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Hello All.
Coming up on the day my pouch was born.. Haha.
Been a very blurred year. Went by fast even though at times it seemed to drag by.
I am still working through it and think I always will be. Everyday is different with the Pouch.
But I do believe it will level off and quit acting like a one year old. Had to throw some humor in there... Without it I would never make it.
I do have one question. I know how the Pouch is supposed to work because I have had streaks of days where it worked the way I felt it should but fell back to not working right for long periods.
My question is.... Does it ever get to the point that you would say.... Hey this is it. This is the way it works and will never progress to another stage? I hope I worded it right but I am giving it another year.... To work right without pain... And all the other things we know goes along with it.
My pouch is just ok most of the time. But it did tease me with working properly a few times. It was wonderful when it worked right. That's why I say it teased me.
I will like I said give it another year as I know after having it how serious this surgery is. Very serious.
Thanks All for your support and answers to questions I have had in the past. Kinda glad I didn't find this place until after surgery. I don't think I would have done it reading through posts. Would have scared me off. But I am glad I had it. Because I think in the long run it will work.
Again Thank You.
Richard.
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My whole experience for 20 years was predictable and easy, after my pouch was formed. By four months after takedown, I was commuting to full time nursing school/college and working 20-30 hours a week, too. I never had incontinence after about 6 months, and when I had some, it was mild and only at night, OR sometimes after that if I was really ill (like if I'd had the flu or something, and was sleeping the "sleep of the sick," sometimes stuff would slip out). I never required bowel thickeners or slowers. I ate WHATEVER I wanted. Life was good.

However, NOTHING is the same these days.

It's not so much the "pouch" itself, for me, but other issues surrounding my UC/IBD dx of so many years ago, coming back seemingly to rear its ugly head. Fistula, outlet stricture, inflammation around the cuff from the fistula and new issues, elevated CRP, needing to edit my diet (for both reasons too much fiber sometimes won't GET OUT of the pouch, and some foods do bother me these days)... just, new stuff.

I don't think that there's any sort of "Yes. This is EXACTLY how life with a J pouch is!" answer for you.

There's a lot of folks like I was out there just pretty much living a normal life... and for the *most* part, even now, my life isn't horrid (if I could just get this newer narrowing of the outlet thing under control long term or something - that's the worst at the moment). But I'm no where near where I was even 3 years ago. Three years ago, things were my easy normal... no more.

So even if you get to a "good" place, I no longer believe that it is *always* the shoe-in for continued perfection, for years to come. And believe you me, I thought I had it in the bag!!
Happy Pouch Birthday Richard,
SO, you got a 1yr old...congrats...and I hope that he lives many, many happy and healthy pouch yrs (not sure if it is like dog yrs...but you never know).
I've got a k pouch so the rules of engagement are a bit different...But the fundamentals are still the same.
You just never know...kind of like life.
I have had yrs where I lived off of bread & cheese...now they are poison.
Things that I ate from the begining are now off limits (had 2 chocolate croissants last night...And have been burping like a drunken sailor all day...and I don't burp!)
You might wish to keep a food diary for a few months...writing down what you eat, when, with what (what meds, liquids, other foods etc) and what your stress level or conditons were like when you ate (after a workout, late at night...) and see what patterns emerge...I have done it numerous times and it helps me develop methods of attack for my life and lifestyle.
For now I alternate between fruit days (smoothies) and 'normal days'...my fruit days are when I am at home all day (gota have a WC close by and free) and my normal days are when I eat tiny 2oz protien snacks every 2hrs to keep my energy up for work without having much residue in my pouch so I don't need to use the 'public' washroom with students hanging around.
You will probably find your pouch bliss. Most of us do. It might not be perfection but tollerable comfort. You learn to abnigate certain pains, feelings and symptoms...you just do not notice them any longer or integrate them into your daily routine without thinking about them.
Enjoy your life...
Sharon

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