Did you know that approximately 25% of people living with inflammatory bowel disease (IBD) report significant symptoms of post-traumatic stress (PTS)?
This PTS is directly related to disease experiences and related hospitalizations and is referred to as IBD-PTS. So what is IBD-PTS? It is when a patient experiences significant trauma related to the underlying condition and that trauma flashes back in the form of nightmares and unwanted memories. It may result in disturbed sleep, hypervigilance, and even low mood, including depression and anxiety.
Did you also know that there is a bidirectional relationship between IBD and depression and anxiety? This means declining mental health can contribute to disease activity, and IBD activity can also drive depression, anxiety, and PTS symptoms.
Certain racial and ethnic populations are at higher risk of IBD-PTS, including Black, Hispanic, and South Asian communities. South Asian people may be 5 times more likely to experience IBS-PTS than white and non-Hispanic people. This could be due to significant implicit bias, medical gaslighting, delays to care, and cultural stigma toward IBD.
Note: Implicit biases are unconscious stereotypes and prejudices toward certain people or groups. They may affect the decisions a healthcare professional makes about a person’s medical care. Medical gaslighting is when a person feels a doctor dismisses or downplays their health concerns.
What is post-traumatic stress?
People often talk about trauma and PTS, though it’s not widely understood what some examples are of what might cause PTS. I developed IBD-PTS from so many experiences, including:
- when the nurse practitioner jabbed my foot with the needle because she couldn’t get blood from my arm
- when I would vomit and poop blood day and night with the worst IBD flare-up
- when I had my leak after leak from my ostomy bag after surgery
- when I vomited 7 times back to back due to an ileus (shutdown of the intestines) after surgery
- when I was put in a salt water pool after surgery to clean a rectal wound and I screamed in horrific pain
- when I had a wound VAC in the side of my bottom to try to close a chronic wound after my j-pouch excised
- when I had fistula after fistula from the rectum to the vagina and from the anus to the backside violating my entire sense of self and entire womanhood
If that wasn’t difficult enough, as a South Asian American woman living with Crohn’s Disease and an ostomy bag, I faced significant cultural stigma. That cultural stigma was wrapped up in my IBD-PTS experiences. I was told I was not “marriage material” because I had this disease and that my partner of 2 years should leave me because “he deserved better.”
I was told that getting an ostomy was “disgusting, foul, and smelly” and that “only 80-year-olds get these kinds of medical devices to survive.” And then karma and the blame/shame game crept in. I was told, “you did this to yourself with the junk you ate, and this is your karma now to face this disease.”
Seeking mental health care
These stigmas toward the disease and my ostomy compounded the medical PTS I was already facing and made it even more difficult for me to cope and accept my condition. And these experiences, as difficult as they have been, needed to be talked about, understood, and dissected for me to process, grieve, and heal. Likewise, many IBD patients are experiencing similar situations and need the mental health support.
So how do we get back up on our feet after such traumatic experiences living with IBD?
- Talk with someone and share what you’re going through: Whether it’s a friend or a family member, I always feel lighter when I speak to someone who understands and is empathetic to my situation. Even joining social media and chatting with others with IBD, including patient advocates, makes me feel heard and seen.
- Speak to a mental health professional: Therapy really helped me during some of my toughest moments living with Crohn’s disease. Therapy helped normalize my feelings and gave me the vocabulary to advocate for myself. It also helped me understand that some of my experiences were heavily cultural and/or religious in nature and that I shouldn’t be ashamed or blame myself for the condition.
- Join a support group: Support groups were a game-changer for me. Even though I didn’t speak at all in the beginning, hearing others’ stories normalized my experience and made me feel like I too could share. It took a lot of courage, but I slowly began to share and made many new friends along the way. There are many online support groups you can join, including those run by the Crohn’s & Colitis Foundation, United Ostomy Associations of America, Girls With Guts, Color of Gastrointestinal Illnesses, as well as one run by my organization, South Asian IBD Alliance’s IBDesis Community.
- Journaling: As painful as it sometimes seems to write down our feelings, it can be cathartic as well. I remember taking a writing class where I began to write about my IBD and all my surgeries through various prompts the instructor would give us. Writing about all of this helped me release many emotions from fear to sadness and anger.
- Breathing exercises: Diaphragmatic breathing is something my pelvic floor physical therapist taught me, and it’s helped me a lot when I feel anxious or stressed. Learning how to do pranayama (an ancient Indian breathing technique) has also helped me feel more centered and balanced in times when I feel like my disease is running everything. Finding a breathing technique that works for you can be very helpful.
- Medication: There is nothing wrong with needing medication to help us get through tough times and stabilize. After taking anti-anxiety medications on and off throughout the ebbs and flows of my disease, my psychiatrist and I decided it might be best to keep me on a low dose of an antidepressant. It has worked wonders to help quell the anxiety and keep my mood positive.
All in all, we know mental health challenges living with IBD can be very difficult and daunting to deal with. However, there are ways to cope with our illness and develop resilience. So own your Crohn’s, own your mental health, and seek the help we may need to rise above all the trauma we may face living with our condition. We’ve got this!
Originally Published on Healthgrades.com, Medically Reviewed by Tiffany Taft, PsyD
