I am 3 weeks after takedown and having 20-25 toilet moments per day and when I walk my daily 10 minutes round(s) and if I am lucky I make it without accidents.
Doing all the things I am supposed to, Questran, immodium, psyllium and pelvic muscle exercises.
What drives me crazy is not knowing when to expect some improvement. My behind is completely wrecked and burning and 6-10 nightly toilet visits is exhausting.
What should I prepare for, 1 more month? 2, 3, 5?
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Hi,
It is very early for you.
Results vary, but it took me 9 months for my pelvic floor to sufficiently recover to the point where I did not fear accidents.
I have to:
watch what I eat
when I eat
how much I eat
watch the medicines/supplements I take
over the coming months you will discover all of the idiosyncrasies your pouch will throw at you, what works and what does not.
I was very discouraged at the beginning also, but as everyone including the surgeon said give it time (something no one wants to hear)
Hang in there. Better days are ahead!
Your basic healing and physical condition should be very well on its way by about 6 weeks, barring any extra problems, and assuming you push yourself gently but steadily. Getting your pouch to behave is much more variable. Questran never did anything for me, but gradually (and patiently) extending the time between toilet trips worked well for me. Over time the pouch should tolerate increasing volume. I hope you’re applying a barrier cream (plain zinc oxide is fine) after each BM.
Ow yes, barrier cream is a life saver. Specially in dire times of diarrhea.
Definitely months, I did not start exercising until around 6 months after
No one seems to warn you about how long it takes for your new pouch to behave well, plus everyone is so different. Give yourself a year before you know your "new normal".
I recommend doing some indoor execise activities before trying to walk outside for an hour. That way you can pause and use the bathroom as needed. (Otherwise, pick a route with known bathrooms along the path just in case.)
Definitely invest in a bidget. I bought one for about $40 from Menards and it has literally saved my behind from so much but burn! I also use Calmoseptine cream, especially at night in case I leak. It helps calm things down and provides a bearer in case there is leakage.
Don't forget to give yourself grace as your body is still learning to adjust. I remember how rough nights were at the beginning and exhausting. It will get better my friend, but you'll question why you ever thought this pouch thing was a good idea.
Best wishes as you adjust
Just past two years from takedown and feeling "normal" now. Granted, I have chronic pouchitis and after trial and error I found a biologic that works for me. Last scope (April 2023) said there was little to no inflammation in the pouch itself, more so in the cuff which is expected with Crohn's of the pouch.
One thing that really helped me was installing a bidet from Tushy. I sprang for the version with warm water hook ups ($100). Best money I've spent to date and extremely easy to install! Took 30 minutes and hardest part was drilling the hole through the sink vanity to connect to the pipes.
Hang in there, time heals all!
I agree with the comments. It is your own journey to the new normal but stick with us because we lived it & this site is a tremendous help. Be patient because it takes time. Your diet is key right now & the cream & bidet will b your new best friends. God Bless!
Time for some optimism
5 weeks on the clock now and 1 round per day (1200 steps) 50% no accident went up to 4 rounds (6000 steps) 80% no accident.
just doing small walks multiple times a day is great training and helps keeping my sanity 
