Hey everyone
I just got my j pouch about 3 weeks ago and learning so much about foods and moving around. I know it might be still very early but I notice that when I move around I constantly feel like I have to go and most of the time I do but if I lie down I'm ok.
I'm wondering if anyone else had this?
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Keep in mind that the usual suspect for going too much right after takedown is excessive motility/spasmodic pouch post surgically, which is a very common situation. You have noticed a connection with moving around but moving around generally stimulates motility, and if it's already excessive, you will be way above the baseline when you move around. The easiest way to figure out for sure if this is the issue is if the BMs come in rapid fire bursts after eating meals. If so, take an anti-spasmodic like bentyl or levsin 45 minutes before meals.
Excess motility generally calms down as you get further out from surgery. Surgery throws your motility out of whack but it will eventually stabilize.
@CTBarrister posted:Keep in mind that the usual suspect for going too much right after takedown is excessive motility/spasmodic pouch post surgically, which is a very common situation. You have noticed a connection with moving around but moving around generally stimulates motility, and if it's already excessive, you will be way above the baseline when you move around. The easiest way to figure out for sure if this is the issue is if the BMs come in rapid fire bursts after eating meals. If so, take an anti-spasmodic like bentyl or levsin 45 minutes before meals.
Excess motility generally calms down as you get further out from surgery. Surgery throws your motility out of whack but it will eventually stabilize.
Thank you for the info and the tip about the meds it absolutely makes sense!
First of all, congratulations!!!!!!!!! Welcome to the fam 
Everything is normal babe! Just about all of us had that!
I continue to have that even almost 7 years later
@Former Member posted:First of all, congratulations!!!!!!!!! Welcome to the fam
Everything is normal babe! Just about all of us had that!
I continue to have that even almost 7 years later
Thank you!
U continue to have that feeling 7 years later? How do you manage it?
@igotanewlife posted:Thank you!
U continue to have that feeling 7 years later? How do you manage it?
9% of the J-pouch community goes 14bms or more each day, I am in the 9% community, I go close to 20X a day.
How I manage? I Excellent question! I manage by "accepting the things I cannot change", instead of being sad about it, I work with it. I have to plan ahead, make sure I am constantly hydrated stuff like that. I barely get sleep but I am just grateful my UC is controlled and that I can use the bathroom without problems. You will get use to things and you will be awesome at it
Make sure you get naps whenever you can though. Wipes Wipes Wipes Wipes! Those are my lifesaver! A lot of people here use bidets but I like wipes because I am cheap lol.
@Former Member posted:9% of the J-pouch community goes 14bms or more each day, I am in the 9% community, I go close to 20X a day.
How I manage? I Excellent question! I manage by "accepting the things I cannot change", instead of being sad about it, I work with it. I have to plan ahead, make sure I am constantly hydrated stuff like that. I barely get sleep but I am just grateful my UC is controlled and that I can use the bathroom without problems. You will get use to things and you will be awesome at it
Make sure you get naps whenever you can though. Wipes Wipes Wipes Wipes! Those are my lifesaver! A lot of people here use bidets but I like wipes because I am cheap lol.
That's a great outlook on things. I really hated "the bag" so I'm willing to do anything to make this work!
What do you do with the infamous Itch since you are going so many times a day?
@igotanewlife posted:That's a great outlook on things. I really hated "the bag" so I'm willing to do anything to make this work!
What do you do with the infamous Itch since you are going so many times a day?
Thanks honey I totally understand! I hated the bag too because I was having soo many blockages due to being muscular. I hope everything works out for your pouch. You can ask me anything at anytime or message me anytime, I always answer so feel free
You ask excellent questions!!! Good job With the itch situation: whenever I get into the shower, I put Ajax dish soap on my fingers and rub all over the place on my butthole lol. Get it all in there and all around there, I rub for a while and then rinse. After I do that, I never get the butt itch lol. Dish soap is pretty strong And in addition to that, I usually use wipes after BMS , make sure you clean it really good
@Former Member posted:Thanks honey
You ask excellent questions!!! Good job
Thank you so much for the info and sharing your experience 9
Hi igotanewlife. It's all been said above but I just want to toss in a bit of encouragement as well. I remember wondering if I'd be able to take a walk comfortably. I had to constantly stop and clamp shut in pain. I wondered if I had made the right decision to have the surgery. I don't remember when the worst of it passed but I do remember a qualitative leaps of improvement over the first few months. Hang in there and trust it'll feel way more normal in time.
@JHendrix posted:Hi igotanewlife. It's all been said above but I just want to toss in a bit of encouragement as well. I remember wondering if I'd be able to take a walk comfortably. I had to constantly stop and clamp shut in pain. I wondered if I had made the right decision to have the surgery. I don't remember when the worst of it passed but I do remember a qualitative leaps of improvement over the first few months. Hang in there and trust it'll feel way more normal in time.
Thank you so much for the encouraging words it's great to have something to look forward to!
@igotanewlife posted:Thank you so much for the info and sharing your experience 9
You are welcome, ask me anything and I will answer, good luck
