Ulcerative Colitis and PTSD

Hi friends,

I was just wondering if anyone has been diagnosed w PTSD related to their uc?

I haven't been formally diagnosed, but I have been struggling a LOT mentally since my extremely traumatic diagnosis/first flare back in July and I HIGHLY suspect I have it.

I decided to be a trooper (mistake) and go on our pre-planned family vacation to Ireland about a week after my diagnosis and let's just say living in a cottage in the middle of the irish countryside miles away from any healthcare when you're essentially bleeding out, starving and dehydrated bc you can't keep anything down is less than the dream vacation.

That was now 8 months ago and I'm still suffering from traumatic flashbacks and consequential panic attacks. I know I need to seek professional psychiatric help, I'm not looking for any free therapy here. I just wanted to see if anyone had any similar experience. UC has been a ridiculously isolating experience on its own and this just makes it that much worse...

It is a very real thing that I have to believe most sufferers of IBD (and even IBS) go through. Check this out for reading on how the brain is connected to the gut: http://www.hopkinsmedicine.org/health/healthy_aging/healthy_body/the-brain-gut-connection

I had a flare in 2010 that lasted 4 months because of a lack of insurance. Once I got on medication and leveled out, I had about a week before flying to the Middle East. Let's just say I was thinking the trip was impossible. But I went, and saw that I could keep myself not just alive, but maintain my disease farrrrrrr away from my comfort zone.

I know your travel story involved a flare, so mine is not a good parallel. But what I learned on my trip and have carried with me, reinforced and learned since this experience is that we are in control of our thoughts and bodies. I lose sight of this sometimes, and found myself seeing a psychologist for a few years to go over thought mechanisms to help me not dwell on my IBD/UC. A conclusion he helped me arrive at was: we cannot control the first thought to pop in our heads. What we CAN control, however, is every thought that follows. So if you find yourself worrying to the point of perhaps making yourself sick, my experienced advice would be to do everything in your power to divert your attention from whatever thought led you to this and consider other, irrelevant or otherwise positive outcomes.

I became someone who exercises every day, when I previously couldn't have cared less. It felt great to be able to be in control of my physical fitness and I started liking the way I looked and felt more and more as time went on. This has become my reality for the past 7 years, and will continue to be until I physically am no longer able to. I've learned lots of discipline as a result of helping myself get through life with IBD. The way you deal with one thing can, often, be applied to other areas of your life and that's what taking care of myself taught me. I am confident in saying my desire to get well made me a better person.

Even when I'm flaring, I keep thinking about how the next hour/day/week will be better and I'll get back to life. I wake up in the mornings and assume things are going to be normal and try my best, at all times - healthy or sick, to stay in control.

So to answer your question: you are far from alone. This community is here for you and there are great mental health professionals who can guide you toward not allowing your UC to define yourself. You've got your whole life ahead of you, and most of it will be better than it was when you flared overseas. I promise. Good luck and don't hesitate to ask more questions - most everyone here is happy to help

UC has been a factor in stressful / anxious experiences I have had and vice versa. My diagnosis came at a time of intense and prolonged stress and the illness and anxiety fed into each other. This means that having positive perspectives that enable you to feel more relaxed and peaceful will help your ulcerative colitis, and improvement in your disease will help you to feel more relaxed and peaceful too. Seeking psychiatric help sounds like a good idea. Just be aware that any ideas the therapist or professional has are IDEAS, not the way things are. Don't take any thought or analysis as gospel truth, including if not especially your own. The way you see things influences what you experience so find / create ways of seeing things that empower you. I say this because some therapists ideas may not help you and some therapists ideas may help you. I read a little bit of a book on trauma, I think it was called The Body Keeps the Score. Maybe you'd find it interesting.

