I was diagnosed with UC in the winter of 2005. My first flare was brought about
after a bout of really bad gut bug of some sort. My roommate at the time (I was in college, 26yrs old) was a Nurse Assistant at a nearby hospital, and regularly ‘brought home’ nasty gut bugs (presumably caught from patients). This particular one was the worst I’d had – black coffee grounds type BM’s, accompanied by significant discomfort and diarrhea. I had no insurance at the time so was using the Phoenix VA (I’m a former Marine). They suspected C-Diff, and prescribed a course of Flagyl. Well, I took the Flagyl, and the nasty gut bug symptoms ‘transitioned’ to an extreme UC flare over the course of a week or so. So, from black coffee grounds to pure liquid plus large amounts of blood. Due to it being the Christmas season, I couldn’t get a GI appointment at the VA for a couple of weeks – so I wasted away on the couch, losing a good 15-20lbs during that time (normal weight is ~165lb, without much fat – so, I was skin & bones). I had no idea I was having a UC flare, as I had no idea I had UC at all – and none of the GP’s at the VA correctly diagnosed the issue. As soon as I was correctly diagnosed, and treated (heavy doses of Prednisone is what worked), the flare was brought under control – but I could not get off the prednisone without the flare returning. So, I eventually went on Imuran, which allowed me to taper off and stop taking the prednisone. However, the efficacy of the Imuran waned after about
3 months, and started slowly veering towards another flare…
Now, my father had UC. I say had, because he eventually had to get his colon removed. That last flare was so bad, he seemed to age 20yrs over the course of that last year before they removed it (and, he’s never really been ‘healthy’ ever since – suffering many nagging health issues that he never had before – I blame the lack of a large portion of his intestinal system, but that’s another subject).
My father was a life-long smoker of cigarettes. He noted that every time he quit smoking, his UC came out of remission and he suffered extreme flares. And, this is before there really was any UC diagnosis (it hadn’t really been widely identified as a disease yet in the medical world) – so all he could find to do to keep it under control was to go back to and keep smoking – as the smoking kept him in ‘remission’. Well, around 2003, his doctor told him he was at high risk of developing emphysema. So, he had to quit for good. And did. This is when that last flare occurred, leading to the removal of his colon.
I tell the above story because I was in the exact same boat. I had been smoking a pack a day since I was 16 or 17yrs old. I quit in the winter of 2004. Cold turkey. I was done, and happy as could be to be a non-smoker finally at 25 – as I was (and still am) a very active person. I always worked out, did a lot of hiking, biking, motocross, snowboarding, etc, and ate very healthily for a 20-something. My only unhealthy activity was smoking. And, I had finally kicked that habit.
Well, back to that first flare (now the spring of 2006), and I could not get off the prednisone. At the time I did not know that my dad kept his UC under control by smoking (he never spoke about
it). Well, when he noticed that I couldn’t kick the prednisone/Imuran cycle, he made the suggestion that I go back to smoking – or at least try to see if it might help get my UC back into and stay in remission. He took no pleasure in making that suggestion – nor was it met with any pleasure on my end. Well, I eventually did so – after trying about
everything else available to me at the time – mesalamine (oral, enemas), hydrocortisone enemas, bee propolis, aloe enemas, etc (I can’t remember all the ‘remedies’ at the time, and VA didn’t offer a ton of options – not that many were available at the time) – I relented and started smoking again. And, wouldn’t you know, it worked like a champ. UC symptoms gone, with zero meds, within a couple weeks…
Over the years, I have attempted to quit smoking without the UC coming back – to absolutely no avail. By this I mean, anytime I quit smoking (which I’ve done successfully 6 times now, and really sucks to do each time – it’s very hard to kick), I can count on the UC returning (with a vengeance) within 2-3weeks if not aided with meds, 6 months max with meds (Imuran in my case). I’ve desperately wanted to be a non-smoker ever since I quit the first time, but had to make that terrible trade every time. And, with life being what it is (kids, work, life…), it’s an easy decision which to live with.
