Should I do phosphatidyl choline drug trial?

Hi everybody, so back in a flare for the last 10 days. I am taking the max dose of asacol hd and was using mesalamine enemas about once a week (now wish I had been using them more). I have been fighting to stay off immunomodulators and biologics for the past 2 years but it now seems I am out of options as mesalamine is not able to fully control my UC. I had a GI appt today and dr said I can start entyvio (if insurance allows) or humira. BUT he also said I might be a good participant for a drug trial they are doing right now for patients not well controlled on mesalamine but don't want to take biologics. It is phosphatidyl choline sachets dissolved in water and dranken 30-60 minutes before breakfast and dinner. Sounds like it makes a mucus layer throughout your colon to protect it, and apparently PC is deficient in majority of UC patients. Sounds very intriguing to me! Only drawbacks are a LOT of medical visits and testing, and it also says you can't take any mesalamine enemas, just oral mesalamine throughout drug trial. And obviously no steroids, immunomodulators or biologics. Not sure how far I would make it without enemas??! What do you guys think? Has anyone heard anything about this??

Have you tried steroids to treat the flare? Maybe it will be enough to get you back to the 5asas.

The only other medical thing I could think of is surgery if you don't want to take biologicals or immunosuppressants.

How about diets, supplements or fecal transplants?

You're not even close to needing surgery but most of us who have had surgery regret that we didn't do it sooner. It is difficult but not nearly as difficult as I expected, I felt so much better after I woke up after my colectomy.

When I started with UC in 2005 Remicade was just being approved for UC, 12 years later we have 4 additional biologicals with 2 more on the way (Xeljanx and Stelara). Remicade was one of the best meds for UC that I ever used, I did great on it for almost 5 years.

After dealing with UC for almost 12 years the best advice I could give you is not to let the UC effect your QOL too much, take a medicine if you need it. UC can sneak up on you slowly and you don't realize how much it effects your QOL.

I wouldn't take a Clinical Trial if there is a chance of gettting a placebo, there are too many other good medicine options out there for you.