A relatively new advancement in PTSD is called eye movement desensitization and reprocessing (EMDR). There are specialized psychologists who perform the therapy. It may be worth looking into if you, in fact, have PTSD. If the idea of sitting around and crying/talking about your feelings to a stranger does not sound like it is for you, I would give EMDR a try, as it is not that type of therapy. I know several people who have used it and swear it saved their mental health following some extremely traumatic events.

I am a senior citizen (71) who was diagnosed back in the dark ages, 1961, at age 16. No internet, no colonoscopies (barium enemas, sigmoid scope and two weeks in hospital to diagnose, another two weeks in the hospital for blood transfusions (5) and trying different meds). Finally they went to prednisone which was relatively new. Back then no areas of the hospital for teens, so I was located where they had an open bed. It was in the cardiac care unit.
No one in my family, and no one I knew ever heard of Ulcerative Colitis or Crohns. So yea, it was a very lonely time for a teen girl. And there was no immodium. So when I went out with friends, I carried a large purse for "just in case" stuff, like extra underware, and kaopectate.
The intensity of my disease lasted for a long time. I would say I flared monthly for much of my adult life up until menopause.

But I worked through the issues enough to go to college, become a teacher and teach for over 40 years. The "little" things in life ONLY people here really understand became survival techniques. No one told me, but I figured it out. Whenever I moved to a new school, the first things I checked out in the buildings was access to bathrooms in relationship to where a room where I would teach. I also informed my team mates so if an emergency hit while I was in class, they could cover (that was rare). Also I knew where every public bathroom was available on all my routes to work. My entire career I got up more than two hours before work, ate right away so I could take care of things before I left as my worst times were usually in the mornings. And then on the way home I often had issues thus knowing where I could stop and go. When Immodium came out , first as prescription, then OTC, it became my best friend.

But yea, there were lots of issues that were exceedingly difficult. For me, dating. I was too embarrassed to ever explain to dates. So I did not date so much as a teen. Later, I did have many relationships but chose not to marry as I did not want children and feared passing on this disease. But being a teacher, that was no big deal. I was with children most of my working life and that was wonderful and enough for me....

The one thing I regret is not going to counseling or therapy or having someone to really talk to about UC until much later in life. I have been on and off this bb for many years. I am currently dealing with a flare, the first major one in about five ones (had a few short minor ones), a reminder that UC is for life. I get a colonoscopy yearly but I feel I have lived a fulfilled life despite how much UC can adversely affect things. I have traveled but not as much as many of my friends. I still find traveling to give me more anxiety than most things.

Anyway, I hope you find a way to get through the PTSD and live a somewhat normal life and find supports here and elsewhere. Talking to others who live this has been a great blessing, one I wish I had had in my youth.

Thank you all very much for your feedback. I will definitely look into EMDR if I am offically diagnosed w/ PTSD. You're all very helpful and I wish you all the best. Hugs for everyone

Fletch10 said...
JudyJo, your response to this thread was truly helpful and inspiring - thank you for sharing your story!

Likewise

Our gasteroenterologist treats our physical ulcerative colitis symptoms but not the psychological effects of UC. Unfortunately, UC and anxieties and depression go together like love and marriage, bees and honey, and flies and poop. We all struggle to varying degrees due to insane urgency, accidents, and various aspects of this awful disease. Unfortunately, there's no easy button.

Seek any form of escape you can as no person can worry about UC 24/7 and expect to remain sane: excercise, yoga, meditation, practice mindfulness, invest in hobbies, music, reading or anything you enjoy.

There's IBD groups that can help, the ccfa has nationwide meetings and events www.crohnscolitisfoundation.org/chapters/local-chapters-index-page.html

Seek a counselor, therapy, and antidepressants if it's too overwelming to handle yourself.

Tips for coping with stress and anxieties:
www.stress-relief-exercises.com
www.healthcentral.com/anxiety/c/73076/34334/breathing-lessons
www.healthyplace.com

Three Minute Mindfulness Meditation Video
/www.youtube.com/watch?v=cDflnqo0TQs
/www.youtube.com/watch?v=q2_UfFIszkY