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just curious as to what people experience when diagnosed with pouchitis. the first time i had it i was mostly crampy, felt some pressure down there and a continuous sense of urgency. this time around same thing but i also feel pretty run down, have been weak, dizzy and nauseous at times and have an overall sick feeling--is all of this reasonable for pouchitis?...this time the dr. didn't scope me, decided to put me back on cipro and see how things are in a few days...
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Hi, there

I've experienced pouchitis three times in the past four years - everytime, my symptoms always start off the same way. I experience dizzy spells when I lay down and close my eyes. The rest of the symptoms you've described always follow suit.

Weakness

Fatigue

Headache, "light-headedness"

very mild, almost burning sensation in the pouch - almost like a "tingling"

Your antibiotics will take care of it Smiler

Just eat a healthy diet, and above all take Probiotics!

I use VSL#3 and swear by the stuff.

All the best!
I had pancreatitis in the past. I was diagnosed with Chronic Proctitis and it turned out I was allergic to the key ingredient "mesalamine" in all of the meds used to treat the disease. One drug, Lialdal (sp?)had a side effect of the mesalamine building up in the pancreas that effects about 1% of patients taking the drug. Apparently, I was that 1%.

Spent 3 days in the hospital and not allowed to eat or drink anything. Had to be on a liquid diet during Christmas at home. I felt "fine", but my blood tests were off the charts for over a month. After the pancreatitis episode, I could only take prednisone to treat my disease.
My pouchitis symptoms were a little more vague, and in retrospect it was probably brewing for a while before I realized what it was. I was less than a year from my takedown and still getting used to different patterns, so I didn't immediately connect the dots. I did not really have increased frequency (I was maybe going just a couple of times more a day than usual; not enough to tip me off that something was up), but I had slightly more watery stools and a feeling of anal pressure when I needed to go. I generally felt more tired than usual, with intermittent dull ache in the low back/buttocks (not unlike dull menstrual cramps). I also had some light bleeding with BMs and increased butt burn. This progressed over a few weeks to feeling like I was not completely emptying, and it was actually that symptom that tipped me off that I might have pouchitis. I otherwise had none of the urgency, increased frequency or leaking that are more commonly associated with pouchitis. I also had no fever.
Never a fever, but some/all of the following symptoms each time:

increased frequency
urgency
leaking/accidents
fatigue
pain that sometimes increased to feel like gas pains shooting up inside me or, at its worst, like I was having childbirth contractions in there
stool that was watery, yellowish, stinky, almost frothy, and floated in toilet
occasional bleeding, but definitely not every time

I hope you do not experience pouchitis again but, if you do, you will begin to notice your particular symptoms which will help you jump on it earlier.

Cipro worked like a charm for me, but it does have potential for side effects. If you take it, I encourage you to take saccharomyces boulardi.

Good luck!
my apparent pouchitis symptoms : greater frequency (12-15 daily vs 5-7) also depending on how often I eat - no cramping or fever - fatiqued some I assume due to dehydration - cipro always stops it but then it slowly returns so end up using cipro about every 3-4 months / had colectomy w/ j pouch 11 years ago / am 62, 6-0 / 190 and play baseball (not softball) every Monday night in the summer (quitting as soon as I hit one out like Ted did)
It is inflammation of the pouch, by any cause. This does not include theminor inflammation that ALL pouches show, but that which is clinically significant and/or symptomatic.

It can be caused by bacterial overgrowth, IBD (UC or Crohn's), infection (bacterial, viral, or fungal), or irritants (like food intolerances, pH levels that are way off, fecal stasis from poor emptying,etc.).

It is the most common complication of the j-pouch (or any ileal pouch), and most of us will encounter it at some point.

Jan Smiler
I currently feel like all the energy has been sucked out of my body. In addition to all of the symptoms listed above I also do not feel like eating. I think it's because I know when the food hits my system things get worst. I do eat food based on nutrition and softer foods that are easier to digest like Greek yogurt and to bulk up like bagels.

I take Augmentin as Cipro promotes c.diff in my case and Flagyl makes me feel worse. I also take vsl#3 and s.boulardii timed 4 hours inbetween Augmentin doses.

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