Am...am I cured?

A few of you have been following my threads about going to Mayo Clinic and stumping them with the fact that my UC responds positively to Vancomycin and Augmentin, despite continually testing negative for everything in the book. It took me forever to convince doctors that there's something to this, and maybe we should try it again.

I was on Vancomycin for almost four weeks this time, as opposed to the two weeks I had done before. Please note that when I started the Vanc, I was at my worst I had ever been: 10+ uncontrollable watery D restroom trips a day, and 3+ at night. Strangely though, this time I hit a point where I plateaued after about two and a half weeks. Solid stools, but going numerous times a day with urgency. So my doc stopped it at three and a half weeks.

For about a week after cessation of Vancomycin, nothing changed, no downward turn and no improvement. Historically, a week after stopping Vanco is when I'd start getting D again.

Then at day 7 -the day I would normally start getting my D back- I suddenly had an ENORMOUS increase in gas, but my stools remained solid. I mean ridiculous. As in, once or twice every thirty minutes, I'd rip a really, really, really big long one. This is a marked difference from the last year, because this entire time I've had UC, I've barely had any gas at all. That has been one of the hallmarks of my condition -a strange almost complete lack of any gas at all.

This increase in gas did not happen after the other times I was coming off Vanco.

After two days of ridiculous gas, the gas began to get better. My stools still remained solid.

After that, miraculously....I began to get even better than when I was on Vancomycin. Each day, better and better. Normal gas, mostly normal bowel movements, stools more and more solid by the day.

I am now four weeks post Vancomycin, and I am having one solid, formed, minimally urgent bowel movement in the morning, and nothing the rest of the day.

And keep in mind, I just evacuated from the strongest hurricane in history in the Atlantic basin -to say I'm stressed out would be an understatement, so if it was going to worsen due to stress, it would have done so by now. I drove *twelve hours without having to stop.*

Prior to starting the Vanco, my doctor stopped my UC meds because they were obviously not working. I am not on *any* meds right now.

I think the sudden huge increase in gas was bacteria suddenly flooding back into my system after Vanco and battling it out for dominance. This time....the good guys must have won?

Infectious Colitis? Not only did I repeatedly test negative for everything, my colonoscopies and biopsies confirmed UC three separate times in under a year. Is it possible that UC is actually indeterminate infectious colitis?

'Autoimmune disease' my butt. I am now 100% convinced UC is a bacterial issue. 'Autoimmune' means your body is attacking itself. If your body is reacting to the presence of unwanted bacteria, it is not 'autoimmune.'

Post Edited (Canaveral) : 9/9/2017 11:14:52 AM (GMT-6)

WOW !

I am one who has been following your journey, Canavarel.

This is really fantastic news. But it's also very amazing news. It's right at the core of what I've always wondered myself.......but have then gotten sort of hemmed into the "autoimmune" idea again because of that genetic test my doc had me take awhile ago and the biopsies that showed architectural changes.

Are you saying that your biopsies ALSO showed cell changes?

If so......this theory is back on my radar. I need to think seriously about this again. I wonder if everyone has a dysbiosis at the root of their UC. And the offending bacterial or viral causes go undetected. Maybe they even hibernate ? and hibernation would be the periods of 'remission' we all get?

Maybe due to all having different degrees of infection from different bacterias......that explains our different courses of symptoms. And also why some respond very quickly (less dysbiosis) and others take forever (a larger more hard to manage infection)?

And different bacterias response to different antibiotics, etc....

I have always in the back of my mind wondered this. Even the mucosal changes could be explained by it, maybe the bacterias in question are ones that just aren't on the medical communities radar thus far?

Holy smokes am I happy for you !

Canaveral said...
I am now 100% convinced UC is a bacterial issue. 'Autoimmune' means your body is attacking itself. If your body is reacting to the presence of unwanted bacteria, it is not 'autoimmune.'

I see what you are saying, quincy. Actually my rigid thinking is showing again. I guess this scenario could play out for some, but not necessarily all.

