Complex PTSD and Inflammatory Bowel Disease
I know this topic isn’t commonly talked about or even researched very much as far as I can tell but I want to write about it. I am not a physician or mental health professional of any kind so please understand that this article is about my experiences, thoughts, and feelings only.
Feeling a loss of dignity from Crohn's or UC
Crohn’s disease and ulcerative colitis patients often have to go through a lot of tests, procedures, have to be poked and prodded due to IV’s and blood drawings, and often feel like they lose their dignity given how invasive many of the things IBD patients have to go through are.
Enemas, accidents, ostomy leaks and other embarrassing moments can leave someone feeling very vulnerable; especially if the people surrounding them are not supportive. For example, while at a doctor’s appointment, my ostomy appliance was off and stool just started shooting out as I was lying on the table.
I purposely didn’t eat or drink that day because I thought that I could control this since I knew I had an appointment. Thankfully, the doctor couldn’t have handled it any better. He was warm, made me feel like it was no big deal, and just made a bad situation as easy as he could.
Coping with changes that come with surgery for UC
The surgeries that many IBD patients need to have really alter your GI tract - and life. And while it may have been a life saving, beneficial treatment option, it doesn’t negate the fact that when someone’s insides are being changed, it will impact them in some way, shape, or form.
I went from having a large intestine/colon, to a j-pouch and no colon, to a temporary ileostomy with my j-pouch still in, to my j-pouch, rectum and anus removed and still living with a temporary (aka loop) ileostomy, to having five Kock pouch surgeries, to having an end ileostomy.
That is a lot of change! And the back and forth between different ways of eliminating stool from the body does change for patients with severe Crohn’s disease or ulcerative colitis a decent amount. Obviously, this doesn’t apply to every IBD patient AT ALL.
Bad experiences in the hospital
Many people who suffer from severe inflammatory bowel disease are often frequent visitors of the hospital where everyone seems to want to measure stool output and ask a ton of questions about bowel habits (which is understandable, just not enjoyable to speak about.)
I have always referred to the hospital as a “torture chamber” because I constantly felt like I was a prisoner. Even if I could sign myself out against medical advice, I still needed to rely on other people to agree with me since I wasn’t able to drive home.
I never felt in control of my own body. I was tied to IVs, central lines (in your neck), PICC lines and could barely get out of bed. I even needed help in the bathroom, which is so embarrassing.
Lack of support from medical professionals
Not having a lot of ER doctors and other people in the medical profession believe you or understand what you are going through can make you feel even more like you are powerless to help yourself. It is an awful feeling.
I have been thinking about this for a while...
Post traumatic stress disorder (PTSD) and Crohn's/UC
I do know that some people who suffer from IBD also have been diagnosed with post traumatic stress disorder. I am one of those people. Finding the right therapist can take a lot of time and I have definitely taken a lot of steps to try and find the right one. I know I have a problem that something could possibly be done about it, know what that problem is and wanted to search for help to handle it.
Although I am not currently in therapy nor think it is the best thing for me now (we all know how much timing plays a role in these things,) I was surprised when Complex PTSD was mentioned to me by a couple of therapists because 1) I never really heard of it before and 2) I wasn’t sure what it was. The doctor also told me another term for it was “disorders of extreme stress not otherwise specified.”
This made me do a lot of research about C- PTSD and it made me realize that I absolutely suffer from this. And so do the majority of IBDers who were diagnosed with PTSD (I am guessing. Again, not a medical professional.) I personally think anyone with a chronic illness that requires frequent hospitalizations, life and body altering procedures, medications, and surgeries have the potential to develop Complex PTSD.
I wanted to write this article because it has been on my mind a lot and something I thought might be a good conversation starter among people in the community. I personally know how some of these symptoms can just wreak havoc and I always want people to know they aren’t alone.
They aren’t “crazy” but merely individuals who have had to put their body and mind through unimaginable situations and circumstances. It would be odd if there wasn’t some kind of reaction.
What is your comfort level disclosing your IBD to your employer?