Posted 3/11/2017 12:29 PM (GMT -6)
I was dx'd with UC (w/ c. difficile infection) during mid teens round 2000. Flareup was a significant moderate, because of the c.diff. I was bestowed 1-3 mild to moderate flares per year. Sulfasalazine maintenance and prednisone oral was my standard over the years. All flares were self-limiting in 2-4 months if I did nothing but prednisone was reliable for quick remission. In 2012, my life changed, organically and pharmacologically. Here's your executive summary:
In early May 2012, I began experience full body pain, head to toe, the worst of my life -- every moment of every day. I recall suspecting that it was mono, although I was entirely absent fatigue. However, lacking the mono diagnostic trifecta, my gastro moved for a colonoscopy (maybe I had a flare at the time, don't recall). Extreme pain let up after 1 week, altho still severe, and 2 weeks after that I finally got severe sore throat and my GP ran a monospot and diagnosed me as having mono. All better in a week or 2.5, IIRC. Ethically-questionable docs did not prescribe pain medicine until week 3 (lol) at which time I was given tramadol.
I found out that tramadol also was mood-brightening and helped me accomplish things more effectively that I had wanted to get done. In research I had found that tramadol was deemed pharmacologically equivalent to venlafaxine (Effexor). Tramadol was 4-10x less expensive. So we went with it.
For exactly 2 years, I had 0 flareups, and no more than 1 a year after. I was aware of the opioid theory of UC and being that tramdol is a dual action SNRI + opioid agonist. However, I have been unable to discount mono as having caused systemic changes which may have contributed. Mono interferes with the prognosis of some other pathogens and can cause other bodily changes.
I tried something new May/June 2014, probiotics. S. boulardii and Lifeway kefir was my test, and it fixed me up in 2-4 weeks (have to find my notes to speak more specifically.) Optimal dosage seems to be 25-35 billion CFU at least 2x daily and at least 32oz kefir daily.
I later learned that adding 360mg fexofenadine at least 2x daily might shave away up to a week off achieving remission. Theory is mast cell stabilization in the colon. Mast cells are histamine releasors.
Nicotine vaping has done instant wonders for urgency over the recent years. It really is, have an urge, puff, puff, puff, lose the urge. I tried patches for remission without success (21mg). All I got from patches (which I tried years ago and remember not so well) is more awesome dreams than I already have (no joke) and itchy patch marks.
Either salvinorins or the plant S. divinorum has been studied and found to reduce motility in those having flareup but not healthy persons. It was not clear to me if the colon was being delivered salvinorins directly by raw plant material or if introducing by other modes (buccal, intranasal, lungfully, IM or IV) was successful. I chewed dried leaves, perhaps smoked also. It definitely did redice motility but didn't seem to help achieve remission. Salvinorin A is a kappa opioid agonist. Unfortunately, in the recent several years, several states in the US have tried to pidgeonhole it into Schedule I of controlled substances. It has both cognitive/conscience-explorative and 'recreational' value but it is almost categorically anti-addictive or -habituating.
None of the above will work for everyone and that is attested to across the internet. Some people are going to fail to tolerate some or any of the above well, because of their other receptor systems' responses or their current microbiome configuration.
I would like to hear from anyone who suspects mononucleosis affected their UC outcomes, or from anyone having positive results from opiates/opioids for maintenance or remission (up to and including diacetylmorphine, aka 'heroin', which is manufactured in pill form and part of the pharmacopoeia in other countries).
In more recent events, I have experienced an unusual course with a flareup since fall 2016. I became a political prisoner mid-August and was cold-turkeyed off tramadol on day 1. 1.5 months later I thought I saw evidence of mucus and blood but it was not regular or conclusive. 2 or so weeks later I was started on Effexor. November into December I had 1.5 weeks of mucus and 1.5 weeks of blood and 1-3 weeks later I began receiving 40mg prednisone but the taper seemed sharp (maybe I just don't rememeber well from pre-2012.) I didn't seem to respond to the prednisone which I find unusual. Around the beginning of March I began the probiotic routine.