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Crohn's and alexithymia

Hi,
Apparently I joined a while back when dealing with C Diff. but never did a proper introduction. I was diagnosed almost ten years ago and since then I have had a partial colecotomy, a handful of colonoscopies, numerous x-rays/cat scans, and enough variations on "we don't know what to tell you since Crohn's affects everyone differently" that the wonders of modern medicine has become lackluster. I've been on Remicade, Humira, azathioprine, and even prednisone when things get bad enough. For the most part I have been lucky with my symptoms and with having support from friends, family, and decent doctors.

The complication in my case, which I haven't found mentioned on these forums but hopefully others have experience with, is that I have alexithymia. In short it means an inability to identify and process emotions in myself. This isn't repression or buried emotions, rather the parts of the brain (including spontaneous imagination) dealing with emotion are completely cut off from the conscious mind. The body still reacts to emotions and stress, but since the brain can't process anything, it just sits around piling up until in manifests through Crohn's or something else.

Some studies have been done (I can post the links if there is any interest) showing that the effectiveness of any Crohn's treatment is dependent on how well the alexithymia is being addressed. Unfortunately, even the few psychologists/therapists/etc. that have heard of it are usually at a loss for how to address it since the vast majority of psychological treatments are based on working with emotions (useless in this case).

My hope is that there are others like me on this forum, and can pool what information is out there to find ways to better cope.
 
Your post is really interesting to me.

How long have you had alexithymia and how does it affect you in your daily life? How is alexithymia diagnosed?
Do you believe that alexithymia is the cause or trigger of your Crohn's? (Forgive me if I misunderstood.)
 
The diagnosis is generally done by a psych using one of a number of diagnostic tests (answering questions survey style, which correspond to a spot on scale). In practice, the mixture of weird ways that it manifests leads to searching for answers and an epiphany moment when everything fits. Alexithymia is similar to Crohn's in that it has a number of different causes. Some sources, like traumatic events, can be temporary, but if it is caused by genes or physical injury then it is permanent.

My case is the latter (genetic), so I've had it all my life. I should note that the DSM lists it as an extreme personality trait, not a disorder. It is hard to say how it affects daily life, except that I tend to avoid emotional or exciting situations in addition to the sort of things those with Crohn's avoid. Since the only manifestation of emotions is physical, it is hard to tell if a particular reaction is a genuine feeling or a symptom of a physical illness (it can take a couple of days to sort out even one of these).

I don't know if the alexithymia caused the the Crohn's, but I do know it is the biggest determining factor in terms of day-to-day health. Short of high dose Prednisone, the other medicine varies in effectiveness depending on how much stress there is at the time. Because of this, any treatment for this combination would focus on ways to handle stress and coping mechanisms for dealing with new situations.
 
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