non symptomatic while on SCD

Hi I’m new to the site. I was diagnosed with crohns around 2002- I wasn’t symptomatic at that time and was diagnosed by chance during a physical. In 2003 someone introduced me to the SCD diet and I started it proactively.... in 2008 I went off it and got my first taste of a flare up- fever for 3 months, lost 30lbs in a month, diareah 12 times a day etc - miserable. The dr I was seeing told me I would die if I didn’t get on pregnasone- I decided to get back on the SCD and was fine within 4 days. Over the last 12 years I’ve mostly been on the diet- and I don’t take any medications at all. For the most part don’t suffer any of the symptoms I associate with crohns. I have no pain, my weight is stable, I have regular bm, I have good appetite etc. I got diagnosed with PSC 4 years ago and so now get a colonoscopy every year. The drs see inflammation, but no displasia and they always tell me if I don’t get on a medication there’s a much higher likelihood I’ll get cancer. I really have a hard time deciding what to do, the drs for the most part completely disqualify the positive impact of the SCD diet, and most recently the dr wants to prescribe Entyzio. If I feel fine, how can I weigh the risk of the medication with the possibility of complications in the future..... is anyone else on the SCD diet?

We had a mother post here several months ago with a young daughter on this diet. I want to say she had been on the diet for a couple of years & her scopes were not good either. It can be a hit or miss, nothing guaranteed. I suspect someone with mild crohns can have success, just my thoughts.

Normally when a person has something like Entyvio recommended they are in the moderate to severe category. What category does your dr say you fall into based on the scope & biopsy? Keep in mind letting inflammation sit there & simmer can lead to more problems.

Our gi's are taught nothing about diet in medical school. They are taught what medications used to treat the disease. Your dr is not being dismissive about discussing diet, he has to stay with what he knows. Imagine what would happen if he recommended a person a diet only & that person ended up in surgery, the dr would be sued. Some of the big IBD centers have holistic practitioners that gi's will also incorporate into treatment. You may want to check around & see if there is one close to you.