Crohn's Disease

Crohn's 360: Jackie's Story Ep. 2: A Caregiver's Perspective 

Jackie's mother tells a story with a common theme among Crohn's patients: trouble receiving a correct diagnosis. Hear how she, as a mother and nurse, became a tireless, life-saving advocate for her daughter’s wellbeing. 

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Crohn's360:  Jackie's Story Episode 2

A Caregiver's Perspective 

Jackie’s Mom: I really didn’t put a medical diagnosis to it even though I am a Registered Nurse. I wasn’t thinking like that, I was thinking like a mother which was unfortunate because it put a little bit of a delay in my actual trusting that she knew what she was talking about.

Jackie: When we went to the first doctor Crohn’s at the time wasn’t the first thing on their minds. They thought maybe I was lactose intolerant, that I had Celiac Disease, or that I maybe just had Irritable Bowel Syndrome. They just kind of brushed it off like, “oh it is fine, just get over-the-counter medicine at CVS.” My mom was like, “No. There is something seriously wrong with her and you need to keep checking.” Thankfully my mom is a nurse so she really saw the symptoms and was like, “This is something and we have to really get you checked out.” My mom was persistent which I think pretty much saved my life.

Jackie’s Mom: I felt very ineffective. Here I am a professional and I am feeling very ineffective and trying to advocate for my own child. There was a point in time one night when Jackie was vomiting and had terrible diarrhea and was leaning over the toilet. It was the scene from – you can imagine it. She was crying and saying, “You’re a nurse. Can’t you help me?” It just stabbed me in the heart because here I am with all of these resources and I don’t know what to do. I don’t know how to direct her care because I need someone, a real professional who knows what to do.

It was years of hounding the doctors; years of saying, “no this is not a joke, this is not psychological, this is not a passing phase, this is not anorexia, not bulimia… “ They always put the catch phrase of, “maybe there’s some psychological things.” It wasn’t any of those things. It was really a medical thing happening and they treat the symptoms. They don’t really look to see what the cause is and that is what I have seen over a period of many years with her. I read everything I could find on the topics of gastro problems. Every friend and everybody I knew that had ever been sick – I talked, talked, talked and people came out of the woodwork with resources like, “Try this doctor. My cousin had this.” That was really networking and that was what really helped me. We were just lucky that we were persistent.

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