Within the last year, I discovered that I have Complex PTSD as a result of childhood emotional neglect. My parents were satisfactory in taking care of my physical needs, but I was never shown that how I felt emotionally was relevant, let alone important. I've learned more about the havoc that this can wreck on the body, stress response, and immune system, and I now believe it was a huge contributor to the severity of my Crohn's Disease (tried and eventually failed all the typical treatments at the time, eventually resorting to a stem cell transplant). I would not be surprised to learn that the onset of my Crohn's was in response to my childhood conditions, but that's not my focus here.
I was diagnosed when I was 10 years old, and none of the plethora of doctors I saw ever took a few minutes to find out how I was doing mentally and emotionally. We know this disease is worse when under stress, but my family appeared "normal" so nobody ever asked to find out how much stress I was actually dealing with growing up, and so this took its toll alongside Crohn's. I was eventually referred to a psychiatrist (who I liked and was some help) when I was 18 or 19, but we still never got to the root of my childhood issues and their manifestations at the time. Cue stem cell transplant when I was 20 to save the day.
I can't help but wonder how severe my case would have been if my mental health had been taken as seriously as my physical health. Maybe I wouldn't have needed to try the more serious medications or resort to a stem cell transplant and I would have had a higher quality of life. For some anecdotal comparison, my older brother also has Crohn's. We were pretty similar with our disease courses, but his was not as severe and he is able to maintain remission on Humira. He had his flare ups during tougher times of his teenage years, but he also does not appear to be as burdened by CPTSD as I am.
I saw my GI's nurse a few months ago, and there was no explicit mention of trauma on their patient history; just the usual checkboxes for depression, anxiety, and the like. I'm really curious what your experiences have been like personally, and when you've dealt with doctors. Has anyone ever sat down with you and really checked in on your emotional and mental well-being? Was it a GI, or someone else? Have you noticed any changes over the years about how your doctors pay attention to mental health? It seems to me like it's puzzle piece that is far too important to get so little attention. Though they were bad, the worst of my Crohn's was not the physical symptoms. It was the mental and emotional experience, and the support I was offered for that was nearly non-existent. Really curious to read your experiences and thoughts!
I was diagnosed when I was 10 years old, and none of the plethora of doctors I saw ever took a few minutes to find out how I was doing mentally and emotionally. We know this disease is worse when under stress, but my family appeared "normal" so nobody ever asked to find out how much stress I was actually dealing with growing up, and so this took its toll alongside Crohn's. I was eventually referred to a psychiatrist (who I liked and was some help) when I was 18 or 19, but we still never got to the root of my childhood issues and their manifestations at the time. Cue stem cell transplant when I was 20 to save the day.
I can't help but wonder how severe my case would have been if my mental health had been taken as seriously as my physical health. Maybe I wouldn't have needed to try the more serious medications or resort to a stem cell transplant and I would have had a higher quality of life. For some anecdotal comparison, my older brother also has Crohn's. We were pretty similar with our disease courses, but his was not as severe and he is able to maintain remission on Humira. He had his flare ups during tougher times of his teenage years, but he also does not appear to be as burdened by CPTSD as I am.
I saw my GI's nurse a few months ago, and there was no explicit mention of trauma on their patient history; just the usual checkboxes for depression, anxiety, and the like. I'm really curious what your experiences have been like personally, and when you've dealt with doctors. Has anyone ever sat down with you and really checked in on your emotional and mental well-being? Was it a GI, or someone else? Have you noticed any changes over the years about how your doctors pay attention to mental health? It seems to me like it's puzzle piece that is far too important to get so little attention. Though they were bad, the worst of my Crohn's was not the physical symptoms. It was the mental and emotional experience, and the support I was offered for that was nearly non-existent. Really curious to read your experiences and thoughts!
