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Hi everyone!
  A little background info I am 28 yrs old diagnosed with UC almost 4 years ago. Went through all the meds with little luck for them working long term and was allergic to Remicade. In March 2012 I had my colon removed and a loop end ileostomy created. The surgery went fine recovery was long I was readmitted 2x for and abcess in my abdomen that made me very ill but once it all cleared up I have been doing great. The worst part of the bag to me is dealing with dressing around it in the summer time with all the thin fabrics but the winter will cover it up fine as I live North and it gets cold. But dealing with it day to day is fine it doesnt bother me like I thought it would.

My concerns now are all the horror stories I read about after the final J-Pouch surgery. I have to have 3 steps as my tissue was too unhealty to create the pouch during the first . All I ever hear are the bad things that happen so I am reaching out to everyone for their experience good and bad. I have thought about just staying with the bag since Im healthy and it doesnt bother me. So here are a few concerns

Do you have accidents? How often?
Do you have diet restrictions or foods that affect you?
How long have you had your pouch and what problems have you had?

Thanks for any feedback!

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Reply posted for mckinndn.

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Reply posted for mckinndn.

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 Reply posted for L1623.

I could have written L1623's post myself.  I am only 3 months post takedown but I feel great now.  The first month was bad.  Each week I seen the dr. I was in tears because I felt worse than I did when I had the bag.  I was dealing with nighttime accidents and found myself in the bathroom over 25+ times during the day.  Gas was a huge problem for me until I figured out the trick to lay on my stomach.  Then one day about 5 weeks post takedown someone asked me how I was feeling and I actually could truthfully say "I feel great".  Since then it just keeps getting better.  I definitely must know where a restroom is when I eat due to the need to go soon after eating but it's manageable.  I also started working out again 3 weeks ago and it feels great.  Just now it gets better after surgery.  Give it time.  My doctor told me I wouldn't be at my new normal until 12 months post surgery and I believe it because even now things keep changing.  Thankfully for the better.

 Reply posted for mckinndn.

hi mckinndn
i’m going to play off of l1623’s comments.  i’ve got the j pouch and had my final reversal this past march (2012).  i fought the constancy problem for a few months, i won’t lie.  i might have "lost it" once a week during the day and maybe twice a week at night.  it was harder once i began eating again, because now you have to pass that gas, and you're body isn't ready to tell the difference yet.  (i've discovered now that lying on my stomach for a brief second allows the gas to "rise" in my pouch and separate itself from "that which needs to stay put")

it almost seemed like a step backward from where i was.  i had to sleep in depends, and generally was nervous about keeping control.  like l1623 said, i think it actually became more mental.

but then, one day, *** & *** ip;..it just got better.  i gained more muscle tone in that area, and week by week i got better.  2 months out from surgery i was sleeping through the night.  i mix and drink metamucil after each meal and that allowed formed (but soft) stools again.  today i’m eating most anything i wish (though consequences do follow from spicy foods), but you learn what works and what doesn’t.  i’ve got my strength back and am training for the ccfa half marathon in vegas this december.
 
its funny& *** ip;.i hated the bag.  but before my reversal& *** ip;.i sort of didn’t mind it anymore.  i understand where you’re coming from.  i had a painful complication as well and felt over the whole medical thing. but if you give it 6 more months, you can kick this uc thing forever though.  my pouch is working - bottom line.  best-

My daughter had just turned 8 when she was diagnosed with UC. Within 7 months we had gone through all the meds, and things had 
never fully calmed down since she first saw blood that Nov day in 2010. In May of 2011 at the age of 8 she had her collectomy. In Aug 2011, she had
her J-pouch formed, and in Dec 2012, we received the best Christmas gift 3 days after Christmas and that was her reversal. 
I or should I say "WE" could not have asked for a better Christmas gift. 
She is doing wonderful, and has not had any problem with her reversal. She is a vibrant 9 yr old now. We plays and goes to school. Unless you knew her, and her story, you would not know by looking at her all she went through.