But Canavarel, this is precisely what you've suspected all along. Are you thinking that you might have UC in addition to a bacterial infection----or JUST a bacterial infection?

I guess the two are not mutually exclusive.....

And yes, please stay safe.....sending love and prayers to everyone in Florida!

quincy, have you ever wondered if bacteria can reduce in numbers and then become benign (remission), but then have some stressor or something create a dysbiosis and then experience a new flare?

I wish you'd have been stool tested, too. Blows my mind that you weren't with that much D.

And in hindsight I wish I would have been stool tested, too. I'd already had symptoms for months before going to the doctor though ---and there were many weeks of healthy BM's and no symptoms between my food poising issued the UC symptoms.

NiceCupOfTea said...
The one time I tried metronizadole, it was so grim I've never really wanted to try antibiotics again.

Metronidazole did not work for me at all.

MarjieKay said...
Are you saying that your biopsies ALSO showed cell changes?

Yep, that's correct.

MarjieKay said...
Maybe the bacterias in question are ones that just aren't on the medical communities radar thus far?

That is my thought. Either that, or it's severe dysbiosys.

NiceCupOfTea said...
Must admit, infectious colitis was my first thought, particularly as you don't mention having blood and mucus - two classic UC symptoms. Perhaps in your case 'UC' was a bacterial issue.

I did have a little blood at the very beginning, but not much, and it went away after a few weeks. I did also have mucous, but more than anything I had an insane amount of bright atomic yellow bile.

quincy said...
I would suspect they didn't test you for everything.....and UC diagnosis is a process of elimination.

They tested me for everything they currently test for, numerous times.

quincy said...
Do you know where your inflammation location was stated on your c-scopes?

I had pancolitis. Severe pancolitis at first.

quincy said...
When is your next scope?

No idea and I don't want to think about it.

quincy said...
Are you now staying with family members? Sad to hear your life has been turned upside down because of the hurricane. Keep us updated on how you are doing.
Hugs,

Will do! I am holed up in a hotel, lol.

MarjieKay said...
But Canavarel, this is precisely what you've suspected all along. Are you thinking that you might have UC in addition to a bacterial infection----or JUST a bacterial infection?

I guess the two are not mutually exclusive.....

And yes, please stay safe.....sending love and prayers to everyone in Florida!

Thank you!

I think UC is a bacterial issue. If I had two seperate things going on (UC and bacterial), I would still be having UC symptoms because I am not on any meds at all right now.

I think it's possible that there are two different 'brands' of UC: one bacterial and one autoimmune.

I also think that doctors don't want to even consider the possibility that there is a brand of UC that is bacterial, because A. Throwing an 'autoimmune' diagnosis at it is much easier (and much more profitable), B. They are too lazy to be bothered to get to the bottom of a disease they do not understand, and C. Perhaps most importantly, doctors are in bed with big pharma. These reasons are why my doctor would always wave off my positive reactions to Vanco and Augmentin as 'coincidence,' despite my pleas to investigate it further. He'd rather just pump me up with Remicade. (Which, surprise, didn't work.)

Watch. If I am correct, they will NOT use my case as a wake-up call to investigate the obvious bacterial cause further. It's just too much work for them with too little profit. I will bet you anything they'll just sweep it under the rug as 'an anomaly.'

quincy said...
My symptoms are classic UC and remember that if it was bacterial, it wouldnt follow the upward inflammation and downward healing.

Oh contraire, mine followed the pattern of upward inflammation and downward healing. In fact, this is one of the facts that my doctor used to dismiss my suggestions that it might be bacterial. And yet, here I am.

Ok, so......nobody here disputes that bacteria plays a role in UC.

The issue I am really wondering about is that if the antibiotics knock down your bacterial load successfully, then symptoms dissipate. This is WHERE YOU ARE NOW.

Would you be willing to entertain the idea that UC is not a 'bacterial infection alone' if your symptoms return in 3 months, 6months, whatever?

