, etc. knows I have this. It makes it much easier to explain the odd noises coming from my stomach this way.
You may wonder how I handle working with children (and parents of these children) being diagnosed with the same disease I have lived with for over 13 years. I feel as though I have great advice to share, especially when dealing with the consequences of Crohn’s – like tube feeding, ostomy care, medications, and scopes. But is it always appropriate to tell all?
I have seen many brand new diagnoses – and when I say brand new, I mean I am the one receiving the patient after they have recovered from a colonoscopy/endoscopy. They are usually still fairly sleepy, but the parents are wide awake after being told “the colon looks pretty bad, we are waiting for the biopsies, but we are pretty sure its Inflammatory Bowel Disease”. Some parents are not quite sure what this means, but others know exactly what this is and are stunned. I have held the hands of some of these parents and talked them through what to expect next.
These parents are scared (as is their child), but that does not always mean I share my own personal experiences. There have been a few parents who are terrified that their child will not have a normal life due to this disease, and I will share my story then. I will often tell them I have been living with this disease since the age of 11, and though I have had difficulties, I am able to be the nurse taking care of them that day. I often do not go into detail with my story though, because let’s be real, my story sounds scary. Telling someone who has never even heard of the disease that intestinal resections, ostomies, and chemo drugs may be in their child’s future is just too much to start with. As much as I want to educate a family on the disease, I also understand people’s breaking point.
I often have families and patient’s with a long-standing diagnosis of IBD – it isn’t new to them. They have come to our hospital because they are not sure what the next step is. Sometimes it is a child that isn’t able to get the right nutrition and our team recommends tube feeds or TPN. Sometimes it is a child with a severe disease process that medication just won’t recover, and a resection or ostomy is recommended. When families find out potential next options, I like to offer my time to chat with them, talking about my experience with IBD and how I can relate to their situation. If my day’s tasks allow, I try to spend time with the family for them to either ask questions or grieve out loud. When whatever next step is initiated, I try to assist in teaching them about tube feeding, ostomies, or central line/PICC care and give them tips I had learned caring for all of these on myself.
I feel so fortunate that something meant to bring me down has given me purpose. It was the nurses on the floor I now work on who inspired me to become a nurse. Watching them switch out my IV medications, set up my TPN, talk me through my ostomy care and encouraging me to be a real person again is why I am a real person again. I am hoping to pass on what they gave me to the patients I work with.