The Crohn’s Disease Journey Part 1

In 2017, TJ started high school at a very big public school near us here in Glendale, AZ. His behavior wasn’t concerning. I thought it was normal 14 year old boy stuff. The first semester was fine. By February of the second semester, he was a different kid. He was withdrawn, didn’t want to go to school or anywhere else. Everything became a battle with him. We pushed him to do things and punished him for not doing them.  

One morning in April of 2018, he would not go out the door for school. He began crying, then curled into a ball and rocked back and forth saying he could not go. This was my first clue that something was wrong. I’ve never had any psychological training and didn’t see the signs. Long story short, we found out that he was being bullied in PE class. TJ was not willing to give any details though. Thankfully, the principal was willing to allow TJ to drop PE and have a study hall during that period. He was still not comfortable at the school and he lost the PE credit. Knowing what I know now, I should have pulled him out completely, but we made him finish out the school year.

We enrolled the kids at Northwest Christian School here in Phoenix for the 2018-2019 school year. TJ was a sophomore and Sarah was in 6th grade. We knew a lot of the staff and our kids knew other kids from church. First semester was good for both of them. They enjoyed the classes and made new friends. 

Pain begins

In the fall of 2018, TJ started having occasional stomach pain that would come and go. I took him to the primary care doctor which did some blood work and referred us to a Gastroenterologist. His blood work came back normal and he was feeling better. Life was busy, so we didn’t go to the GI.

On December 10th, he started having intense pain, so I took him to the ER. They did a bunch of scans, blood work, and gave him fluids and some pain medication. After a few hours, he was feeling better and since nothing abnormal showed up, they sent us home with suggestions of possible food allergies. I took him to a Naturopath to get tested for food allergies and sensitivities. Allergies didn’t show up, but sensitivities did so we eliminated them. They recommended probiotics, and other natural products which we tried. He wasn’t in pain, but did not feel great. Fatigue was an issue which made getting up for school difficult. One other symptom he had that I did not consider were his bowel movements. His BM’s had always been somewhat loose, but a foul smell and urgency was becoming more regular.  He continued to go to school, although some days were hard to get up for. He had been cast in a school production of Rodgers and Hammerstein’s Cinderella. To keep the part, he had to be at school and keep his grades up, so he had motivation through the end of March.

During the first full weekend of April, Sarah and I were in California with her choir for a competition and a day at Disneyland. When we got home on Sunday, TJ was not feeling good at all and by the next morning, he was in extreme pain and didn’t want to eat or drink. I had him take all of the supplements from the Naturopath, gave him bland, easy to swallow foods and liquids. The pain didn’t let up, so I called the Gastroenterologist that had been recommended earlier. The appointment was made for April 11 and a colonoscopy was ordered along with prescription of Zantac and Prilosec OTC. The doctor said he suspected Inflammatory Bowel Disease. ¹ A week later on April 17th, the colonoscopy confirmed Crohn’s disease. He was prescribed 40mg of Prednisone, Mesalamine, and  6-mercaptopurine². 

I cried not only for his future but for my lack of understanding the symptoms. I wondered if the severity of it could have been less if I had taken him to the GI sooner. He tried going back to school, but the symptoms were too severe. Thankfully, the school worked with us for him to finish out his classes from home. This helped with dealing with fatigue and pain and also the anxiety of going to the bathroom urgently and frequently.

1st Hospitalization

Mid May, the pain started to get worse again. He did not want to eat or drink as it made the pain worse. On Friday May 17, it became severe. I called the GI’s office and explained what was happening and was seen the same day. The exam was “unremarkable” and suggested we have him admitted to the hospital for IV fluids, labs and a Small Bowel Follow Through (SBFT) test³. The fluids and medications relieved the severity of the pain. He was able to sleep and I got my initiation of sleeping in a hospital chair. The next day the SBFT was done. It was a long and tedious test, but no abnormalities were found. As you can see from the pictures, he was feeling much better the day he was discharged vs the day he went in.

Classes ended for Sarah, and TJ took his finals and passed the classes. We moved into Summer mode and tried to regroup. We tried to make it as normal as possible for Sarah, but it was difficult for all of us. During this time, I had been introduced to a lady that had a son with Crohn’s as well. She had been on the journey for a while so talking with her was very helpful. She also told me about the GI department and Phoenix Children’s Hospital. Her son saw Dr. Pasternak and she highly recommended him.

2nd Hospitalization

During the night of June 12th, TJ’s pain became severe again and then he started vomiting. I called the GI’s office as soon as it opened and was told to give him Pedialyte. I remember sitting on the floor playing a game with Sarah while TJ was on the couch. He would vomit into a trash can because he couldn’t get to the bathroom. By 1:00, diarrhea had started. He was lethargic and I was concerned. I called the doctors office again and was told to take him to the hospital for IV fluids and pain management. My parents picked Sarah up and Jon headed home. TJ was so week that we had to help him get to the car. When we got to the hospital, I got a wheelchair and we took him directly to the pediatric floor that he had been on 4 weeks before. They asked if I had stopped at the admitting desk and I told them no. He was likely to vomit or have diarrhea soon, plus he needed help. Fluids and meds helped him to sleep and allowed Jon and I to relax a bit as well. They ran more blood work, sent stool for cultures and did another Small Bowel Follow Through. By the end of day 2, he was feeling much better although still having some pain. All tests came back within normal limits. They allowed him to have some food and observed for another night. He tolerated the food well, continued to improve and went home on the 15th and told to follow up in 2 weeks to repeat labs.

Mama Bear

Definition: “An incredible inner strength and sense of courage, often previously unbeknownst to the subject before having children, unleashed when any child, not necessarily her own, is considered to be at risk of injury or harm”

I am not an assertive person by nature, but I had learned that there were times when it was necessary. I was angry that my son wasn’t getting better after being on medications that should have been helping him. I was angry that he had been hospitalized 2 times within 4 weeks and the doctor didn’t seem to care. He was not being proactive. I called Phoenix Children’s Hospital (PCH) and was told that they needed to review all of the records before an appointment could be scheduled. On Monday, 6/17, I collected paper copies of the records from the PCP, ER visit, original GI, and Hospital stays. On Tuesday I drove to PCH to hand deliver the records for review. Apparently, not many people do that since I had to explain what I was doing. I told them that I was desperate to get help for my son and Dr Pasternak had been highly recommended. The nurse told me it could take a week to get a call back, which was fine. I knew they had the records. On Wednesday I received a call that Dr Pasternak had a cancellation on Thursday, 6/20 and asked if we could come. Obviously we took it.

Lessons from this part of the journey

• Trust the “inner voice” and act on it
• Listen to the wisdom of those around you
• God loves my children more than I do and He has a plan for them.

1. https://www.crohnscolitisfoundation.org/patientsandcaregivers/what-is-ibd. ↩︎
2. https://www.crohnscolitisfoundation.org/emr/emr-ibd-education-tool/mercaptopurine-6-mp ↩︎
3. https://www.radiologyinfo.org/en/info/small-bowel-follow-thru#51c709c4190f472e883111ef100ec580 ↩︎