Over the same years I’ve kept my ear to the ground on UC medications, treatments, etc. Several years ago, I first heard about
fecal transplantation – and after looking into it, found that some significant percentage of folks that undergo the process (30%+ if I recall the journal article I read) achieve remission of their UC. Now, this is a really big deal if you think about
it. If UC is an immune-system deficiency, then how could fecal transplantation possibly provide any effective relief of the disease? In essence, this is a gut bacteria/flora ‘swap’ or ‘redo’. This would have no discernable effect on the immune system - except of course if the immune system attacked the ‘new’ material – which clearly is not generally the case with this procedure. So, I think the fact that this treatment provides any statistically significant efficacy provides very strong evidence that UC is a gut flora-related disease, and NOT an immune-system deficiency. Granted, I had always suspected this to be the case – as I did note that many folks with UC experienced their first flare following a heavy dose of antibiotics. I also noted that some folks have found remission through homemade-yogurt-only replacement diets (designed to starve out all but a few known, non-harmful, bacteria types in the gut). This, and my own intuition based on the way UC feels and looks and smells – always had me suspecting that it was a gut flora-related disease.
I’ll admit that I self-identified the possibility of confirmation bias when I discovered the efficacy of fecal transplantation, and certainly could still be suffering from it. But, that’s why I’m writing this.
At some point, I determined that if UC is indeed gut-flora related, and that the aforementioned treatments essentially eliminate the existing gut flora and replace it with some other flora, then there must be another way to do the same. I figured that taking a strong, full-spectrum antibiotic could essentially act as a bacterial ‘nuclear bomb’ in the gut.
And, that if said bomb was followed up by larger than typical doses of probiotics, then the gut flora could be effectively ‘swapped’. So, I waited until something came along that required such an antibiotic (as I have no access to such things any other way). In August of 2017, I came down with ‘walking pneumonia’ or really bad bronchitis (no doubt exacerbated by my smoking) – to which I was prescribed a Z-Pac (a 5-day course of strong full-spectrum antibiotic - azithromycin). So, I began my experiment…
It should be noted that even while being a full time smoker, I regularly had blood in my stool, some mucous, etc. Any time I’d be low on sleep, or have any other kind of notable stressor in life, the bleeding and/or mucous would sneak in there. Not much mind you, but just enough to remind me that it was there… Also, I’d had many preventative / regular colonoscopies in the 10 or so years between that first flare and my ‘experiment’. They all showed obvious UC. But, the smoking seemed to keep the UC in symptomatic ‘remission’ – aka, it just prevented the UC from flaring, but didn’t cure or treat the UC itself. And, I’d had a colonoscopy just a couple months prior to my experiment confirming the same…
On the third day of my Z-Pac, I started taking probiotics - 2 pills, twice per day, for about
2 weeks. The first thing I noticed was a quick and complete change in the general nature of my gut. BM’s were different (in shape, color, smell, etc), my gas smelled different, and the light UC symptoms had completely disappeared. After that first couple weeks I backed off the probiotic usage, to one or two pills per day. The probiotics seemed to give me pretty bad heartburn (something I never really got before –another indication of a sea change in my gut), so I stopped taking them after a number of months. My ‘new’ gut seemed to remain consistent without the probiotics for months, and I had not seen a single drop of blood, or hint of mucous. At that point, I was beginning to get pretty excited…
I wanted to get another colonoscopy and a consult with a GI doc before I attempted to quit smoking again. I knew there were a bunch of new medications out there, and wanted to be prepared for them before I ever quit – as if a flare started, I needed to get on the meds super-fast in order to avoid a full flare (something I’d not had in years at this point). So, I did both. And, the colonoscopy showed complete histological remission. This is to say, no physical evidence of UC. At all. Gone… A first since 2005. This was in December of 2018.
So, it was time to try quitting smoking again. I did so in April of 2019, nervously. And, hallelujah, to this day (August 14, 2019), I am both smoke free and UC free… Symptomatically at least.
After the first couple of weeks of quitting, I started getting some blood and mucous in my stool. While this was concerning, it was mild. And, usually I’d be in a full flare by then. Well, I decided to take another Z-Pac (I’ve since acquired some reserves) & probiotic course. Worked like a champ. Blood and mucous gone after a couple days. But, a couple weeks later, the blood & mucous started to show again. Now, I know the potential issues associated with antibiotic overuse, so I did not want to have to keep cycling with Z-Pacs.
