Complex PTSD and Inflammatory Bowel Disease

By Marisa Lauren Troy

4 min read

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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33ellend Member
Thank you for your article. Over the years I have gotten more and more touchy and sensitive. I still have a j-pouch which has been extremely difficult to live with. About a year ago, the inflammation that I was used to for 15 years, suddenly traveled deeper into my body. (From near my anal opening to deeper into my abdomen). Even after a year, I am still adjusting to the change. Then there's the poking and procedures and the IV meds. No wonder I am prickly! My childhood was very traumatic and I always thought my PTSD was from then. This article has helped me see how it may have been compounded by my present circumstances. I am so grateful that I am not alone in this.☺️
civey Member
Hi I have Crohn's for many years and been down that same road that you described. I definately think PTSD is a part of having this or any chronic health condition. I use Transendenral Meditation to help and it really works. I am also seeing a mental health professional and that helps too. People shouldn't suffer alone. They should be proactive and do whatever it takes to ease the suffering. I have also read that cannabis helps with PTSD and Crohn's. Charlie
prairigrl Member
No doubt. Beyond that, you have got to wonder what happens when you alter you microbiome that drastically. If, in fact, your vagus nerve reads your microbiome to discern how you brain/body should respond, what is it picking up. How can the body translate all those "gut feelings" without the bacteria, nerves, serotonin receptors that often go missing with severe Crohn's/Colitis, resulting in removal of so much intestine? And that's just a small part of the physical aspects of IBD. The emotional/mental strain is a whole other story, involving a medical system that rarely connects the mind and body, let alone treat the whole person. Failing in this most basic practice, Western medicine actually causes depersonalizations in their patients. Patients don't feel heard or understood, they feel like a subject rather than a person and are given little control over their fate. The system truly creates a sense of learned helplessness, if it hasn't already been instilled through the disease experience itself. So, yeah, without continuing to write an article here, it very much can and does lead to Complex Grief and PTSD, among other complications. The whole system needs an overhaul, in my opinion. However, as a Canadian, I am not so privileged that I don't realize it could be a lot worse. Still, I hope get to the point, where I can work to make it, even a bit, better. If only my body/mind will let me. Trying hard...
michael1963 Member
Thank you so much for your Post and the other comments. My son has suffered with IBD for six years and with so many surgical visits (planned and unplanned), medications, tests, etc., coupled with the body shame, added to the natural fear of the unknown, comparing into a normative peer that has no such challenges, all of this can and does lead, not surprising, to mental health issues. More needs to be done on treating the mental as well as the physical part of the disease, which in my opinion can be at least as challenging, and in some ways poses greater challenges and risks if left untreated, than the physical piece. The PTSD is the tsunami after the earthquake, it just might take a bit longer to manifest itself but they appear very much interrelated. Thank you for sharing your extraordinary stories.
1. Marisa Lauren Troy Moderator & Contributor
 Hi Michael! I am really sorry to hear all your son (and you) have gone through with IBD. I can completely understand and relate to all you shared in your comment. I can tell you are very insightful and in tuned to your son. Speaking from experience, having someone who really gets just how traumatic everything is makes such a difference. I am sure your son appreciates you very much. Thank you for taking the time to read and share some of your thoughts/experiences. It definitely helps to know I am not alone and that I should keep writing about topics that come up in my life; regardless if they are talked about a lot. Sending lots of love and support to you, your son and the rest of your family. We are always here for support!
thedancingcrohnie Moderator & Contributor
Marisa, Thank you so much for writing this article. It is so enlightening and informative. Unfortunately, not much is said about Mental Health and IBD and it makes total sense that those with IBD would suffer so much mentally since our disease is located in our "second brain," the gut. I know with my Crohn's diagnosis, I have suffered much with anxiety, depression and other mood swings due to all the chronic pain, the awful hospital visits, the feeling of not being heard and out of control, and dealing with side effects from drugs. It's a hard road but it's relieving to talk about it and knowing you aren't alone is comforting. I'm wishing you the best. Always dancing, Elizabeth (team member)
