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Hi all! I had pouch creation 12/2014 and had takedown two weeks ago. My ileostomy was so, so amazing. Given how UC stonewalled me in all my efforts, I have a special regard for stomas... for me I felt like my stoma was my friend that had redeemed me from a miserable existence to sheer happiness. Before my first operation, I really wanted to avoid a stoma if possible (... which is why I opted for jpouch) but about 2.5 months before takedown I realized that I would have few issues with being a permanent ostomate. Nonetheless, already having the jpouch and talking with my surgeon, I have to try my pouch and see if I can get the same (or better!) quality of life.


I have had an unusually rough time after takedown. I am experiencing higher frequency, with urgency and slight leakage. I sleep poorly and am fighting anal irritation (although I'm winning that battle). My lifestyle has been affected pretty drastically, in exactly the same ways that UC did (which brings back bad emotions). I told my surgeon that I am going to study abroad for a year next month, and he said this should be fine, but I'm worried now that I'm going to be leaving without feeling well. I had a pouchoscopy last week and my surgeon said that there are no pouch problems and that I'm just having a rough start and that things will get better soon.


Nonetheless, I can't stop thinking about my stoma and that I should have stuck with the safety and stability that it gives. Especially when the gas pains and frequency are bad at night, I start fantasizing about calling my colorectal and telling him I'm coming back to get my barbie-butt. I also fantasize about being in the prep room before the first op and yelling "I want a permanent stoma!" and knowing that I won't get -itis, butt burn, or frequency/urgency/incontinence. I even fantasize about laser treating the hair off my peristomal skin!


How do I defeat these thoughts and give my pouch the chance it deserves?

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I'm sure you don't want to hear this because in your head you already know  BUT two weeks is way too early to know how your new j pouch is really going to behave. Your body need time to heal adjust. The first month (even 2 or 3) is generally rough. But I can tell you it will get better as the weeks go by. That is great though that you embraced your ostomy like you did. I had such a rough time with my ileo.....I never want to deal with one again. Best wishes.....I hope it all calms down for you real soon! 

Last edited by mgmt10

Please stay positive!


Ive had mine for about 5 days and I love it. I'm not liking the frequency and having to think about when to and no to go but it will get better.


Just wondering... Is it usual to feel bloated before having a BM- then go to the loo and have minimal output or sometimes hard to go? I go quite a lot and the output varies but i get uncomfortable after i've had a small meal. Saying that- I have a higher output in the morning... Probably nothing right? lol



I think the main thing is patience!  I too remember going thru all you mentioned.  In time, you learn what works and what doesn't.  I had my total colectomy when I was 17 heading into senior year of high school, had my Jpouch/takedown in spring of my senior year and 4 months later was off to college.  Daunting it was but I knew I needed to do it.  I learned about and adapted to my new jpouch and lifestyle while living with a roommate I had never met, and sharing a community bathroom/shower with a floor full of strangers.


Bottom line is the more you realize your able to do just about anything, the more confident you feel that you've made a good choice.  I remember downing glasses of Metamucil thru the first few months.  Maybe give that a try to help cut down on frequency. 


Nighttime accidents can and do happen.  Usually at a most inconvenient time.  You'll also find ways to help prevent them and even just giving yourself some more time, you'll find that your body will adjust  and learn that your pouch is not "the end of the road" so to speak.


Hang in there and I hope things start to get better and you become more comfortable with your decision. 

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