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6 replies

longer term question

R RoMember
im wondering from long term pouchers or people in the know,

is it possible to have a bad week/two weeks/month WITHOUT it being something like pouchitis, cuffitis, stricture?

and by "bad" i mean that ive been feeling more burn, swollen/pressure/inflammation, more trouble than usual emptying. (frequency hasnt necessarily increased). and overall just more irritated.

i ask because i am nine months post takedown, and i had what i have gleaned from this forum as typical adjustment difficulties, but feel like i have continually made progress (albeit slower than what i believe is normal). and i have had some minor setbacks or a bad couple days that i have recovered from.

but this "bad" period has lasted longer than expected, to the effect that i feel like ive moved backwards sort of.

so again, is it possible to have a bad period and recover from it without it being an actual problem requiring treatment? does the pouch ever just have an angry period for seemingly "no reason"....or does it ever magically start not liking an excess of things it hasnt had a problem with before?(i ask this last question because just as you can have a problem with some food and however many months later it will go away, i wonder if the opposite can happen.)

(i would imagine there will be some questions or suggestions that its diet related, but my concern is that i havent really changed much if anything about the way i was eating 2 months ago when i felt like i was getting along somewhat more normally. also to answer ahead of time, i do not have any bleeding at the moment.)

i also know i keep asking "is it possible" and i know anything is possible and everyone is different, but i want to know if people have experienced this, or if it seems unusual.

thanks a lot for any input.
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mgmt10mgmt10Member
Yes, I experience this from time to time so I know exactly what you are talking about. It will have no rhyme or reason to it. These episodes for me usually do not last longer that a few days but have lasted up to a week but not longer than that. I couldn't tell you why....I wonder myself. The only correlation I can think of for myself is that when it is nearing the time of month for my period, things get a little crazy with my pouch. So maybe for women it can be hormonal? (Not sure if you are male or female) Having said that, it has happened as well not near my period so it's just a bit of a mystery. On a whole, my j pouch works fine and I have no issues. No pouchitis yet...knock wood and it's been 2.5 years.
CTBarristerCTBarristerMember
The only bad period I had in 20 years that was NOT due to pouchitis was in the 1990s when I had a problem emptying the pouch and a "septum" was found to have developed in the pouch and was the cause of the problem. This was fixed surgically. I knew it wasn't pouchitis because I physically could feel the stool "hitting a wall", and thus I knew something was structurally or mechanically wrong with the pouch.

This is different than the usual problems I have evacuating during a bad pouchitis flare, when I have the sensation of incomplete evacuation due to the inflammation from the pouchitis. This sensation is characterized by the feeling that all stool in the pouch is not coming out, whereas when the pouchitis is well under control, I will have the feeling of "clean evacuation" and an empty pouch when I get up off the toilet seat.

Some newer people are expecting pouchitis to be like UC all over again and they don't know it when they have it. It's more subtle. I believe I had untreated pouchitis for many, many months before it was identified as such and treated. I was dismissing it as not pouchitis because I was expecting pouchitis to be so much more terrible. It actually does get terrible when it festers untreated for a period of time.
Last edited by CTBarrister
Scott FScott FMember
I can think of a couple of possibilities:
1) Some folks with inflammatory bowel disease also have irritable bowel syndrome. It's unpredictable, and colectomy doesn't cure it.
2) Some pouch issues can come and go. Pouchitis isn't a simple infection "cured" by antibiotics, so it can wax and wane. That's certainly been my experience.
3) Some dietary changes are very subtly. Consider (for example) whether the volume of food you eat may have changed.
--Scott
R RoMember
thank you Marianne, that is good to know. i am a male, so i dont have that going on. but the way you worded that makes sense.

CT, that is interesting. i havent quite had that feeling you describe. it really just feels swollen or irritated. thank you for your input, i know i need to go in soon anyways, so that is also good information. very good point about expecting pouchitis to be as bad as UC was! i didnt think about that at all!

scott, you also have some very good points. i had never had IBS to my knowledge and dont hvae dairy or gluten issues, but i hear that those can develop without rhyme or reason. another good point about subtle dietary changes, and even the volume comment is agood point. i suppose the pouch could get mad about putting in overtime if volume is increased.

as i write today, some of the symptoms have subsided like the swollen feeling, but the burning is still annoying/distracting.

i suppose maybe not everyone can expect to get to a normal and NEVER have issues again, so im trying to understand and accept that there might just be times where things arent great.

still interested in seeing if others have had this type of a feeling/though/issue.

and rsz, i definitely plan on going in at some point in the near future. i just like to see what others have to say before i go letting someone get all up in there uneccessarily...because i swear, i never get used to it!
D DogMember
I think butt burn/butt itch come and go. I was having some odd sensations 2 years post takedown. they wanted to do a pouch scope to look around.

Turns out, nothing was wrong, just some odd sensations.

As far as your expectations, you might want to reset them. Reading on this board, you will commonly just see posts from people that are having issues.

Me, I'm 3 years post take down and my BM's average 2-3 a day, with 0 to 2 at night, depending on how much junk food I was eating while watching hockey right before going to bed.

Honestly, I'm loving life with a JPouch!

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