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Hello all

It's been about 5 weeks since my take down, and i'm if things i'm experiencing are normal at this stage. I Think most are, but i'll ask anyways

Theres a few things bothering me, first of all tiredness which I Think is quite normal as of now. What concerns me more, is that only a few times a day, the stool somewhat formed. I have about 6-10 bm's a day and apart from the few times i mentioned, the stool is very thin and sometimes kind of watery. I'm up about 2 times a Night, wakeing up, and can't fall asleep until I go to the bathroom, the strange thing is, both times I go at night almost nothing comes out, not even that much gas either. Are these things normal? I'm thinking it might be pouchitis?

Also, all these BM's have caused some horrible butt pain. I've only had the "burn" 3 times but lately a wound and a light burn has been really tough to deal with.

I hope it didn't get too long!

Late merry Christmas

Nicolajs 

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I’m about two months post takedown and my consistency is similar. You may want to try and eat more fiber to bulk up the stool? Not too sure about the getting up in the middle of the night to go and then not passing anything. I haven’t had pouchitis so I don’t know. I can only help with the first part of the question. 

I think pouchitis includes leakage, straining, fever (sometimes), blood etc

B

Formed stools aren’t really normal with a J-pouch, though some folks do get them. Watery is no fun either - you might try psyllium or another soluble fiber. That’s helped me for 15 years. As far as the sore butt, you should be using a barrier cream after each BM. Zinc oxide is simplest, and some people prefer Calmoseptine (which I always found a bit too “refreshing”).

Drink enough water, try to eat properly, and be patient with yourself. This is a big adjustment!

Scott F

Thank you Scott. I have been using a barrier cream but sadly that wasn't enough will try zink oxide, lots of water and psyllium. 

How about the trips at night, have some of you experienced the same as me, with the need to go, and then when going almost nothing comes out? I hope that'll get better over time though it seems psychological to me at this stage. 

N
Last edited by Nicolajs

Hey Nicholas,

i recently had a takedown for the second time and I’m experiencing the same urge. I find that i will also sometimes have a short window where i can go and then if i don’t get to the toilet within that 15 seconds then i cannot go anymore, even if i feel the urge too. I can assure you that this will get better with time. In the meantime i would try to be cautious about how often and how hard you push when you do attempt to go to the bathroom. If you try and you realize you won’t be able to go then maybe soak in the bathtub for five minutes. It helps me get my mind off things and relax the area. I also make sure to pay the area dry very carefully with toilet paper or a towel and then i use “Ilex skin paste”. You only need a little bit and it’s less “refreshing” than calmoseptine so i prefer it. You can get it on amazon for like $20 but it lasts a long time. 

In order to attempt to minimize hownoften you feel you need to go you can try to avoid getting too much air buildup. I find that laying down and shifting a lot will make me have to go to the bathroom more so i try to pick a side to lay on and stick with it. If you haven’t elteady, you should also figure out which baby wipes you prefer the most and use those instead of toilet paper to get things fully cleaned. Usually the non fragrance, non alcohol, non-flushable sensitive skin wipes are the best and I’d carry some of those in a plastic baggy everywhere you go. 

J moons

I agree about the wipes and taking the medication with you. I have a little purse thing I bring to the bathroom during work. I also have a small tube of cream that i keep in that bag for travel too. 

When I was in the hospital last time my butt got really sore and they gave me a Ruben of Coloplast barrier cream/ointment and it’s the best. I just ordered a bigger container of it. I also use really soft toilet paper at home bc I have a bidet I purchased for $30 on Amazon. It sounds made a word of difference. 

As for feeling like you’ve got to go- could it be gas? I take a gas ex after dinner so it doesn’t bother me at night. Just a thought.

B

Thanks for the inputs bubba and j moons. It’s definantly gas sometimes, especially at night. When i go at night though, I don’t think that the amount of gas comming out is vert much. Maybe thats just because the pouch can’t hold that much gas? 

Also I have not done too much exercise, like walking and so on. (Was told not to run and such for at least two months). The reason i’m not walking so much is I feel pressure when standing up, and the only way to get rid of that is to go to the bathroom. But i’ve started to wonder, if walking would help on this issue maybe?

 

N

Part of the adjustment is figuring out which sensations need to be attended to, and which can be ignored. Maybe that pressure can be ignored, at least for a while. Ignoring the pressure a bit is sometimes called “stretching the pouch.”

When you go to the bathroom and not much comes out it’s important to distinguish between a nearly empty pouch that feels full, vs. a full pouch that can’t be emptied. If you end up seeing your doctor about this you’ll get better care if you can successfully report which of these is going on.

You really, really should be walking, if at all possible.

Scott F

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