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!
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.  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.
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.