The Crohn’s Journey Part 2

When I started this blog I had high hopes of adding posts every 2 weeks. Accomplishing that is harder than I thought, especially during this time of year. Plus, going back and reliving this particular journey is difficult and I have been putting it off. I have decided that I need to get it done , so here we go. 🙂

Phoenix Children’s Hospital GI group

As I mentioned in the last post, we were offered an appointment with Dr Pasternak on 6/20/19. From the start, we felt much more comfortable with the office and the staff. It was obvious that they were comfortable with kids and were well educated. Dr Pasternak came in and began to explain things that we didn’t fully understand. He told us that TJ should have felt much better. The improvement was expected after taking the medications the other doctor had prescribed. He said the first thing we needed to do was taper off of the prednisone as it was not helping. He went over the options of other medications and ordered labs. Then the nurse came in and gave us several handouts with information of all the things that PCH offered. I left feeling like I finally had some help.

TJ started a medication called Humira which required him to give himself an injection. After doing it a couple of times, he was comfortable with it.

In the hospital again

Sarah went back to school the first week of August. We had decided to focus on getting TJ healthy before worrying about school for the time being. My parents had traveled to Oregon to spend the month of August out of the heat. TJ and I flew up there during the middle of the month to get away for a week and rest. We came home on Tuesday, 8/20. On Thursday, he was having significant pain and was lethargic. We got an appointment with Dr Pasternak. After doing vitals and seeing how TJ felt, they sent us to the ER for further evaluation and eventually admitted him for pain management further testing. After 3 days, nothing major was found and he was sent home.

Annie the musical

The next few months went by with no significant health issues. He was in counseling for the anxiety that he was still dealing with. He was taking vocal lessons and hoping to get back to doing musical theater. Spotlight Youth Theater (SYT) had announced that they would be doing Annie in December. TJ felt good enough to audition and was cast as President Roosevelt. Rehearsals went well and the show opened on December 6 and had shows Friday, Saturday and Sunday for 3 weekends. During the 2nd week, a sickness started going through the cast. We prayed that TJ would not be affected, but his immune system couldn’t fight it. By Friday, he was not well, but was determined to do the show. We parked by the back door and he slept in the car during the first act. When it was close to time for FDR to go on, he got in costume, and prepared to go on. Luckily, FDR was in a wheelchair, so TJ didn’t have to stand. He went out, did his lines and sang his song and did the bows. When the rest of the cast went out to greet the audience, he went backstage. When I got to him, he was leaning against the wall and barely able to walk. I helped him to the car, and we headed to the ER. Thankfully, he started feeling better after getting fluids, so we went home to sleep until it was time to go back for the show the next day. The rest of the shows went well and he enjoyed feeling like a “normal” teenager for once.

2020

In February, TJ was in the show Frozen Jr at Spotlight at SYT. He was cast as King Agnarr and Oaken. He was healthy through the run of the show. He had a great time with the roll of Oaken!

When COVID hit, we were all apprehensive about what we should and shouldn’t do because of TJ’s compromised immune system. As time went on, we knew he couldn’t stay in a bubble. We cautioned him to be careful who he was around and to wash his hands a lot. Thankfully, none of us got sick.

In July, he finally got his drivers license. On August 5th, we had a party to celebrate his 17th birthday.

Back to PCH

Ten days after the party, he started having stomach pain. When he started vomiting the next day, we went back to the ER and was admitted on the 16th. After five days of pain management and testing, he was able to come home. One of the tests used to check for inflammation in the intestines is a Calprotectin Fecal test. Under 50 is considered normal and anything over 120 is abnormal. When this was done at the hospital, his came back at 2150. They added Budesonide, a type of steroid, to his medication list in hopes that it would help get the inflammation under control.

The end of 2020

September through November he felt normal again. I had found an online homeschool curriculum that was working for him and Sarah. He was playing in a band with some theater friends. We were preparing for the holiday season again.

The first week of December, pain hit again which ended us up in the ER once again. Thankfully he was not admitted, but was scheduled for an MRE on the 16th to check the structure of the intestinal tract. This procedure required him to drink a contrast that came in 3 different bottles of liquid. He was very uncomfortable by the time he drank it all, but was told it would get better soon. They took him back for the procedure which went fine but he came back sleepy. The nurse said it was normal and to work on getting changed to go home. I let TJ rest for a few more minutes and then started trying to wake him up. After several attempts, I went to the nurses station and asked if it was normal for him to still be lethargic. She walked back to the room with me and said that it was normal for kids to not want to get up and get dressed. When she tried to rouse him, he still wouldn’t respond. She started checking vitals and the next thing I knew I heard a code called to the room we were in. The next thing I knew, the room was full of medical personnel. There was concern that he had an intestinal tear, but they ruled that out. They took him to the Emergency Department for fluids and further monitoring. They diagnosed it as a syncope episode and sent us home once he was stabilized.

The rest of December was filled with “bowel anxiety”. He wasn’t in pain, but was there was blood and inconsistencies. Dr Pasternak advised us to change the medication to Stelara.

2021

On January 6, he had his first infusion of Stelara. It went well and we had high hopes of getting back to normal.

In February, he started working a custodial job. He worked in the evening cleaning the Spring Training clubhouse for the Seattle Mariners and San Diego Padres. He didn’t mind the work, but his GI tract was not healthy. He continued having blood, pain, and other issues. Blood work and other tests were being regularly. A Calprotectin as done in February, and it was near 350 which was good. He continued having bloody stools and discomfort so they redid the Calprotectin in April and it had jumped to 2950! I have a vivid memory of when I got that phone call. I had to ask the nurse to repeat it and then I cried. It was time to try a different medication.

In June, he had his first infusion of Entyvio. He was not healthy enough to be consistent at work and was let go.

Another Calprotectin was done in July and it had come down to 1140. Obviously it was better, but nowhere near normal. The decision was made to stop the Budesonide and try Methotrexate injections. He wanted to work, so he applied at AutoZone for a warehouse position and was hired. They decided to make the counter position a part of his rotation. It was not a good fit and he left in October.

A colonoscopy was also done in October which showed inflammation and ulcerations throughout the colon. Another Calprotectin was done in December and it was in the 800’s. Better but not good.

TJ had turned 18 in August and since he was an established patient at PCH, he could have stayed with Dr Pasternak until he turned 25. But, Dr Pasternak was doing all that he could from a pediatric treatment and could not get the inflammation under control. He advised us to think about transferring to Mayo Clinic. Our insurance covered it and we began the process.

Retrospect in writing

As I noted at the beginning of this post, going back has been difficult. Thankfully, I kept notes and have access to medical records but it reminds me of a lot of things I had tucked away. I have focused on TJ’s health in this, but we did fun things and tried to live as “normal” as possible. Jon was working full time, I was doing volunteer work at a clothing closet with our church, along with trying to help Sarah lead a normal life as well. It took a toll on all of us though but I didn’t realize how much until later.

I will finish the rest of the Crohn’s journey in a later post.

Lessons from the journey

• Making notes about symptoms and keeping medical records is helpful
• Going back and reading notes about symptoms and medical records is also draining, so be prepared
• Sharing about these things is healing
• Even though I didn’t write much about the people around us, we had them and they helped keep our heads above water when we felt like we were drowning.
• Find things that bring you joy and do them

“We also pray that you will be strengthened with all His glorious power so you will have all the endurance and patience you need. May you be filled with joy.” Colossians 1:11 NLT