HI,
I'm new at this, well the j pouch bit, I've had UC for 13 years.
Pred- only "good" at high doses, messes with other cond
EndoCort- " "
Immuran- pancreatitis
Flagyl- no change
Remicade- anaphylaxis, lost efficacy
Asacol- lost efficacy

In the last 13 yrs I have had two 6-9 month periods when I haven't had a bleeding gut. It's taken me those 13 yrs to admit to myself that my colon and I are not friends, that, and to quit changing doctors every time some one said surgery.
Now my colon has been voted off the island and I'm asking what is probably the most repeated question on this site- pouch or bag?
Everyone says I'm too young to have a permanent ileostomy and that I must try the pouch, after all it works for alot of people. That sentence is always followed by BUT........
I feel like if I'm going to finally give up my truly uncooperative, spiteful colon than I want life to be a damn sight better than it is now. A.K.A- not having to know where every decent bathroom in a 50 mile radius is. But there are all the ifs, and buts with both procedures. All I can say is "AARGGH".
Ok, this message was my first big step in accepting this whole business.
Thank you to all you brave souls out there who have put yourselves out there for the rest of us.
L.S.
Oh yah, I have to decide by June 13. The big day. Friday the freak'n 13th!

I'm new to this site as well, and people have really been helpful. I've only had UC for about 3 1/2 years, with bad flares only in the last 1 1/2 years or so, I loose track, because it just never is normal anymore. Anyways, my husband had the j-pouch procedure done and he swears it was the best thing he ever did. He had a hard time adjusting to the whole ostomy thing - it was temporary for 3 months. It was a combination of things: 1. Being young and athletic - worrying about the bag flopping around, leaking, smell with sports and stuff. The gas would puff up the bag and he'd have to go let it out somewhere. 2. Body image - he was very self-conscious at first. He didn't even want me to look at it, but after a month or so, it just became part of the routine. Anyways, he never had the intention of keeping it, so I don't think we ever had the discussion, but he does say that even with all the annoyances, the bag was better than living with UC. Now, as far as the j-pouch, you read a lot about having to go to the bathroom quite often still, which is true - he averages about 4 -8 times a day I guess... but we just had the discussion this morning, that he could care less HOW MANY times he has to go a day, as long as he didn't have urgency and that fear of losing control - which he says he totally has. He still thinks about washroom locations when we go on long trips and such, like a long night out, but he doesn't obsess over it, and by no means is running to one. The only time he feels slight urgency is when he has pouchitis, and I'd say he's had that about 4-5 times since the surgery in 2003. So he thinks it was the best choice for him. He doesn't even feel any different than the average jo. Hope this helps. He eats and drinks what he wants for the most part, and is only occasionally on cipro or flagyl for pouchitis. Even popcorn!
Oh as far as the ostomy, he didn't have any trouble with skin breakdown and such. He just kept really clean, he was kind of a finatic about it.

If you are a candidate for the jpouch I think it's defiantly worth trying first. I cried in my surgeon's office when she was going over the potential adverse affects with the jpouch, mainly the incontinence issue. I almost decided against it and the minute I woke up with the ostomy I immediately was glad I was going to try the pouch a few months down the road. I didn't know what to expect, I guess. I eventually got used to it but was looking forward to reversal.

I've been fortunate to have a pretty well behaved pouch and not to have any incontinence issues so far (I'm about nine months post reversal). Having control over your bathroom breaks is so worth it without wearing the bag if it works out for you. There's my two cents... best of luck to you!

I went for the J-pouch as well and I am so glad that I did. I had a temporary ileostomy for a year and I had to empty it quite often - more often than I use the washroom now. I was way too self conscious (I was an 17/18 year old girl at the time) to swim and had to really make sure that I did not eat any food that created gas as it tends to make noise. I was always worried that people would hear my "stomach fart."
With the J-pouch I look just like the average person on the outside (except for my scars, but depending on where you get your surgery done, you can get the majority of the surgery done laproscopically and scars are much smaller) and I have no pain at all. With the J-pouch you have very little/no urgency after a couple weeks of recovery. The younger you are, the better off this surgery will work. I suggest going through with the j-pouch. You can always have it reversed (to an ileostomy) if it does not work out. Either way, the pouch and the ostomy are SO much better than colitis. No pain, control, it is just so much better!

I just wanted to echo the sentiments already expressed. I am very glad I went with the pouch. Simply having to empty the j-pouch every time I urinate isn’t a big issue vs. dealing with the time consuming bag. After about a month my pouch was working well, and hasn’t given me any issues. I am very careful diet wise, but I can eat most of the foods I like. I am getting ready to head to a NASCAR race this weekend, and I am not worried that I will have to go the whole time. I can sit through movies; play 18 holes, etc. w/o going. In fact I have been to the theater more this month, than the entire 2 years I had UC. Yes there are risks with the pouch surgery, but the risk vs. reward to me is a no brainer. Plus, if your pouch should fail the end-ostomy is not that bad to take care of, just requires supplies and planning to change it every 4, or 5 days.

Go for the pouch. It is not perfect, but makes life worth living again. I am very happy, and young too, and glad I did it.

Thank you all so much.
I couldn't look at the site again for about a day after posting. I don't know why this freaks me out so bad. It's not like I should feel that attached to a colon that has been so bad to me, but hey, I've known the thing all my life.
Thank you for sharing you're experiences. Like so many people the term "support group" has always sounded alittle "ugh" to me. But it's amazing to find out you're not alone.
L.S.

L.S.,

My pouch is working out for me and it has been about 6 months. I say try the jpouch because it has a good success rate, and if it works then you'll be functioning and not have the bag. If the bag is the only option, it is a great option, so much better than being sick, but the pouch for me is a bit easier than maitaining the bag.

my photo story is below if you want to check out the process that i went through.

The jpouch has a high success rate and is considered the first choice for surgical options. It's not perfect but neither are the other options. If you opt for a jpouch and you aren't happy you can revert to a permanent ostomy. But if you have a permanent ostomy you can never try the jpouch. I think it really comes down to you deciding what surgery solution is best for your lifestyle. I had my jpouch surgery 7 years ago and have never regretted it despite some difficult times early on.

Sue