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I have had ulcerative colitis since I was 15. I was on every medicine you could imagine. In October 2008 I had my large intestines removed and was placed with a iliostomy. I was doing well with my iliostomy but I really wanted to have the reversal surgery. So in May 2010 I went through the two surgerys that is required. I had a hard time during the three months I had to wait between surgerys. My second surgery was August 2010.  I had a problem with my jpouch closing up so I had another surgery in April  2012. My doctor told me I would have 3-4 bowel movements a day. That has never happened  I go 10-12 times a day. I have a lot of pain. I have accidents every night. My dr. Has suggested that I have surgery again and have another iliostomy placed permanently. I am thinking hard about this would like to hear from anyone that may have a suggestion for me to help me make this decision.

 Reply posted for lenoralouise.

....continued....The plus side is you will not have constipation ever. You will rarely have gas pain, unless you are just holding it in on purpose. You will find that you don't get stomach virus's very often and if you do you will not cramp. Also since you don't fully digest fats you should probably stay slimmer (or slimmer than you would have been). I think all this makes you more aware of your body and over time you can feel what your body needs and you might actually be healthier than some because you have been taking care of yourself. To sum it up, the leaking, being worn out from frequent trips to the restroom, dehydration, soreness during sex (for females anyway), that all goes away...the only thing that stayed was the gas,and restroom time(but you can hold it now if you want or need to).

 Reply posted for lenoralouise.

I have just found this site after looking for a friend from work and I had to respond to you. I will try to make it short and I will try to remember, I had my large intestine removed to my illium and most of my rectum in 1989. I had the J pouch I guess. I never knew the name. I was pregnant at 19 and had to have emergency surgery. I wore an illiostomy for a year so the baby could be born and I could heal and then they had a surgery where they looped part of my small intestine into a pouch, I also had a blockage after surgery, they said it was where the staples caught to the other side of the intestine (they kind of just ripped them free right there) I also had leaks, you have to do tightening exercises. I used to just count and do 10 every so often. I had dehydrating issues. It steadily gets better, I am 44 now. I haven't leaked in years, probably since my 20's. I still go to the bathroom alot, but I have gotten used to it. It just seems normal now. I believe your large intestine plays a major role in absorbing calcium, potassium,magnesium (all the -ium's) , water, and gas. So you will need extra of those and you will always have lots of gas. I tend to have to lay down to get it out, due to lack of rectal muscle power, try to get it out at home of course (Not getting all that gas out, I believe can aggravate the leak problem) . I did notice that red food coloring caused leaking somehow, as did watermelon, large amounts of alcohol, lack of sleep, oh and you may want to chew whole kernel corn real good. Food comes out different colors (meat can be black, grape juice green and I still haven't found the source of the weird florescent green) and conditions, undigested fat comes out foamy.

 Reply posted for lp1957.

I just signed on and this is my first message bare with me I will try to answer the best I can.  I know how you feel, I also had surgery in 2012 to remove my large intestine due to my UC.  I had a bag until everything healed and the reversal was done six months later.  Developed lots of complications, but to tell you what I know.  Healing takes a long time and the small intestine has to learn to the work the large intestine had to do.  The bathroom visits are always more then 3 or 4 times.  Watch what you eat and probiotics helps with putting back the good bacteria which helps with gas!  Leakage is common so always wear pads.  Do the tightening exercise of the rectum muscle it helped a little but sometimes you think your passing gas and oops something else comes out.  I don't know what kind of pain your in but my surgery still hurts .  Obstructions are common after surgery I don't know if that was the same as you jpouch problem.  As far as going back to a bag permanently I would see another surgeon for a second opinion.  Also if you see a nutritionist they can help with the diet and which probiotics are good. I use florestor or culturel.  I hope you see this and hope it was somewhat helpful.  Hang in there :] 

 Reply posted for kasey6687.

I'm so sorry to hear you are having trouble.  I know the words get to sound empty after a while but hopefully it's a little helpful.  I also had a lot of problems after my reversal surgery.  I had my colectomy done for what we thought was UC when I was 19 and then had the reversal about eight months later.  I had complications with the first surgery but that is a bit unrelated.  My best advice for dealing with leakage is never go unprotected.  For years I wore the "Goodnite" diapers to bed.  It was upsetting to be doing that but it was so much better than having to change my sheets in the middle of the night every night.  Now I am much better off with leakage but it has taken me ten years.  We also figured out I have Crohn's so the surgery didn't cure everything and I've had fistula surgeries that made me leak again.  Also wear panty liners or thicker pads if you need to during the day in your underwear.  It's embarassing.  I know.  I am a dancer and you can always tell, but it's better than leaking and having to change.  As far as getting more surgeries, if your surgeon isn't fixing you the way you think you should be fixed, look into other options.  I have a surgeon here in Philadelphia who's father literally invented the procedure and he is top of the line.  Ostomys are hard.  I'm sure you know that by now.  If there is a way to fix the pouch that would be your best choice for a more "normal" life.  I know I have little to offer other than my own experience but I hope it helps a little even if it is to know you aren't the only one out there.