Whipworm Study and UC Update: Weeks 16-32
Today I went in to meet with my research team before my very last appointment for week 36. I was informed that the TSO study has been cancelled nationwide. The team at Virginia Mason will be closing out the study with their last patients and then the study will be no more. They weren’t really sure why it had been cancelled, but it is a major bummer. The interest in the study had increased since I joined it and there were others on the waiting list to get in. Not only is the study terminated, but that means that they are no longer seeking FDA approvals and the chances of treating UC with this natural alternative in the US is now very low. I still have hope for possibly getting treatment in Canada, but have yet to decide what course of treatment I may take. I should find out soon if I was on the placebo treatment or on the real worms after my stool collection at week 36 and after the others in the study have finished out their treatment.
As for my UC symptoms, they are pretty much the same. I would say that I am still in an active flare, but its not as bad as it was before I got treated the last time I went on prednisone. I would say that the symptoms are bearable and that I can continue on without reaching out for additional treatment. I still take 4x Lialda pills a day. I also take my Rowasa when my flares get worse. This seems to dampen the cramping, blood and urgency until I need to take it again.
Diet really is the biggest part of how I am feeling. I have discovered that alcohol of any kind will knock me out for a week after having a glass. Also, if I drink caffeinated coffee, I also suffer for up to a week. I have stayed away from all coffee and alcohol since narrowing this down. I tend to drink warm water throughout the day and it seems to help with digestion and keeping me regular.
My next step is to do the 3 day stool sample in a few weeks to end the study. I am also contemplating going on the Whole30 diet. I have been told by a GI nurse (not affiliated with VM) that it could put me into Remission and it will better help me figure out what my triggers are. Along with Whole30, I have been told to stay away from nightshade plants. So I may also try that at the same time as I do the Whole30. Will make sure to keep you all informed of the end of the TSO study as well as my Whole30 outcomes and recipes.