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Reply to "Possibly Crohn's"

As noted in my signature, I have been dealing with pouchitis/inflammation in my J Pouch since 1995. I was on antibiotics primarily for 20 years, and then Remicade the last 5 and Remicade cleared up the inflammation in the J Pouch, although not completely at and above the inlet. I was on much higher dosages of antibiotics than you are, rotated them, took them in tandem, was scoped annually, stayed on top of my treatment and mostly controlled the inflammation, which for 20 years was described to be in a "simmering state", and was fortunate not to develop any fistulas. Although I am strictured at the J Pouch inlet, if that counts for something. When slippage started, in 2015, I went on Remicade and there was immediate improvement based on the next scope 6 -7 months after Remicade treatment started.  I had been told to go on Remicade since around 2008 or so, but had stubbornly resisted it until the continual aggressive recommendations every year eventually wore down my resolve not to go on Remicade (and I had to wait for nearly 6 months to go on Remicade due to treatment for cancer, but that's another thread).  I have been a Crohn's diagnosis (tentative) for 13 years since 2007, but what you call it REALLY does not matter, because it's inflammation, and regardless what label you slap on it, you have to treat it.  And guess what? All the treatments are mostly the same for pouchitis and Crohn's Disease, so I call it inflammation and dispense with the mostly useless labels.  So it boils down to how aggressively and effective the treatment is for the inflammation/inflammatory response.

I never would have considered or even thought about surgery without exhausting the myriad biological drug options, but that is just my opinion.

Bottom line is: 28 years with J Pouch, 25 spent battling pouchitis and Crohn's Disease as I have inflammation above the pouch in the neoterminal ileum, possibly due to backsplash stool but nevertheless a tentative Crohn's diagnosis due to the inflammation pattern which is somewhat irregular.  I am strictured at the J Pouch inlet, but according to GI doc as long as he gets the scope through I do not need to be dilated.  And he has gotten the scope through every year, although back in 2012 almost could not, and if you look at my scope pics you will see why- just wasn't being well controlled through treatment and diet. (Lauren recently noted my scope pics from 2012 which are posted in another thread and that was probably the low point in my treatment, but I changed my diet after that to dramatically reduce carbs and sugars with noticeable improvement and weight loss).

Last edited by CTBarrister
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