We delayed treatment for my younger daughter. She was diagnosed with Juvenile Idiopathic Arthritis (and later diagnosed with Crohn’s) a few days after turning 12. Her older sister had already been diagnosed and we had already agonized about biologics and delayed starting them, and finally when we did, we got our happy teenager back. But my younger daughter’s arthritis did not seem as severe, so we tried alternative therapies - seeing an integrative medicine doctor, trying gluten free, treating her for Lyme disease which the integrative medicine doctor insisted she had (she did not) and all that time, inflammation in her joints was causing permanent joint damage and her arthritis was spreading to other joints. She was so miserable, in so much pain, missing school (very unlike her, she loved school) and stopped sleeping through the night. She also developed pretty aggressive and hard to control arthritis, and several rheumatologists have told us that’s because she was not treated early enough or aggressively enough and she’s never even been close to remission. And permanent damage has meant permanent pain and lots of surgeries
- including joint replacements in her early 20s. There is nothing I regret more than not treating her appropriately EARLY because she has been through SO much (15+ hospitalizations and 10+ surgeries) because we were afraid of biologics (even though we already had one kid on them doing well!!).
So when she was diagnosed with Crohn’s at 16, we did the opposite. We made sure she was treated aggressively early. She struggled with being malnourished and severely underweight, but regained weight with supplementing enteral nutrition. But besides that, her Crohn’s has been in the mild to moderate range, she’s had absolutely no serious complications like strictures or fistulae and her Crohn’s is currently in remission on Remicade and MTX. Her Crohn’s was not as bad as your son’s at diagnosis - she had ulcers in the last third of her colon and inflammation in every part of her colon and terminal ileum (which was friable - bled when biopsied) but no fistulae, and her GI still wanted to get the disease under control ASAP. Her symptoms were also not typical - she had abdominal pain and weight loss and some constipation. We honestly thought we’d be ruling out Crohn’s but biopsies confirmed it. We did not want to risk her Crohn’s becoming more complicated, so we followed her GI’s advice and put her on Remicade back then, MTX and Entocort and I’m so glad we did. It took several infusions before she really felt good but the Entocort helped in the interim (she found EEN too hard at 16, though she did it later as a young adult).
Your son’s Crohn’s is already in the severe category if he has a fistula. I would honestly follow the advice of your doctor. The only diet treatment that has extensive research behind it is EEN, which is 100% formula and no food and while it can be done, it is hard on kids. It’s typically done for 6-8 weeks, only to induce remission and to give a maintenance medication like Remicade or Humira time to kick in.