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Reply To: Interstitial Cystitis

Reply To: Interstitial Cystitis2014-11-11T04:58:51+00:00
Pam
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Post count: 52

BearsMom – I think the resistence to testing for SIBO for those with IC is that they probably thought like I did…wow, your bowels are connected to the bladder? They are so convinced it has nothing to do with the bladder. It is the loss of the epithemal layer in the bladder that is causing the problem and so I must take all these bladder layering supplements and then there is Elmiron, thats about 200 bucks a month right there, yeah, thats gotta work. And, why has my doctor not said anything about this, and when I talk to my doctor they have no idea what SIBO is? The reason your doctor has said zero about it is they don’t know either! It is a idiopathic disease. this is why you take the documented information into the doctor and say here is something we have not looked at. Why does the IC Network not really have any reference to SIBO?

Also, the SIBO diet as I mentioned earlier is different than the IC diet. Its like when I tell someone that has acid reflux that you don’t have enough acid in your gut and to quit taking antiacids, maybe consider hydrochloric acid instead? They think I am crazy until I tell them you have reflux because your gut does not have enough acid to digest what you just ate and so it spits it all back out…then they start to think.

For ICers the DEPRESSION and chronic pain is all they are thinking about. They have not been clinically diagnosed with SIBO and until then, they keep doing the same thing and not get anywhere…isn’t that the definition of insanity?

As far as my healing, it is a long story and I did go on antibiotics and tried all the SIBO diets and took digestive aids and drink what I call my daily sludge…it was a work in progress…two steps forward one step back. By about 3 months I actually could poop normally, never knew what that was, and would not have to pee constantly. I was very, very sick and I am not 100% healed but I am mostly out of pain and not peeing all the time.