Hi, a few things.
Firstly being afraid of surgery is normal and most of us will exhaust as many options as possible before going there. Nothing wrong with being aware of the latest research and trying different things.
That being said, surgery should not be presented as the big bogeyman of UC when the majority of patients live better lives afterwards than before. It's not as ideal as having a functioning colon but it's better than having a diseased colon and the fact is sometimes in life **** happens and our bodies are not perfect. It's been really helpful to hear from members on this forum who have gone through surgery and to hear their stories (good and bad) as a mental preparation for what may be at the end of the road for some of us. Life goes on after surgery.
Secondly, most of us on this forum are not trained in medicine or statistics and that means we do not have the insight to make a full assessment of medical publications. It's really somewhat of a flaw of
open access publications.... we can read the papers but we don't necessarily know what we need to know to assess the robustness of a study. I include myself in that, and I work full time in science and spend a good chunk of that reading papers... I just don't have the background in medicine to get all the nuances of a medical publication. Sometimes I take papers to my GI and ask his opinion. That has been really helpful. But just because I have read a paper... that does not make me an expert in the content.
On that line, surgery rates of "reaching 30%" means that 30% is the estimated upper limit. They don't give a lower limit, which has the effect of emphasising the worst case scenario. It's hard to know what the current rate is when so many new drugs come out. Another paper I found from 2021 quoted "10% to 30%". The link posted above was from 2016. Xeljanz was licensed for UC in 2018 and other jak inhibitors are following. Without xeljanz I would already have gone for surgery. There are lots of patients like me. JAK inhibitors seem to work especially well on patients who did not respond to biologics. (Likewise there is a class of patients who dont respond to jak inhibitors but do respond to anti-tnf medications). Newer drugs are coming out all the time which block different immune pathways.
Regarding hydrogen peroxide/pravda's theory/etc. If you do some cursory googling there are OTHER publications by other researchers discussing the role of redox reactions in UC. I posted one of them in the other thread on this subject. I'd be interested in hearing people's thoughts on that. My understanding is that the biochemistry is not only a lot more complex than it being all about
excess h2o2, but that different patients have different things going on in their bowel which means there can never be a "one size fits all" treatment approach.
People claiming to have found a "cure" for a disease, all by themselves, is to me a huge red flag. It will most definitely appeal to patients who are desperate and suffering, who are possibly not getting optimal treatment from suboptimal GIs. It's a much nicer world if there is a simple cure and the reason our GIs don't help us is because it's in their interests to keep us sick...
Ooh one other thing (added as an edit) Drug prices are different in different countries. In the EU, entyvio is around 1000 euros per infusion. Which is still astronomical (in my opinion), but the cost in the US is, I think, closer to 10 times that? It's good to be aware, that how things work in one country is not how the work on the rest of the planet.
Try your alternatives, and if they work, great..come back here and share it. You can do that without dissing on the entirety of modern medicine or people who decide that even if alternatives DO work for them, they prefer to work with clinically established methods or prefer the convenience of taking 2 pills a day (I've seen posts where people are taking 20 supplements....geez).
And if you're not sure what's truth or fake... try to practise discernment. If it sounds too good to be true, it probably is....
Post Edited (poopydoop) : 8/22/2022 6:50:43 AM (GMT-7)