judyk89 Member
A good post, thank you. I am currently in therapy, diagnosed with extreme depression and anxiety. I have often wondered if it wasn't some form of PTSD. I cry at the drop of a hat, but it usually occurs when talking about my health issues as a Crohn's Disease patient. I cant seem to get through any Dr. appointment without crying especially. An entirely different kind of "white coat syndrome". Thank you for a differrent perspective, completely makes sense to me.
louiseanderson301 Member
Great article, I’m waiting for some counselling for anxiety issues all caused from my complex medical history. I have quite severe health anxiety as my diagnosis took so long and was so complex that I now think what if they’ve missed something else, I’m too tuned into my body as I had to be previously when waiting for my diagnosis. I truly believe we ought to start some form of campaign to make medical professionals more aware of the impact they have i people with ibd. I know my story is not unique and people have to fight to be heard or believed and it often takes years to get a diagnosis. It’s significantly impacted my life from a mental health perspective. You spend years feeling awful, doctors doubt you and have no idea what’s going on. You begin to doubt yourself and wonder if your going mad then when you finally get a diagnosis there is no apology or admission that they treated you poorly. The strangest thing is I felt relief when I was diagnosed as I knew something was wrong all along and I wasn’t going mad, how is it right that we should feel relief when being diagnosed with a debilitating life long disease! Thanks for posting this, let’s keep raising the issue so one day people with this disease won’t have to have the same experience as us and their voices will be heard xx
mamahansonga Member
Thanks for your post. It does help to read that you’re not alone. I agree that the way doctors and other healthcare professionals treat us is an important factor in effectively treating our disease and its mental effects. I’ve had gastroenterologists that ignore me, insult me and flat out refuse to believe me. I’ve also had those frequent hospital stays that strain my mental health. I always try to have a positive, thankful attitude when I have to relinquish my self care to a nurse. I’ve still been made to feel too needy or that I’m wasting their time. It is such a helpless feeling. My patience has frequently been tested during long waits for a soiled sheet change, an emptying of a bedpan or even a cup of water when I’m parched and thirsty. I know hospitals are often short-staffed and often nurses are working as quickly as possible, etc., but it sometimes does make the waits easy. There is a dehumanizing feeling that I’ve experienced. I’m glad I found this site as the articles and posts are informative and helpful.
CommunityMember583f1f Member
Thanks for the great article. As I read it I started thinking about one of my gastro way back in the day. She was doing research on the relationship between IBD/Crohn's and Complex PTSD. I remember she said that she believed CPTSD over time damages the vagus nerve which impacts the whole body. The vagus nerve is the longest nerve in the body it controls and regulates all critical body functions like digestion, heart rate, blood pressure, and the flight or fight response, etc. Thought-provoking. Of course, I forgot everything she had said until I read your article. It has been a life-long 60-plus-year journey for me to work through and treat the symptoms of CPTSD and bowel disease. Thanks for bringing this to the forefront. It is a topic that is worth exploring in more depth. 
1. christine.laaksonen Community Admin
 Thanks so much for commenting, <inline-mention username="CommunityMember583f1f" user-id="8657517"/>! It really is a very interesting topic, and it's great that this article rekindled the memory of your previous doctor and her research. I totally agree that it is a topic that is worth exploring! Wishing you a gentle evening. -- Warmly, Christine (Team Member)
2. Richard Faust Community Admin
 Hi <inline-mention username="CommunityMember583f1f" user-id="8657517"/>. It is very interesting that your doctor mentioned the vagus nerve in relation to complex PTSD. It turns out that there is a decent amount of research into how vagus nerve stimulation may reduce the symptoms of PTSD, for example see: <a href='https://www.psychologytoday.com/us/blog/the-athletes-way/202201/how-does-vagus-nerve-stimulation-reduce-ptsd-symptoms' target='_blank' rel='noopener noreferrer ugc'>https://www.psychologytoday.com/us/blog/the-athletes-way/202201/how-does-vagus-nerve-stimulation-reduce-ptsd-symptoms</a>. It makes one wonder if such treatment could be a benefit to those with chronic illnesses. Thanks for raising this interesting topic. Best, Richard (Team member)