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Why haven't they figured this out yet?
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Picture of JonH1985
Posted
As we all know, pouchitis generally responds to antibiotics, so it is usually related to some sort of bacterial imbalance in the digestive tract. If this is mainly a bacteria issue, I find it puzzling as to why scientists and researchers haven't been able to figure this out yet. Indeed, I've wondered for some time if there are many more subsets to IBD than just Crohn's and UC. Maybe there are 5 or 10 more distinct diseases, some of them more immunologically driven and others more related to a bacterial imbalance. That could explain why certain diets, probiotics, and medications work for one person but not the next. It could also explain why some people have more refractory pouchitis (such as IGG4) than others.

I came across this interesting article the other day:

http://www.foxnews.com/health/...-ulcerative-colitis/

The study suggests that antibiotic use may trigger the onset of IBD in some susceptible individuals. This hypothesis would tie into the bacterial imbalance theory. It makes me question whether antibiotic treatment of pouchitis is counterproductive over the long run to a subset of people, in the sense that it prevents the gut from ever establishing a beneficial bacterial equilibrium.

Last month my symptoms improved with a two week course of Bactrim DS, but they've started to return in the two weeks since I've stopped. I've been taking 4 VSLs a day in the hopes of crowding out the bad bacteria. I'm going to the Crohn's and Colitis Center at Mass General tomorrow and am looking forward to bouncing these ideas off the people there.

What do you think?


*Step 1: August 5, 2008. post-op complications: portal vein thromboses (three clots), splenic infarct, anastomotic leak, peritonitis, pancreatitis, collapsed lung, pleural effusion, hematuria, urinary retention
*Surgery to repair anastomotic leak on August 14, 2008.
*Step 2: November 17, 2009. post-op complications: paralytic ileus

"We conquer by continuing" --George Matheson
 
Posts: 154 | Location: Boston, Massachusetts | Registered: July 19, 2008Report This Post
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Although UC is genetic in my family (dad had it), it was not until I was on tetracycline for over tow years that I developed the disease. I agree with your thoughts. Please report back your findings.
 
Posts: 956 | Location: ct | Registered: May 23, 2003Report This Post
Picture of mgmt10
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That's an interesting article and a lot of it makes sense. My UC is definately genetic...lots of family history of it and I was never on antibiotics more than any other person.


Marianne

DX UC 2005 when I was 37
Tried every drug and diet....all failed
Step 1- 6/25/10 (colectomy & J-pouch creation)
Step 2- 10/8/10 (take down)
Very pleased with my results.
 
Posts: 1532 | Location: NJ | Registered: September 10, 2010Report This Post
Picture of DJBHusky
Posted Hide Post
quote:
Maybe there are 5 or 10 more distinct diseases, some of them more immunologically driven and others more related to a bacterial imbalance.


I think subsets where a combination of both come into play cannot be discounted either. What makes sense to me is that someone with an underlying genetic pre-disposition towards IBD may have that pre-disposition triggered by consuming antibiotics. I think this cited study tends to support this conclusion.


DJBHusky
UC - 1972 as a 9 year old
Takedown 1992
Chronic Pouchitis Onset 1995
Still J Pouching 2012
 
Posts: 1527 | Location: Connecticut, USA | Registered: April 12, 2007Report This Post
Picture of JonH1985
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Thanks for your feedback, guys. I had my appointment at Mass General and didn't learn much
that I didn't already know. Doctor put me on Xifaxan 400mg three times a day, but I could tell it wasn't working well, so now I'm back on Bactrim for three weeks and am then supposed to go on Xifaxan for one month.

I may ask to see a different doctor because I wasn't really satisfied.
 
Posts: 154 | Location: Boston, Massachusetts | Registered: July 19, 2008Report This Post
Picture of Jan Dollar
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The big problem is that IBD is more complex than anyone ever realized. So far, through the human genome project, they have discovered 99 loci associated with IBD. This explains, in part, the reason why treatments have such a widely variable effectiveness. Plus, you cannot assume that bacteria are the cause of the inflammation (in those who have demonstrated the association). It can just as easily be our altered immune response to the bacteria, and possibly more likely. This is why someone with the genetic tendency for IBD develops UC or Crohns after a gut infection or course of antibiotics, when the vast majority do not. The bacteria are just an environmental trigger. Currently, IBD serologies are not specific enough to really be reliable treatment guides, but we hope to get there in time.
IBD Genetics

So, the reason they haven't figured it out is because there may be so many triggers, and so many variations of the disease (probably much more than 5 or 10). But, they are working on it. The goal is to determine who is most likely to respond to a given treatment, so hopefully the correct treatment will be given at an earlier point, rather than wasting time and resources on ineffective treatments.
Clinical Advances

Jan Smiler


Take a deep breath and relax; this too will pass.
 
Posts: 19088 | Location: Fremont, CA, USA | Registered: April 07, 2000Report This Post
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I find it slightly unbelievable that the medical professionals don't explore a greater realm of possibilities in addition to bacteria. Also, regarding genetics, I guess I am not sold as I think it is more a convenient excuse to continue to treat disease (IBD or otherwise) instead of healing individuals of these maladies. I guess we all have to pick our paths regarding how we manage our disease or heal ourselves. All I know is that ignorance is not bliss. Whoever generated that saying lied.
 
Posts: 880 | Location: GA | Registered: April 30, 2007Report This Post
Picture of JonH1985
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Thanks for your input and interesting links to articles, Jan. I found them very informative, and to a certain degree, encouraging.
 
Posts: 154 | Location: Boston, Massachusetts | Registered: July 19, 2008Report This Post
Picture of Jan Dollar
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Yes, it is a mixed bag. While it is encouraging to know that progress is being made in regard to unraveling these diseases, it is discouraging to find out that the more they learn, the more they discover that needs to be understood. Kind of like trying to untangle the mess your fishing line can become!

Jan Smiler


Take a deep breath and relax; this too will pass.
 
Posts: 19088 | Location: Fremont, CA, USA | Registered: April 07, 2000Report This Post
Picture of toughenough
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I went to an alternative medicine MD while I had UC and she put me on cipro and gave me a hydrogen periozide infusion, just with a small %age like 5%.

My primary care physician said that they were starting to treat stomach ulcers with antibiotics so it made sense. She prescribed me Cipro for several flares and it worked for a while until it didn't. (My GI didn't think it would help.) I'm wondering if a rotation of antibiotics could have kept some of us from needing j-pouch surgeries?


~~~~~ You can't change the direction of the wind, but you can adjust your sails ~~~~~
 
Posts: 2342 | Location: Iowa | Registered: January 22, 2011Report This Post
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