Or would you then think that there were hidden microbes that stayed behind and are now proliferating and once the numbers are high enough become a new infection? (using that term since we are already doing so-----even though I am talking about commensal bacteria).

I am sorry I ask so many questions, but I am trying to understand all of this.

Your immune system is now calm, but when the bacterias that irritate it are reintroduced, I am wondering if this cycle will continue?

Because it seems that these two things could be true at once. The bacteria are an issue, but only because our bodies respond to them in a warped manner.....you know? the very same bacteria (commensal) don't bother most people, but bother us?

Have you wondered, Canavarel, if the longer term antibacterial just knocked more of them out?

I suppose time is going to tell, right?

I hope this is IT, too......for now I am just super happy for you, as I know how frustrated you were. To hell with that hurricane!

Post Edited (MarjieKay) : 9/9/2017 2:06:43 PM (GMT-6)

It is not uncommon for IBD to respond to antibiotics. Many researchers think one of the triggers for IBD in some people (in addition to having the genetic predisposition) is gut bacteria - e.g. our immune system overreacts to the healthy, normal bacteria in our gut (thinking they are pathogenic and therefore sounding the auto-immune alarm). Reducing the amount of bacteria by taking antibiotics can get the immune system to back off.

If it were me, the way you've responded to antibiotics would not deter me from thinking UC is an autoimmune disease.

Fingers crossed for you that this state holds for you. Also that when you get home everything is ok and gladto hear you are safe and sound.
I firmly believe that UC and bacteria are linked in some way (dysbiosis being a huge factor) and I hope your case can help Mayo Clinic folks see that UC has many faces and requires individualized treatment. The way my own case developed, post antibiotic and prednisone induced D for a week followed by normal stools plus mucus and then bleeding, leads me to believe that some bacteria took hold of my gut and that triggered UC.

I read an article on here about researchers finally understanding how asacol works and it has to do with preventing bacteria in our colon from colonizing and growing:

http://www.ns.umich.edu/new/releases/24475-u-m-researchers-discover-what-makes-drug-for-ulcerative-colitis-tick

Fusobacterium varium - You can look into the above if you are curious in regards to bacteria and UC.

Not sure where things stand with any research, but there are/where some positive case studies out there. It was researchers in Japan that Identified it.

Actually there is an old thread on here from someone with UC who was treated for it. www.healingwell.com/community/default.aspx?f=38&m=931117

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How/why it worked for you does not matter though really. All that matters is that you tried something, it worked and now you get back to living life! Awesome on the progress no matter how it was achieved.

PS - Long term Vancomycin is used for controlling UC in children with some success. But there are some on here (adults) that have taken it for c-diff with no effect on their UC.

I too think that bacterial infection may play a role. A Western Blot test I did last fall shows I am positive for IgG P41 Ab. Having no idea what that was I googled it, as you do, and found this research paper which makes me think my UC may be due to some bug:

“p41 is found on many enteric pathogens such as Campylobacter, Giardia, etc. The immune response to p41 is HIGHLY specific. p41 activates Toll-like receptor #5 (TLR5), and another (minor) pathway. Furthermore, p41 is the only known activator of TLR5. Recently, it has been shown that TLR5 knockout mice develop severe colitis”

There are several related pub med articles.

FlowersGal said...
I also think there is some kind of bacterial dysbiosis that throws off the immune system and makes it go all whacky! .

OR......does the whacky immune system CAUSE the bacterial dysbiosis to begin with?

After seeing my prometheus IBD sgi diagnostic tests results it seems pretty conclusive about the genetic predisposition part.

So maybe if our immune systems functioned like everyone else, we wouldn't have a problem with the bacteria?

I prefer the idea of this being caused by bacteria.....then we can simply restore balance and be on our way. And maybe for some people (like Canavaral) it really is that simple?

It's the 'immune defects' that is the interesting wording in the above - Most where fine when younger until one day... why all of a sudden does the 'immune defect' cause issue? Have people with IBD always had a particular immune defect? Could something (environmental) be a trigger? Chemical, bacterial, other. etc etc etc.