At night she still wears a pull up, because she does not have control YET at night when she sleeps. During the day she is fine. Little things we found 
useful is If we go out to eat, we either ask for a seat close to the bathroom, knowing that in the hour we are there, we might need to use it. another thing is
always know where the bathrooms are in case you need to go. After the surgery, you will find until your body adjust from the surgery, you go a lot. At times you 
will get what some Dr's all TACOBUTT... It's a funny way of saying because you go so much, and your body is adjusting it can get sore from going often to the bathroom. There are some very good cream to use, however, you can always use Vaseline to protect your bottom. 

One thing to remember is everybody's body is different. Some will have horror stories, others will be not. I hope and pray that all goes well with your reversal. I wish you
the best. 

 Reply posted for mckinndn.

My son was 11 when he was diagnosed. We tried every medicine just about for Crohn's and UC before the total colectomy. My son's first sugery was in April 2011 and the last of the 3 step operation was in September 2011. Everything has been great since then until today (Aug. 24, 2012). He ate what he wanted after the colectomy, reconstruction and takedown. He only has to go to the restroom 8-9 times a day which is really good considering that the doctors were expecting a much higher number right out of surgery but it's been that way since the last surgery. He has really good control of his J-pouch and rectum. When it was time for the last surgery he protested-not wanting to give up the pouch but he is a much happier boy now. He feels just like every other 14 year old boy and doesn't have to worry about somebody noticing the pouch or making fun of him because of it. We've had nothing but good experiences with the reversal and I hope you have great success with yours.

I pray every day that there is a cure for these particular auto immune diseases. It breaks my heart that an adult much less a child has to go through all of this but on the bright side this is nothing compared to those who have it worse. I have to tell myself that on a daily basis to get through this sometimes. I pray that all goes well with you and that you have nothing but great fortune in the coming months and years of your life.

God Bless

 Reply posted for mckinndn.

hi!  i'm a 30 yr old female and i just had my reversal in march!  my first surgery was in december 2011.  i won't lie. the first 4-6 weeks post reversal were pretty much *** . i didn't leave my house very much but at the time you are still recovering so time does go bye fairly fast. i was very cautious as to what i would eat( stuck to starches and more solid foods that were gentle on my system).  try and get as much rest as you can because i would notice that every time i would get into bed to lay down my body would say " oh no you're not" and i would have the constant urge to use the restroom. this was more mental than physical. try and hold it as long as physically possible. that is probably the best advice i was given. believe me it is hard. i will not sugar coat it. i had many sleepless night where i would cry and just ask "why me".  i promise you this will all go away. learn to focus on the good minutes in the beginning and as the days pass take note of the good day/s. as the weeks go bye you will have more better than bad and next thing you know you will wake up and feel normal. it may sound crazy but my worst day was easter of this year. it was 2 days before my 4 week marker and it was the worst day i have ever had in the 15 years of being sick. i wanted to give up and go back to the bag. i thought to myself  " how cam i live this way. is it ever going to change or get better ". i woke up that next morning and without exaggeration i felt like a new person !!  i have been completely good since that day. no accidents, problems, pain... nothing!!  i am now  close to 5 months post op and for the last month and a half i have been back in the gym training for the nyc marathon!  i am back to my normal daily routine and i feel great. all my energy is back and better than ever.my thought and prayers are with you for a speedy recovery!! 

I had my final surgery about 26 years ago.  I was 12,  I will  admit i had no input on whether i wanted to have the surgeries or not.  I was diagnosed when i was 9.  I was just so happy to get it all over with ( wearing an iliostomy during 6th grade was a nightmare!). I have had very few problems since then, I do have to be careful what i eat. I love watermelon but you have got to be near the restroom when you eat it. When I was diagnosed the only medications being used were Prednisone, and Sulfasalazine.  They did nothing for me.  I finished school, went to college and am currently married with 3 kids. I hope this helps