TSO successfully treats ulcerative colitis after drugs cause adverse reactions
I was diagnosed with ulcerative colitis in 2000, aged 44, after several years of “irritable bowel” and blood in stools. I think it started after an episode of food poisoning and I often wonder where I’d be if I’d been more careful with the fridge!
Conventional approaches
Mesalazine (Pentasa) sorted the symptoms but, after 5 years, my body reacted to it and I became very ill with what was thought initially to be lupus and/or vasculitis, but I only recovered when I ceased the Pentasa. I remained free of UC symptoms till 2011, when I was hospitalised with severe diarrhoea. I recovered after a short course of steroids and was then put on azothioprine, which I stopped after three weeks of constant vomiting.
I remained well on no medication till late 2015 when a colonoscopy showed moderate inflammation. Doctors thought I should retry azathioprine so they prescribed a low dose version, intending to add allopurinol later to increase potency. However, I stopped it after just 10 days because I was very ill and my liver enzymes were abnormal. As I was “not ill enough" for biologics, methotrexate was suggested, but I refused this.
An alternative path
It was at this point that I started looking for alternatives, because it was clear that lack of symptoms didn’t mean absence of disease. I considered FMT but decided against it due to the existing colon inflammation. I tried high doses of the probiotic, VSL#3, using fecal calprotectin tests to determine progress. Calprotectin was 89 (slightly abnormal) post colonoscopy but, after six months on VSL#3, it rose to 158. Then I tried turmeric and glutamine but 5 months later calprotectin had increased again to 228. At this point I turned to helminths, starting with doses of 2500 TSO every fortnight in Dec 2017. I had no side effects, except about 3 weeks in when I had a single, scary day of diarrhoea.
Eight months and 20 doses later, my calprotectin was 239 and I was having the odd bloody stool, and worrying that TSO wasn’t working. It was suggested I increase to 5000 TSO fortnightly, which I did, and four months later calprotectin was 130. Six months after that it was 102. Then, in Feb 2020, it rose again to 188.
I had almost decided to add in NA when the pandemic hit and I feared it might be difficult to get help should the NA provoke a relapse. Instead, I switched to TSO 2500 weekly, on the basis that perhaps they weren’t surviving the full 2 weeks and I’d be better with a continuously topped up supply in my gut. I’m not sure whether this made any difference, but when at the end of the year I switched back to 5000 fortnightly I had a day of diarrhoea much like after I first started TSO. Paradoxically, my only “symptom” of UC was constipation. It took 3 years of TSO before I felt this had returned to “normal.”
The next milestone was March 2022, when a repeat colonoscopy was normal, and calprotectin was 16, i.e., in the normal range. By then I’d been on TSO for 4 years, most of them at 5000 fortnightly.
Reviewing my journey
Just before I started TSO, I went to my GP clutching a printout of a paper from the Tanawisa website. [1] She was intrigued rather than disapproving, but didn’t write it in my medical notes. I’ve never told the IBD clinic nurse (whose reaction had been one of horror when I floated the idea of FMT.) Nor did I tell the endoscopist, since TSO don’t show on colonoscopy. They did show on the biopsy, however, where they were misidentified as “thread worms” with the recommendation – which I ignored – to take anthelmintics. I haven’t been seen in clinic since then, so don’t know how I will respond if it’s brought up.
I always chat to the little guys in the bottle before I swallow them, but I’ve told my partner that I’m taking “probiotics” as I know the thought of me keeping bottles of worm eggs in the fridge won’t go down well.
I worried a bit about the timing of my first covid vaccine in relation to TSO dosing, but nothing untoward happened and, by the fourth booster, I just took the date I was given regardless.
Summary
So to summarise: I am 66 and am lucky to have UC quite mildly. I don’t take drugs for it. TSO probably took 3 years to get me fully well. Unless I get symptoms in the meantime, the next milestone will be the next colonoscopy in 2027.
I also have lichen sclerosis, though not badly. This was diagnosed shortly after I started TSO but I’d had it for while before then. I understand TSO is supposed to help with this but it’s hard to know it if has in my case.
January 2023