Decisions....decisions

You have to take out the colon anyway heh, it's harming your system and if you'd keep an ileostomy you don't have to have an inflammation from an organ you're not using! Apart this, I strongly advise you to take pouch.

I had your same doubts, regarding pouch and pouchitis, above all because I had no life for 12 years of colitis, and feared the same. Now I have somewhat chronic pouchitis, but can keep it in check using just antibiotics, and is absolutely not the same thing as UC. I can live fully although pouchitis (no urgency and 4-6 bouts at restroom are perfectly manageable, there are days I go 1 in the morning, 1 in the evening and 1 before bedroom!

I hope that I will never have an ileostomy again, although I had a great time with it, so I'm not deliberately contrary (for sure, it's my salvation anchor if the pouch should stop to work), but I advise, before, to try the pouch, you can always come back to ileo if doesn't work. If it works you can have a great time with it!

In summary don't be afraid of what you read about stories of pouchitis, i somewhat think that all the pouchers have sometimes face it, and it more or less completely manageable.

Get the pouch.

Oh, I'm the negative Nanct of the group.  I'm the mom, not the patient.  My son would say get the pouch.  I say leave the bag. And my reasons for that are such.  He had his colenectomy in June of 2014, had his takedown Sept 2014.  That's when the fun began.  He had horrible pain, and butt burn.  He started out at 300 pounds. Had lost 30 before the first surgery, another 30 over the summer just from having the ostomy. after the second surgery, because he was in so much pain kept losing weight.  I don't remember exactly how much in Nov. he was in so much pain. And the surgeon kept saying things were fine from his perspective we went back to Gastro.  Did a bunch of tests and found he had a sizable abscess and a micro tear in his pouch.  In the hospital immediately.  Put in a drain to drain the abscess.  Two weeks later they found the fistulia.  Back in hospital.  Put on TPN, intravenous feeding for 8-9 weeks.  That did not clear up the fistulia.  So in March they did a diversion.  Continued to lose weight after the diversion.  In total lost 120 pounds.  he now is feeling so much better, so much so he has gained 40 lbs, (which I am not happy about).  I wish he would keep the ostomy, but he is bound and determined to get rid of it.  He just got out of the hospital today because of the micro tear, which they just found Friday, and another abscess.  So we are still in this battle.  I would prefer to leave well enough alone, but it is. It is not my decision to make.  There are good and bad with each choice.  I think it's a very individual one.  We just happened to get some really horrible complications.  Good luck with your decision. It's not an easy one.  Either way, this group will be here for you!

 

I had my surgery close to two years ago.
My UC was just localized close to the end of my colon and no where else.
They... My GI.... Said a pouch wouldn't work because it was so close to the end of my colon that there would be nothing to attach to... But there is... Apparently....  so I sat on it for years before I decided to go for it.
Of course I went through all the things you go through... Pain... Meds... Soiling.... All of it for years.
So... Long story short one surgeon said the Pouch  would work.  So I decided to do that before I went straight to the illeo.  What the heck huh?  Might as well try it.
Well..... In my case so far it's no better so I see an illeo in my future.  Some people it works.... For some it won't.  I personally had to try it and  have no regrets in trying it.
My experience.  No regrets.  I have a pouch now and it won't function properly.
No infections... Strictures.... Nothin.  Just won't work properly.  So now I have to wait until I can afford to take off work and build myself up to have the surgery again.  First time around for me anyways was a nightmare.
Won't go into that but most don't go through what I did.
I work on Murphys Law.... If it can go wrong.... It did!
So do what you feel is right for you.
Not anyone else.

First to say - all cases are different. If I had it to do all over again I would not have gotten a j pouch and kept and ostomy.  But I was 19 and everyone thought the ostomy was just horrible for a young girl and i honestly don't remember being given a decision. It was all just done. But all pathology reported uc at the time.  10 years later they think it was crohns and the j pouch is covered in crohns.  April 2015 emergenct surgery at Cleveland clinic for an ostomy.  I still have my pouch but getting it out soon. 

 

Talk to your dr in depth and make the best decision for you.  

Dani, there have been lots of discussions here on this topic that you might be able to find by searching. This is a fantastic place to come to find out what can go wrong, but not such a good place to hear from the folks who've done well (the large majority). They have no use for a support forum.

Thank you all so much for taking the time to read my post and reply. I know that everyone has a different experience and will each deal with things a little differently I am just stressed even thinking about such a big life change again. I have grown completely comfortable with my ileostomy over the past 3 years and am just afraid to change something that is working for me even though I know I will have to do something to remove the remaining tissue whether I go with Jpouch or the permanent ileo. I will see what the surgeon's take is on Wednesday this week and have to make my decision. Thanks again for the feedback!

Personally, I would opt for the j pouch since it has I high success rate and can provide a near normal lifestyle.  Granted there can be complications, but that can occur with any option for your condition.  You may want to look into a k pouch or BCIR that are options to an ileostomy that avoid the need for an external bag.  Best of luck with whatever you decide to do.