I am in the Starbucks on Forbes Avenue near the University of Pittsburgh and Lowell is in a deep trance up the street.
He is working with an IBD pain specialist who teaches hypnosis intensively to patients to help them manage their abdominal pain, which is often a daily reality for people with Crohn’s disease or ulcerative colitis. It is complicated and often hard to treat. The pain can result from physical aspects of the diseases including the inflammation, ulcers, blockages, etc., but also nerve signaling that is hard to turn off, and the more complex interplay between the mind and gut, including the bacteria that scientists have discovered play a role in most every part of our health. If you have been interested at all in the study of diseases in the last few years, you have heard about the mind/gut connection and how our intestines, microbiome and brains are intricately connected, and influence each other in a much broader way then was ever thought. This field of discovery is very dynamic and will hopefully lead to better understanding and treatment of diseases. I have to direct you to Dr. Emeran Mayer for a more in depth explanation.
Previously I have psychologized and written about the effect of such pain on Lowell and our whole family. It is hard to really explain or for others to understand what it is really like to live with the pain that I have termed another member of our family, as it influences every aspect of our lives from trips we can take, activities we can do, and our social engagements.
It is late June, and our plan this summer is to focus on Lowell’s health, pain, growth and school work as he is supposed to be starting his senior year this fall. Though he has missed so much school in the last few years and especially his junior year, there is still hope he can graduate with his class.
We first came to Pittsburgh in the winter of 2016 to see this IBD pain specialist for a weekend intensive of learning hypnotherapy for pain management. Lowell’s pain improved in the following months upon our return home. Then last summer, due to another medication change and other factors, he had a flare, and was in and out of the hospital. The pain returned. We implemented other measures besides hypnotherapy including acupuncture, meditation, other kinds of therapies, and used medications that target the nerve signals that the gut sends to the brain.
Everything is confusing. What is this pain? Is it because of anxiety, never signals, an overly sensitive gut due to surgeries and other traumas? Is something still wrong in his body that needs to be addressed with surgery or a change in medication?
In February of this year, it was decided that he needed surgery again due to another narrowed area of his small bowel. Following this surgery, which ended up being a small resection, any pain improvements that were made after the flare in the summer had calmed down leading up to this surgery in February were challenged. Again, the pain returned.
After the surgery, Lowell’s markers of inflammation and nutrition improved. The surgeon declared that the rest of his intestines, of what he has left, looked very good. The pain ebbed and flowed. We again started our attack on the pain and decided to explore a more comprehensive pain management program. After consulting with doctors, an outpatient program at Stanford in Palo Alto was recommended, and we started the process of getting an appointment. The doctor had to make a referral and we had to submit records. Inexplicably and how it often goes in health care, this process took over 2 months. Finally they had everything they needed and I called in early May to schedule the consultation to decide if their outpatient program would be right for Lowell. In May, they were scheduling for August. They offered me August 29th, the day before my 50th birthday. I took it. They said they would call me if they had a cancelation for an earlier date.
In the meantime, we decided to come back to Pittsburgh to do the intensive hypnotherapy weekend since that was beneficial last year. I planned a trip to Colorado with Jonah (because when your son who is just home from his freshman year at college agrees to go on a trip, you don’t say no!) and his friend and his mom who also happens to be my good friend, in July, then a jaunt to New York from there for a friends 50th birthday party, and to work on the Rock the Night East event my charity is having in November. After all this was planned, Stanford called and offered us an appointment in July, which I took, and that meant this whole Colorado-New York-Stanford trips would be one after another.
While we were trying to tackle this pain, we were working on an equally pressing issue-Lowell’s growth and nutrition-and in order to help him grow, he needed something more aggressive then just trying to eat more calories every day and the sporadic NG tube feeds (a tube inserted via the nose that goes to the stomach and is hooked up to a pump that delivers formula) he has been doing on and off for years. This had become inefficient and he was not gaining weight. We decided it would be best to have a G-tube surgically placed so he did not have to do the NG tube every night. The G-tube is a little button on the outside of your abdomen that you also hook up a pump to that delivers formula directly to your stomach. Lowell would still eat, but he would get extra calories, anywhere from 750–1000, every day.
