Can you pick me up at 10? My stomach is hurting and isn’t getting better.
a text from my son
My son’s pain is like another member of our family. It is there even when it is not there because it can strike at any moment and there are rarely days that it doesn’t loudly knock on our door.
Pain and Inflammatory Bowel Diseases go hand in hand just as pain is a feature of many chronic illnesses. For my almost 16 year old son, who was diagnosed with Crohn’s at age 2, pain has been a part of our families vernacular, traditions, and everyday lives, in and out for years.
I didn’t know that much about pain until my son’s pain joined our family. Since the traumatic events related to his Crohn’s disease 3 years ago, and subsequent surgeries and procedures, the pain has gotten worse, not better. I learned more about the brain-gut connection (they are one system, really) a and functional abdominal pain (which is when there is no known cause of the pain, except that that the nerves are signaling the brain to express pain). In my son’s case, it is a complicated mix since he still does have serious, known sources of pain due to his Crohn’s which doesn’t respond to the typical medications used to treat IBD. Because of the trauma and pain he has experienced in his life, he is likely more sensitive to the experience of pain. It is very difficult for us and the myriad of specialists we have seen to tease out.
We have pediatric pain doctors here in Los Angeles. Through them, and from my own research, we have seen acupuncturists, therapists, masseuses, chiropractors and hypnotherapists. I have also learned about all the medications used to target this nerve pain. Most have not helped much.
In December I was at the Advances in IBD conference and heard a speaker who is a pediatric pain specialist for children and adults with Inflammatory Bowel Disease. She works at the Pittsburgh Children’s Hospital at the University of Pittsburgh Medical Center. After speaking with her, we decided to go to Pittsburgh, which is now a city added to our list of places we might not have ever visited, except to see a doctor. We were there during the giant snowstorm of January 2016. We both loved it because we enjoy the change from the increasingly uniform Los Angeles weather which is mostly relentless sun and heat. We found a great Thai restauarnt within wallking distance our hotel that met my son’s dietary restrictions called The Spice Island Tea House.
The specialist we saw was inspiring, helpful, and connected with my son. We did a weekend intensive with her learning hypnosis to control pain. We also learned from her that hypnosis is being studied as not only a treatment for the accompanying pain of an IBD diagnosis, but that it can actually have an affect on reducing disease related inflammation. For the first time in long time, we felt hopeful.
Since returning, my son has diligently done hypnosis every day, has weekly video sessions with the doctor from Pittsburgh, and there are other techniques we are going to add based on her recommendation such as Cognitive Behavioral Therapy that have been also been shown to help pain.
His pain has improved but there have been setbacks, such as during a particualrly bad week when his Crohn’s symtoms increased, most likely due to a virus. It is not a quick process, this hypnosis/CBT/brain-gut thing. However, we are sticking with it, along with all the other things we hear about that could help because the pain is a most unwelcome guest and I will do anything I can to make it go away.
