is there a downside to having my colon removed?

I don't think the water caused a problem, its water. It doesn't realy go bad in that situation. Unless you drank from a stagnant puddle or a river,lol.
Anyway, I had my colon removed I chose a permanent ileo. So I have a permanent bag protuding from my stomach. Except that's not what its like. It doesn't stick out, I have changed clothes in front of people and they didn't. Know it was there until I told them. I have a normal life. Much much better than before. I actually think the bag is convient, I like it better than having any colon. Just my opinion though.
Surgery isn't perfect,but you won't be on tons of meds or pooping your pants or eating only a few foods. Sure, things can go wrong, but its not often
Doesn't sound like you are ready anyway, but when you are at leastyou will have a little more info

I just had the first part of my surgery. I was on prednisone for so long (two months at 40 and two months at 20 before that...and up and down for four months before that) that I will need to have three operations instead of the standard two. I will also be going through surgeries, etc. for at least a year.

I decided on surgery when it appeared that the LIKELY outcome of jpouch surgery would give me a better quality of life than I would have with my UC symptoms (lots of bloods, resistant to medication already, accidents while on Remicade/Pred both, and pred dependant). I even accepted the fact that I might need a bag for the rest of my life. The truth was, my quality of life is better with the ostomy than it was with my UC. The long term side effects of pred and the fact that other medications weren't working..well..things just didn't seem like they would get better.

I evaluated my current status in life..I had the financial and family support to do the surgery now. Surgery was not an emergency.

My expected surgery route. Surgery 1 - remove most of colon. Live with ileostomy for at least six months (to get the pred out of my system) and lose weight. Six weeks to return back to work. Surgery 2 - this is the butt kicker. Small intestines will be rearranged. Loop ileo installed (lots of leaking potential, I've heard these are a bear). I'm thinking 8 weeks to return back to work IF THINGS GO OK. Surgery 3 will be at least 3 months after Surgery 2. Surgery 3 is the reconnection. I expect a much shorter recovery, however I expect months for colon to start behaving. I'm also expecting a "year" for it to settle down. After a year I think everything will be pretty stabilized. By that I mean I will be pooping 6 times a day without huge urgency (be able to hold it for an hour or two). I will also be able to eat what I want. This is what I am hoping for and 90% of people who have their surgery at the Cleveland Clinic are "happy" with their jpouch.

Thanks, everyone for the suggestions and advice. I agree that now is not the time to get it removed, especially after hearing how long the process of recovery could be. It is definitely good to know what I'd be in store for if I ever were to need my colon removed, as summerstorm said earlier.

I'm going to speak with my GI first thing next week about rectal meds if things don't improve first. I'm still hopeful that this minor flare can be nipped in the bud through the meds I'm already taking, a more careful diet (I already eat real well, but I'll try to cut out some more "roughage") and by taking it easy for the most part.

The thing about me since my last big flare is that I get crazy anxiety whenever any symptoms rear their heads. Mornings where I wake up on my own and have 1-3 large, productive bowel movements usually lead to great, fulfilling days. Mornings like the ones I've been having lately tend to lead to boring, depressing days where I don't even get up and move around until noon the earliest. Whenever I get anxious like this the only things I can ever think about are how the symptoms could get worse and what I can do to get better ASAP to prevent them from being exacerbated.

Dmc,that can be done, but it is not the best thing and I would be wary of any surgeon who suggested that for uc. It affects the whole colon so if there is any left it will just move there.

DMC, you are probably thinking of a resection. These are performed in people with CD when a portion of the digestive tract becomes severely damaged. There's really no choice in CD to only remove part. But with UC, it's better to just take the whole colon because it is major surgery no matter what, and it is just too risky to only take out part.

sfc- I have been using mesalamine enemas for almost a month now very religiously and have not gone back into my flare yet, so they seem to be pretty effective. I am currently down to 5mg pred at this point too. Except for bumps while tapering, I haven't flared badly again as I have thought I would due to what I've been eating. So theyre pretty nice. I simply asked my dr for them.

The asking of this question is interesting, if there was no downside, we'd all have gotten our colons removed by now. UC is not an easy road, but there obviously are worse things.
There are upsides and downsides to all UC treatments, personally I think it's about finding what works and if nothing does, perhaps it's time to talk about surgery, but the problem with that is the nebulous and conflicting information out there. I question and so does my doctor whether surgery would improve my life or make it worse -again not easy choices.
We w/ UC are all between a rock and a hard place -when I was first diagnosed, I was told "either have surgery, or take all these harmful drugs", not good choices. I still struggle with all of it.
Hopefully you will find your balance, best of luck to you.

Post Edited (beatUC) : 11/4/2012 3:42:30 PM (GMT-7)

Jeeze thanks (I think)

sfc425 said...
Here is my daily med routine:

Morning: 1600 mg of Asacol HD, 1 Librax, 1 Culturelle probiotic, 1 Omeprazole Magnesium tab

Afternoon: 1600 mg of Asacol HD, daily multi-vitamin

Night: 1600 mg of Asacol HD, daily multi-vitamin

Certainly open to re-adjusting what I take. As I said, though, my symptoms don't exactly scream for anything stronger than the Mesalamine. My GI suggested I add a fiber supplement which I've done before with mostly positive results.

This is weird. My first GI (a very excellent university faculty doc) said do not take vitamins, the binders in them might interfere with drugs. Also, low fiber was best, NEVER added fiber. Different....

Also, the O M tab, isnt that an NSAID? Also bad for the gut.