Due to the difficulty of scheduling the surgery, we had already booked the Pittsburgh trip when we were offered the June date for the surgery. We returned from Pittsburgh on a Sunday night, the next day we checked into our favorite (not) home away from home, Cedars-Sinai Medical Center for G-tube surgery. Lowell has had several abdominal surgeries but this one, which is done via laparoscope and is comparatively less invasive, is generally easier to recover from. At first this seemed to be the case, and recovery was going smoothly. After 2 nights in the hospital and starting the tube feeds in the there, he was discharged. But as has been historically typical with Lowell, complications ensued as soon as we got home. To recap all the details, read the blog post I wrote that day.
After almost a week total in the hospital for this debacle, we returned home and again, the pain returned. Each event such as this is a trigger. The nerves of someone who lives with chronic pain are very sensitive, easy to fire up and surgery, medical interventions, trauma, and associated psychological effects all contribute to the pain. I worried that the progress he had made in Pittsburgh was set back by having this experience so soon after.
The summer rolled on. I had a quick trip to Colorado where we hiked (got a bunch of mosquito bites), and saw the Avett Brothers at Red Rocks (if I had a bucket list, a concert at Red Rocks would be on it). Then from there I flew to New York City where said mosquito bites somehow went crazy when I landed in NY, but I managed to pull myself together and have a great time at my friends lovely 50th birthday party. Then I bounced around New York City organizing things for Rock the Night East (buy tickets!), eating and drinking my way through visits with friends, and a great crew of east coast people helping plan the event.
I returned to LA and Lowell and I headed up to Stanford the next day. The pain management program is comprehensive, takes a holistic approach to help kids who have chronic pain learn how to manage it, and to re-integrate into normal activities. It helps patients increase stamina, build up some lost muscle conditioning and learn coping mechanisms for pain. We were added to their waiting list for future dates where if we decided to do it, would spend anywhere from 2 weeks to 3 months in Palo Alto and Lowell would participate daily in this program.
A few weeks later we went to Minnesota for a week. At the end of August, I turned 50, had a casual party, and got to spend a few weekends at the beach.
There were lots of doctor’s appointments for both kids the last 2 weeks of August. Jonah had an endoscopy for his Celiac, he had his wisdom teeth out and a cavity filled. Lowell had follow up appointments with the surgeon, a bone density scan, an abdominal ultrasound and an endoscopy/colonoscopy himself. We got into a routine for the G tube feeds. The tests showed improvement and much less active disease. It was the first time in years we had received such news.
School started for Lowell and Jonah left to go back to Northwestern.
Stanford called and said they had an opening in the program to start in mid September and after careful consideration and consulting with everyone, we decided it would be best for Lowell to stay the course here at home. They added us back to the waiting list in case this changes and we decide we need to go.
After over 4 years and unbelievable amounts of interventions, surgeries, every kind of device you could imagine, things are improving. He is gaining weight, almost 10 pounds since the beginning of July, and I am planning the 100 pound party. His nutritional numbers are not dismal, and many are getting out of the low reference range. He has gone to school and is keeping up with his homework and regular schedule. One day he even woke up and said he was feeling really good and energized. I nearly jumped with joy and cried at the same time. I can’t describe what school mornings have been like for the past few years, and certainly I had not heard these words in a long time.
We are not out of the woods and with chronic illness, I am not sure you ever are. There is still pain, nutritional issues, the daily routine of tube feeding, medications and monitoring of his health. But if there is one thing I have learned, it is to appreciate the times when the pain subsides, when we get a positive test result, or when going to school for the whole day is possible, for that week, those few days, hours, or just a moment. It is valuable for us to be wholly present for these small victories.
