Living with a J pouch

I'm a new j-poucher here too! I started on this forum and after having my colon burst i went to the ostomy board where everyone was so wonderful. I honestly don't know what i would have done without everyone over there and all their help. I'm 7 months out from my surgery and honestly I don't even think about the fact that i don't have a colon anymore. I go to the bathroom about 6 times a day. i stopped waking up at night after just 4 months, but i do have night time leaking (a tiny bit of mucus) 5 out of 7 nights. I have to wear a pad to bed, but i think that's so much better than simply crapping yourself in sleep like i used to when i was in a flare. Plus my surgeon assures me that until i hit one year, i can still hope for it to go away and it used to be every night, so i have high hopes.

I can't really pass gas without going to the bathroom most of the time. Sometimes its fine if i'm in the right position, lying down or sitting at an angle. but mostly, if im feeling really gassy (like when i eat broccoli) i just go to the bathroom. And drinking alcohol differently increases trips. I'm totally a noisy pooper now and suffer from shy colon so i can't go if i know someone can hear me. darn self-consciousness!

I only have one food i can't eat. Leafy greens. i couldn't tolerate them before surgery either and salads are over rated :)

I feel better than i can remember and aside from my scar (which is rather large since i had emergency surgery) don't feel abnormal at all. granted I haven't started dating since my surgery so that will be interesting to figure out how to tell potential dates about my surgery and reactions to the scars, but i figure if a guy isn't ok with that then he isn't good enough for me anyway.

you boys out there, I am a lady, but my surgeon did point out to me that the main thing for men to be concerned with is the preservation of your sphincter muscles. A good surgeon will be able to do this. this is what prevents incontinence, and allows men to still get erections. You'll want to do your research on the best of the best. Cleveland clinic is of course great, and I would recommend my Cincinnati Surgeon Janice Rafferty. She's one of the best in the country as well. Preservation of those muscles is key to the J-pouch being a good option so all the well known surgeons should be safe choices.

The surgery is a long process and can be trying while you get used to the temp ostomy. But honestly even that was better than how awful i felt with UC. I wish i had had the courage to elect surgery 4 years ago when everyone told me there was no chance for me to avoid it. I would get all that time back. It's scary, but there are so many people out there that have gone through and survived and are happy with their decision. like my sig says, I love my Jpouch!

betsaronie said...
, but i do have night time leaking (a tiny bit of mucus) 5 out of 7 nights. I have to wear a pad to bed, but i think that's so much better than simply crapping yourself in sleep like i used to when i was in a flare. Plus my surgeon assures me that until i hit one year, i can still hope for it to go away and it used to be every night, so i have high hopes.

 

Why do you have leaking mucus when you sleep? What is the different between the sleeping time or regular time. Why do you leak, does the surgeon know the answer to that?

By the way 53rd&3rd, your tone sounds very familiar.

That was my feeling as well pre-surgery. But with a pouch it is different. There is no pain, no urgency, it just comes out, like peeing. After a while you don't even think about, I mean do you think about peeing. I'm in and out of a bathroom in no time. And yes, while I do have to use the bathroom in the middle of the night-well I say the ones who complain have never had children, or are old-lol-in fact my old husband with his enlarge prostrate gets up to use the bathroom more than me.
BTW, Even with all my issues I am very healthy now, eat whatever, whenever especially chocolate-lol, I'm a gym rat, love the malls, vacations, etc etc this pouch does not stop me but UC did.

The only other thing I would like to add is if you are thinking about going this route then try and do it while you are still somewhat healthy ( hard to make this choice when you are doing ok ), find a surgeon that you feel comfortable with and experienced and a really good GI to work with you after to keep your pouch up and running.

susans53 said...
That was my feeling as well pre-surgery. But with a pouch it is different. There is no pain, no urgency, it just comes out, like peeing. After a while you don't even think about, I mean do you think about peeing. I'm in and out of a bathroom in no time. And yes, while I do have to use the bathroom in the middle of the night-well I say the ones who complain have never had children, or are old-lol-in fact my old husband with his enlarge prostrate gets up to use the bathroom more than me.
BTW, Even with all my issues I am very healthy now, eat whatever, whenever especially chocolate-lol, I'm a gym rat, love the malls, vacations, etc etc this pouch does not stop me but UC did.
The only other thing I would like to add is if you are thinking about going this route then try and do it while you are still somewhat healthy ( hard to make this choice when you are doing ok ), find a surgeon that you feel comfortable with and experienced and a really good GI to work with you after to keep your pouch up and running.

This isn't how you used to talk about your j-pouch. Your j-pouch sounded like a nightmare, no offense. And in fact you had to go back to a temporary ostomy (which you still have right now) it was so bad. I'm pretty sure I haven't confused posters either.

Post Edited (NiceCupOfTea) : 11/30/2015 4:02:53 AM (GMT-7)

I know you hate your ileostomy, which is fair enough, and I hope you have better luck with your second takedown. But rewriting history to make it seem like the j-pouch was hunky-dory for you isn't fair enough: it's misleading.

NiceCupOfTea said...
I know you hate your ileostomy, which is fair enough, and I hope you have better luck with your second takedown. But rewriting history to make it seem like the j-pouch was hunky-dory for you isn't fair enough: it's misleading.

this is an old thread from 2012. How is she being misleading?

Susan, good luck with your takedown....hope this does the trick for you.

It's ok and thank you.

Post Edited (susans53) : 11/30/2015 2:11:28 PM (GMT-7)