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Hi everyone, I need some help.  I have had my J-pouch for almost 23 years.  I've had my normal ups and downs, a couple of bowel obstructions, and a few setbacks.  But, for the most part, I have done well.  I was diagnosed with PSC in 2016 and have been able to maintain very well, with no progression for 6 years.  In 2019 I had my gallbladder removed and feel like I have struggled a bit since then.  The surgery was a hard one because my gallbladder was tucked deep underneath my liver and it was hard to remove it.  It took me a couple of months to get on my feet again.  Since then, I have had pain in my sternum that the doctor says is acid reflux.  PPIs seem to help but it seems there is more going on.  I feel like I have so much indigestion (constant gas and burping), headache, pain, and extreme tenderness in my sternum after I eat, bloating, and cramping.  I have had CT scans, ultrasounds, and the works on my sternum pain, and they have found nothing.  They have tested for C-diff and found nothing.  So, I suffer and try to tell myself it's just acid.  Then it gets really bad and the doctor says it seems like it is pouchitis symptoms and I go on Cipro.  For the last week and a half, it has been 750 mg twice a day.  I put myself on that much because I was hurting so bad.  When I am on Cipro, I feel excellent, with no gas, bloating, or pain in the sternum, and I can eat without hurting.  This tells me it is a bacteria, right?  But, it definitely doesn't feel like the pouchitis I have had in the past where my lower back hurts, I cramp, and run a fever.   Every time I go off the Cipro, I am back to the burping and pain within hours.  It just doesn't seem totally consistent with pouchitis symptoms, because it seems to be all in my stomach.  At this point, the doctor would like me on 250 mg of Cipro twice a day for eight weeks.  I just thought I would reach out to this group to see if anyone has had similar experiences or has any advice.  Mainly that pain in the sternum and such horrible indigestion.....

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Pouchitis doesn't generally cause indigestion or heartburn (or substernal pain). One off-the-wall possibility is that you could have Helicobacter pylori (the bacterium associate with peptic ulcers and gastritis). Cipro isn't usually used to treat it, but it can work against H. pylori if the stomach acid is reduced (e.g. with PPIs) at the same time. There is an easy breath test for H. pylori, though sometimes a blood test is done or a tissue sample is taken during endoscopy. Good luck!

@qdm posted:

Thank you for this helpful feedback.  I have taken large doses of PPIs for over two years now.  Either pantoprazole (40 mg twice a day) or omeprazole (20 mg twice a day).  I rotate about every six months if seems to stop working.  That seems like a lot, correct?

Yes, that’s a lot of acid blocking. If you’re having breakthrough pain (which is what it sounds like to me), then it could be a few things. You might need to try a different acid blocker (i.e. they aren’t working any more), you might have gastritis or esophagitis or an ulcer, or one or two other things. I was in a similar situation earlier this year and I chose to have an upper GI endoscopy, mainly to ensure that my years of reflux hadn’t caused a Barrett’s esophagus, which presents a cancer risk.

I am going through the same issues. I had my reversal 24 years ago. 6 years ago I had my gall bladder removed and have been on acidic blockers but they don’t work anymore. It is like having an ongoing gall bladder attack - every night for three months. I have a couple of other medical issues that I need to work through but figuring out how to overcome these new challenges the gall bladder removal have caused is high on my list.

Karrine, do you also feel the only way to manage the pain and diarrhea is to be on cipro.  I can’t figure it out.  It seems the cipro definitely does something in my system that helps. But, I don’t want to stay on it forever.  I get really an intense pain and burning in my stomach in the night also.  Have you experienced this?

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