One year ago I sat nervously holding a tiny vial of microscopic whipworm ova. “Just drink them,” I told myself. I had gone this far, no looking back now—right? This was the final moment, months of research up late at night, anxiety over a new highly experimental therapy—my mind switched back and forth between excitement and doubt. I tried to imagine what life would be like without IBD, without the specter of sickness haunting me daily. In the previous five years, not a single day had gone by where I didn’t have to deal with being chronically ill. Even at my best, I still thought about it every single time I went to the bathroom. I worried everyday about what would come out of my body. I worried about it every time I sat down to a meal, wondering if I’d eat something that would aggravate my intestines. Each morning in the bathroom would determine my day—would it be a ‘good’ day where I could mostly go about my daily life, or a bad one, spent worrying about where the nearest bathroom is, stashing toilet paper under my car seat for emergencies. The most difficult part of having IBD is the invisibility of it–to almost everyone I appeared healthy and (usually) happy, and trying to negotiate the symptoms of my disease with that of trying to live a normal life was often exhausting and stressful. It is no secret that people with IBD often suffer from anxiety and depression, in addition to the physical difficulties and pain, and I was no exception.
Staring at the vile of whipworm ova, I knew it was the right thing to do. I had spent so many months and late nights researching this therapy, making sure it was safe, or at least safer than the drugs I was taking. The doubts remained, but I was ready. I said some kind of prayer, even though I’m not religious, and tossed back the solution of ova. No reaction, nothing. I watched some TV to ease my mind, and went to sleep.
Fast forward one year to today, and I’m in the best shape I’ve been in since my teenage years. I’m exercising every week, biking and running. I’m eating almost whatever I want (although still eating healthy) and have even almost gone through an entire bottle of Sriracha chile sauce. Most importantly, I’m having totally normal bowel movements. I’ve literally even invited people into the bathroom to look at my stools they look so good (oh the poor people in my life). My bloodwork is coming back normal, my C-Reactive protein is < 0.1 and I’m in total remission. The only thing of note is that I have elevated eosinophils, which is actually a good thing as it is a sign that I have helminthes inside.
A brief summary of my experience over the last year:
Two more new helminth blogs have started up! Go on over, bookmark their blogs, and wish them good luck!
Getting Healthier Now (using hookworm to treat UC, asthma, multiple food and environmental allergies)
Whipping Out Colitis (using human whipworm to treat UC)
I remember back in the day (a year ago) when I was the only helminth blogger using human whipworm for UC, and just one of a 3-4 helminth bloggers at all. I was so grateful that people had been blogging about their experience before me, which helped me realize that this was not some internet scam but a very real therapy with huge potential. I started this blog to ‘pay it forward’ so to speak, as well as have a nice record for myself. Plus, I enjoy connecting with others and talking about this therapy, and (eventually) do respond to all emails and posts.
One note: as bloggers writing about an experimental therapy, we all have a responsibility to be careful about what we write. Being clear that you are not giving medical advice and are not a doctor/expert is a given, but despite saying that, people give a lot of trust and expertise to those of us who blog by default. We all have a lot of anxiety about this therapy, a mix of desperation for success when things look good, and flipping to immediate despair the second something goes wrong. I like that some bloggers regularly write monthly (more or less) summaries to keep readers on track with what their experience has been like overall. It’s obviously interesting to write about your experience, but try to balance details with the long view–your readers want to learn about your experience, not read every thought or symptom you’ve ever had. I too remember when I first started I wanted to document every gut gurgle or perceived effect, but the therapy simply does not work like that (although it is good to write about the first month or two in detail, as people are interested in others’ reactions to the little guys). It’s one for the long haul, patience is key. Also, please be clear about the details of your therapy–how many helminths or ova you took, what date(s), which provider, etc., always useful. I get emails every week from interested readers, and am nearing 10,000 hits, so I do take my responsibility seriously with this blog, despite my less-than-serious parts that I include for fun. Thanks for reading & keep on blogging everyone!