Posted 1/30/2021 6:02 PM (GMT -6)
Been a long time since I've posted here but recently I've been able to improve things significantly.
DXed with UC in 1986, been on varying dose of Prednisone (10mg-60mg) along with cortenemas. Until I started experimenting with supplements and dietary changes around 1996 things were barely under control. My inflammation would be manageable some days and others not so much but I was usually well enough to work. In 2017 I developed a bladder colon fistula and the docs forced me to get a colectomy. I had avoided surgery for over 20 years because removing my colon couldn't possibly treat what I thought was a systemic issue. While the surgery went OK, I soon developed Pyoderma Gangrenosum by my stoma. Given that I was supposed to be "cured" I knew my docs were wrong. Eventually I tamed my PPG with Bupropion for the neuropathic pain and Melatonin which seemed to reduce inflammation.
A few months ago I was trying to figure out why my mom had recurring UTIs that had left her bladder in "end stage". I put a few ideas together and deduced we may have hemochromatosis. I had read about treating IBD with iron chelators but the drugs used in the study were prescription only. Further research on the subject revealed that IP6 aka phytic acid and lactoferrin could possibly work as a substitutes. I also learned that Melatonin is an iron chelator so the evidence was accumulating. I had experimented with Melatonin supplements once around 2006 but when my urine turned rust red I stopped because I didn't understand this was actually a good thing.
One paper I found described a condition where certain strains of E.coli bacteria could hijack the body's iron transport mechanism and cause severe recurring UTIs. The study showed treating mice with desferrioxamine reduced bacteria count and associated inflammation. One interesting nugget in said paper was that mycobacterium tuberculosis - a relative of mycobacterium paratuberculosis which is associated with Johnnes disease in cattle and possibly CD - was also capable of manipulating the iron transport system.
I was taking IP6 until early January and saw impressive improvements such as a 10 point drop in my blood pressure, enough energy to regularly work 10/12 hour days and most importantly a major decrease in rectal stump bleeding. I have now switched to lactoferrin to see if it could be more effective without chelating calcium like IP6.
While I have never undergone genetic testing to see if I or my mom may have hemochromatosis, my dad (who had Crohns disease) was part Irish and my mom's family came from the UK in the early 20th century.
Side note - this post may be edited to include links to the studies mentioned above.