Josh, you have a big decision ahead of you.  You don't say how old you are and some of what you decide may depend on your age.  First off, I would get a second opinion.  Secondly, if your younger you may want to seriously consider a j-pouch.  Just make sure that the surgeon has done hundreds of them.  You don't want a newbie or someone not very experienced working on you.  This is a serious operation.  My son had his lg intestine removed 3 years ago at age 23.  He had had UC since the age of 6.  There was no way he was going with a permanent Ostomy at that time.  Unfortunately he had a lot of complications, not due to surgery, but the way his body reacted.  And there can be complications.  But having a permanent Ostomy at a young age can present its own issues.  There is a lot to consider but you certainly have come to the right place!

dianne 

Thanks Dianne, I'm 36 years old.

Much to contemplate, to be sure. 

So, here is the deal: the satisfaction rate is pretty similar between end ileostomy and j-pouch. Neither one is without potential complications and pitfalls. But, for now, j-pouch is the preferred option and is considered the gold standard. This is because the complication rate is reasonably low and the quality of life is generally good after adaptation. Ileostomy is a fine alternative, but there is the "hassle factor" of the appliance, along with the cost (insurance coverage varies).

For me, I wanted the option for a more natural solution. If it failed, at least I tried it. But, pouch removal is no simple fix, so best to think of your choice as permanent. If you opt for an end ileostomy and have your rectum removed (recommended if you have dysplasia), a future j-pouch is not possible.

I was 40 when I had my j-pouch. That was 22 years ago. I still have my j-pouch. It's not perfect, but nothing is.

Jan

Litemyster, had my JPouch 6 months ago.  my journey sounds similar to yours.  I had a diagnosis of ulcerative colitis which was 'will treated' with diet.  I was on asacol but really I had no symptoms. I could miss doses and not notice a difference.

I was routinely screened and were monitoring a patch they considered to be low grade dysplasia.  For nearly 10 years I resisted the operation (I just felt it was fine).  Each visit to the docs they got more alarmist, until finally be gave me an ultimatum.  He said it was a DALM (dysplasia associated legion or mass) and would lead to cancer if I didn't already have it.  He said it needed to be removed immediately and also reasoned I had screening as a preventative measure, if I wasn't going to act on it there was no point in screening.  Biopsies always came back inconclusive but second opinion supported my doc so I had the big decision

I opted for JPouch and was in hospital 4 days later (if you know the British NHS that is Amazing).  I had the 2 step, ileo and pouch creation first then connection in stage 2.

I will say at the time (and maybe still) I was angry.  They could find no signs of any dysplasia on my removed colon at all.  I felt like it was all for nothing, however I realise in that position docs were correct to recommend surgery.  And I could do nothing but accept there advice when the big chips were down.

JPouch works well with Ulcerative colitis and is in fact a complete cure!  You can't have UC without a colon!  The picture isn't quite as clear for Cohn's sufferers

Personally I didn't get on with ileo, but I only had it 3 months, also end ileos are better than the temp ones (which move grow and shrink).

I think established wisdom is to head toward JPouch, you will get a few months on the ileo anyway and can stick with that of you like, but pouch will give you hope of you don't get on with it.  I can't really think of a reason not to try a jpouch if your are a healthy now but it is your decision.

You should really find a doc that loves JPouch if you are going to proceed in that direction.  You wouldn't trust a chef that doesn't like food....

Wishing you the best, this forum is amazing way to find advice and guidance.  No question to large/small or embarrassing lol.

I had same thing, when they biopsied my colon when it came out they found no dysplasia.. I had 3 different doctors say I had low grade dysplasia throughout my colon, but found nothing when it was out

Thanks for the replies.  My surgeon is well versed in J-pouches, and is know well outside the immediate area, I'm not concerned from that perspective.  More concerned about long term, with UC patients having ~45 - 50% of developing pouchitis, and the potential that can be come chronic, along with some of the other challenges of a pouch.  Regarding the dysplasia, the local reading on the biopsies was a couple of areas of dysplasia.  They were sent out to U of Michigan for a second opinion, that opinion was DALM throughout for two sets of biopsies over the past year. That lead my GI doc to recommend surgery rather urgently.

hmm as far as I know there is no identified cause of pouchitis.  People with crohns don't tend to get a jPouch because its made from small intestine which obviously is what crohns affects, but I've not heard of pouchitis occurrence being linked to UC.   Moreover the 45 - 50% developing pouchitis sounds like the general odds of getting pouchitis (ie not specific to U/C). 

The conventional wisdom is that you cant have colitis without a colon.  Perhaps your docs are interpreting 'stats'.  Ie they operated on x people with UC and 50% of them got pouchitis, but that could be misleading for youR situation as the conditions are well treated.  

the longer and more severe the symptoms, the more likely that crohns or pouchitis will develop, so again if you are healthy and the surgery is elective you stand a good chance of getting a good pouch..   

Pouchitis is usually easily treated even if you did get it,..

I have always been way too enthusiastic about surgery, jumping into it with barely a second thought...too impatient and rarely willing to wait...So thinking things through is a good thing...lists help, pros v.s. cons and what you want and expect from life post surgery or post pouch...your age and your job may play an important part in your decision-making process...I knew that I wanted to take the world by storm, travel around and feel free (that was 38 yrs ago...life was different and things weren't very easy for people with outside bags...A pouch was my only chance (as far as I was concerned) to live my life the way I had imagined it)...

So, I chose quickly, not fully understanding what the long-term outcome could be...then again, I chose right for myself...and have rarely regretted it...for me that means that I knew myself well and what I felt comfortable with...

The real question, in my opinion, is...what can/could you Not stand as a lifestyle? What is the real deal-breaker for you? What kind of things make you cringe or uncomfortable? 

I wanted to live my life a certain way and my pouch offered me that possibility...no matter what you chose you will have to deal with some sort of problem...you are not getting a pouch for the fun of it so no matter what the underlying pathology, complications are always possible...

Just don't waste your life waiting for things to happen to you or living in fear.

Sharon