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After a diagnosis of U.C. in 2005 and having unsuccessfully tried various approaches towards maintaining remission, I had j-pouch surgeries in 2010. The past 14 years have been mostly positive, aside from occasional incidents of pouchitis and obstructions, but all mostly managed and not too negatively impacting, certainly not anywhere near as severe as the problems that I had with U.C.

However, there have various pains that come and go over the years, sometimes days or a week or two apart, and sometimes recurring more frequently (multiple times per day). These pains are sometimes in my lower or mid left side, or lower or mid right side, or lower or mid back, and sometimes a combination. When the pains are very subtle, maybe around a rating of 2/10 or 3/10, then I mostly ignore them and don't worry about them. Sometimes, such as in the last couple of weeks or so, they are more persistent and stronger, maybe around 7/10 to 8/10.

It might be pouchitis, but then again I've had ongoing pains for years, just not usually as persistent and strong, so it's unclear what the cause might be.

Do others with this type of diagnosis have these pain experiences? Is this just normal, in other words?

Thank you.

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While I am still needing to test various potential solutions that might help with reducing my recurring pain, as described, I'm particularly interested in hearing from others as to their experiences with this.

Do others with this type of diagnosis have these pain experiences? Is this just normal, in other words?

Thank you again for sharing your experiences in this regard.

Since there does not seem to be any consistency to your symptoms, I would tend to think these are related to adhesions that have been there all along. The pain you experience (in my best guess based on your description) would be related to recurring partial obstructions that clear on their own. These sorts of pains could easily be random and variable, depending on which way your gut is moving. I suppose you could pay attention to what you recently ate to see if you overindulged on fiber, but research has shown that unless you have very tight passages (like a stricture) what you eat does not matter so much. You’d be more sensitive to these minor blockages if you had pouchitis or SIBO, due to the inflammation, but it would not come and go like your symptoms. The other thing to pay more attention to is being sure your fluid intake is more than adequate.

But, be sure to follow up with your GI if these pains persist. Could be something completely off our radar (like a kidney or your stomach or spleen). Not likely, but you cannot assume everything is pouch related. Been there myself…

Jan

Last edited by Jan Dollar

Thank you, Jan, I appreciate your advice. I'll factor this into how I'm observing my experiences and keeping notes along the way. I keeping meaning to have a checkup with a GI doctor, since I haven't been to one since my two surgeries in 2010, so I'm definitely overdue. I've been very fortunate overall, though, with only occasional minor issues over these many years.

@Chris KCMO posted:

Thank you, Jan, I appreciate your advice. I'll factor this into how I'm observing my experiences and keeping notes along the way. I keeping meaning to have a checkup with a GI doctor, since I haven't been to one since my two surgeries in 2010, so I'm definitely overdue. I've been very fortunate overall, though, with only occasional minor issues over these many years.

You have not been to a GI since 2010?! That is definitely not good. You definitely should have had a pouchoscopy by now with your J-pouch, especially if you have a rectal cuff. Please do get a pouchoscopy this year by a GI. Hopefully everything is okay in the mean time. Best of luck

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