Biopsy Results and Treatment Plan

Wednesday, March 15, Kevin, Caleb, and I sat at the kitchen table and joined a Google Meet with the doctor to hear the results from the biopsies and talk about a treatment plan. I had a note pad but was shaking so much that I am really the only one that can probably read the notes I took. And even that is iffy. 

Here is a breakdown of what we found out.

Biopsies

The biopsies confirmed the IBD diagnosis but couldn't differentiate between Crohn's and Ulcerative Colitis. Dr. V wants to do another test to take a better look. 

The Additional Test

The additional test Dr. V wants to perform is a capsule endoscopy. It is actually a really cool freaking procedure. 

First, to make sure Caleb can digest the pill, he will be given a pill that is meant to dissolve in his system. He goes back (the next day I think) to get an x-ray to make sure the pill isn't stuck anywhere in his digestive system. Once it is determined if his system can digest the pill, he is approved for the capsule endoscopy. 

He will swallow a pill that has a tiny camera, a transmitter, and a light. He will wear a recorder on the outside of his body. The camera will travel through his digestive track and take thousands of pictures. It transmits them to the recorder he is wearing for the doctor to view. This will give her a better view of his digestive track and hopefully help her make a better diagnosis. 

Treatment Plan Phase 1

His treatment plan will come in phases. We are already underway for Phase 1. 

He started a cycle of steroids on Thursday. Dr. V hopes is that this will get him feeling better quickly to give him some relief. 

He also started a two week liquid diet on Friday. The idea behind this is to give his digestive system a break from digesting solid foods. I didn't think this would be much of a challenge because we had already cut out so many foods from his diet. Boy, was I wrong! 

The steroids make him super hungry. We all know the insatiable appetite of teenage boys. Now add steroids to that and tell him he can only drink liquids.  Yikes. 

His meals consist of green and regular smoothies, meal replacement shakes that he hates, cream of rice, and apple sauce. After a day, I let him add baked potatoes (great for IBD flare ups) with a very little bit of dairy free butter. He seemed to tolerate that ok, meaning he didn't vomit or have horrible pain, so we added avocados. Depending on who you talk to, avocados can be great or horrible for people with IBD. Since he is eating such a small variety of food right now, it will be easy to figure out if he can tolerate them. 

The first two days were the worst and I still get questions every day like, "Can I have tortillas?" 

Eventually, we will meet with a dietitian from Dell that will give us some ideas on meals that are safe for him. 

The next phase of treatment will begin in 4-5 weeks and is the really scary part for me. 

Treatment Plan Phase II

Phase II involves infusions of a drug called Remicade. The infusions will start with a small does and gradually increase. After he receives his first does, he will have his second dose in two weeks. Then four weeks after the second dose, he will have the third dose. Once he is receiving his full dose, he will have an infusion every 8 weeks. 

Each infusion will take a few hours and because of a risk of allergic reaction, he will also be given Benadryl on infusion days. 

Just like every other drug on the planet, Remicade comes with a long list of warnings and side effects. The drug that is essentially savings his insides will also lower his ability to fight infections. So he will need to be diligent about cleanliness, germs, and avoid big crowds and sick people. 

Depending on how he does will all of the treatments will determine if additional treatment or surgery is needed. Some people go into remission with Remicade and others need to try alternate treatments. Remission is the ultimate goal of course. 

Caleb has been very sad and mad about not being able to eat his favorite foods even before the liquid diet started. But I think he is finally starting to understand the consequences. 

As sad/mad as he is about not eating his favorite foods, the saddest he got is when I had to break the news to him that our summer trip to the Bahamas would have to be postponed. Because we don't know how he will react to treatment and because his immune system will be compromised, we can not risk a plane trip. That is the first time I saw him tear up about this situation. Going to the Bahamas is a dream vacation he has. I assured him that we will go once we get further along in this mess. 

Thank you to everyone who has read his story, reached our, offer prayers, healing vibes, and words of encouragement. It really does help and is very much appreciated.