Reply to "Pouch Endoscopy Results?"

To answer your question, not necessarily, but once inflammation is seen and is determined to be chronic, it needs to be watched and should be treated aggressively. Treatment with antibiotics, and biological drugs, doesn’t necessarily eliminate chronic inflammation but can ameliorate it to the point where it is “simmering” and not interfering with quality of life. Not treating it all, however, can lead to deteriorating pouchitis and a bad situation and also could severely impact on your quality of life.

I have had chronic inflammation for almost the entire 27 years I have had a J Pouch and we have in fact succeeded in keeping it in a “simmering” state, first with rotating antibiotics, and in the last 4 years with Remicade and low dosages of antibiotics and methotrexate.

What label you choose to slap on the inflammation - Crohn’s or pouchitis or indeterminate IBD - is irrelevant. Regardless of what you call it, it has to be treated and respond well to treatment. If anyone here would rather be a pouchitis patient who doesn’t respond to treatment than a Crohn’s patient who does, then we probably need to add a psychiatrist to the battery of medical providers. 

I understand the concern with meds and side effects. I have largely been lucky on that front. I tolerate everything we have thrown at my chronic inflammation pretty well. The alternative is to not take meds and try to eat a copacetic diet. You can try that approach but if you notice a worsening of the Pouch function you should abandon immediately. You should also be scoped annually once chronic inflammation is observed (as oppose to a one off bout with pouchitis).

The perfect pouch comment makes sense to me (and my doctor did with me as well) because everyone has a baseline where things are “as good as they are going to get.” I am at mine. You may not be at yours. My Pouch isn’t perfect. Life isn’t perfect. But mine is very good. I am very thankful we have been able to treat it, and that I have had my J Pouch 27 years.

Good luck-

Last edited by CTBarrister
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×