At that time, I quite randomly and fortuitously ran into an acquaintance who just so happens to be extremely well educated on human immunology. He literally owns a pharmaceutical company (not his first either) that is trailblazing new treatments for disorders like UC. I described this story to him, and he found it to make perfect sense. If there is a type (or types) of bacteria in my gut that my body finds irritating (aka, virulent), and its relative population increases to some point, then UC type symptoms may result. By taking Z-Pacs and following with probiotics, I’d be effectively reducing the population of virulent bacteria with the Z-Pac, and ensuring that it is highly outnumbered by following with the probiotic. It is at that point that he explained to me how ‘bacterial quorum sensing’ operates. Basically, this is the trait in bacterial colonies that allows them to communicate the overall relative numbers of bacteria of their type in the given space. This essentially regulates their level of and speed of replication. If the virulent bacteria sense that their numbers are nearing a majority (or some ratio they find gives them an advantage), then their replication rates will explode – vying to take over the space. It is my (and his) suspicion that this is the mechanism that causes UC - That UC symptoms are simply a result of the body mounting an immune response to a virulent population of bacteria that arises in the gut. This could explain why it ebbs and flows and is so reactive to various foods and medication -and often differs widely from patient to patient. Everyone’s flora is different, and folks may have immune reactions to some virulent bacteria and not others.
Well, now back to the antibiotic overuse problem. Recently, new medicines have been developed and are being developed to manipulate the bacterial quorum sensing mechanism – thereby giving us a level of control over the replication (infestation) of ‘virulent’ bacteria – without traditional antibiotics... A friend of my friend just so happens to own a company that makes a consumer-accessible product that works on this quorum sensing mechanism. It’s called LiveLeaf. So, I got some from Amazon, and started using that whenever the blood and mucous ticked up. And, guess what? It works as good as or better than the Z-Pac. And, there is no need to follow it with probiotics, as it simply controls/keeps down the population of the virulent bacteria – leaving the benign flora alone to populate the gut…
So, at this point, I have not had a cigarette since April. I still get a small amount of blood and mucous in my BM’s every now and then, but nothing concerning at all. I had a couple little scares in June, but knocked each down with a dose or two of LiveLeaf. I will say, clearly, this method provides no ‘cure’ for UC. But, given my history, it is extremely effective – more so than anything else I’ve tried from the pharmaceutical or herbal/supplemental remedies. And maybe most important, I believe this is near absolute proof that UC is gut bacteria/flora-related, and NOT an immune deficiency. Simply put, I believe the GI docs and researchers have been barking up the wrong tree completely.
Now, I’ve got nothing to sell here, nothing to gain. I have no connections to any pharma companies, probiotic makers, or the LiveLeaf people. The LiveLeaf was recommended to me by a smart friend and it’s worked like a champ for me. I’m still on the first box actually…
I had been battling UC (either via smoking or in horrible flares) for 15years. This worked very well for me. Maybe I just got really lucky and found a non-pharmaceutical (or surgical) solution to managing my UC, and it may only work for me. However, given the success of fecal transplantation, I believe most UC (and maybe Crohns) sufferers may benefit from this. I hope a lot of other folks give this a try and see what happens (not much to lose in trying this as far as I can tell). If it does work, or at least have a significant effect on symptoms, then hooray for us all! And, if enough folks show results from this, the medical researchers will surely start down a path laid by this treatment – and hopefully develop a way to completely eradicate whatever virulent bacterium that causes UC in folks.
So, please try this if you feel so inclined, and let me know what happens for you (if anything). In any case, I hope this may help someone else find relief from the hell that is UC - and maybe even save a couple from lung cancer as well (like myself, hopefully).
A couple notes:
- I have no idea how effective this ‘treatment’ might be during a full flare. I imagine it’d be far too late to rely on LiveLeaf (or some such quorum disruptor) to level out the virulent bacteria ratios. However, if it truly is bacteria related, then the Z-Pac + probiotics course should have some effect. This is complete conjecture of course, but if it were me, I’d give it a shot as there ain’t much downside if it doesn’t work (aka, no discernable side effects as compared to prednisone, etc).
- Here are the exact products I used. I include the probiotic because it’s specifically what I used, and the particular bacteria included may have contributed to the success of the process. Or, it may not matter much at all. I have no way to know. So, use this if you want. Use something else if you want. Dr. Cruz was my GI for some time. She’s a great doc, and person, but she has no idea I’m writing this, and there is no financial affiliation – just full disclosure.:
Links have been removed, rule #4 states no links for advertising of products!
Post Edited By Moderator (straydog) : 8/15/2019 9:45:22 AM (GMT-6)