Mental Health and Crohn's: Reach Out

One thing I have learned with having Crohn's over the decades is that IBD is unpredictable and even though you may get it under control (to a point) and learn to have a "normal" routine day to day, year to year... IBD loves to throw curves and tests your way.

I don't have enough fingers and toes to count just how many times my Crohn's has tested me almost to the breaking point.

Crohn's isn't our fault!

I've had it long enough to know, now, that Crohn's disease is NOT the result of something I did. God wasn’t punishing me for something I did in the past (though I was a good kid growing up). And though I often questioned God, I am not a religious person. In the beginning, it never stopped me from questioning and revisiting what I did or could have done differently so that I would not be living this life I was living now. I've talked with enough people with IBD to know that many of us have this same question every day. Why me?

Guilt, pain, depression, anxiety, and frustration are just a few things I have felt personally and still do at times. Guilt for having my family sometimes suffer for something I cannot control. Missed vacations, canceled plans, the inability to participate. Pain from not only my Crohn's but also my joints, muscles, kidneys (stones), surgeries, anguish. Depression/anxiety from missing out, losing friends, people not understanding, people pointing and staring, snorts of derision for missing work, and the frustration that all of this, and so much more, brings.

Mental health resources for newly diagnosed

There was no mental health help (other than a helpline) when I was diagnosed. When I talk with newly diagnosed people, I recommend seeking help and insist, if need be, if they get to that point when the disease has almost won. It didn't take too long into my fight with Crohn's (about 3 years in) that I tried to seek help but felt no one was listening. At the time, I was having multiple resection surgeries, meds weren't really working, and I was in a not-so-supportive relationship.

It is very easy to go to that dark place when you feel you have no other option – and I did. My attempt did not work and just made me very very ill and even though I did what I did, there was still no one reaching out to help me. The attempt, though, did scare me enough that I knew I had to do better. It was a wake-up call.

Find support – people want to help

My point is that the disease does not define you. Crohn's is hard enough. It takes all your strength. Don’t worry about what others think about you or what they THINK they know. Don't waste your energy on the things you have no control over but focus on what you can do to make your life worth living with what you have to deal with day to day every day.

Don't be afraid to ask for help if you need it. So many people out there now either know someone with IBD or knows about it, unlike when I was diagnosed. Many social sites, blogs, and patient-led sites, including InflammatoryBowelDisease.net, are available for people to reach out and so many of us are happy to help or just listen.

Crohn's has a huge impact on us

Yes, my life is not what I expected when I was diagnosed at 20 years old but I also would not change anything. Because of my illness, I may not have met my wife and have my 2 boys today and it is ever-changing. Just 2 years ago, at the age of 52, my Crohn's took yet another turn and I needed to have an ileostomy with proctectomy. Yet again my mental health, along with my physical health, challenged me with secondary acute kidney failure (which has taken 2 years to recover).

I still have mentally challenging days but I now have to proper tools to deal with everything.

You're not alone

Please reach out if you need it or if you simply have questions. Ask your GI or family doctor for help or to be directed to the proper professionals. Or ask patient leaders and advocates who have the personal experience. IBD is a chronic illness and you did nothing wrong. You have nothing to be ashamed of or feel guilty about. All you have to do is reach out.

Editor's note: If you or someone you know is in crisis or considering suicide, please contact the 988 Suicide & Crisis Lifeline. Call or text 9-8-8 or 1-800-273-TALK (8255), or use the Lifeline online chat.