Anyone considering or have had surgery (total colectomy)?

beatUC said...
NiceCupOfTea, you'll be shouted down if you post anything truthful about surgery that is deemed negative.
I am now facing some very difficult decisions and although this board has been great for some things, help with the big decision has not been forthcoming.
It is very hard to get the real deal info about surgery because the ones who've had it have no recourse. so they talk it up, while the ones who are not happy are labeled trolls etc.
The best thing I've done in this regard was to talk to people who have actually had surgery in a neutral forum, which was a surgery support group.
I found that the frequency, depression, and complications were severely under-reported.
Sadly, I may no longer have a choice, but I just have to know what I'm getting myself into.

Sometimes we only see the world as we want to see it. You have a negative opinion of surgery already, so positive stories seem like falsehoods to you and you won't be satisfied until you hear negative stories. Fine. j-pouch.org has many more members who have had surgery and the ones who tend to stick around do so because they are dealing with issues that can arise after surgery. It is NOT a representative sample of the percentages of outcomes (you'll notice that every once in a while someone will post "I had surgery X years ago, I never post here anymore because my life is awesome, I climbed Mt. Everest," etc) but it is a realistic survey of the range of negative stuff that can possibly happen.

People who have positive outcomes stay on HW and post because we want to reassure people who are facing surgery and are scared. If I were having a serious issue, quite frankly, I would post on j-pouch.org because there are way more members with j-pouches there with far more expertise.

It is a lie that after surgery there is no recourse. ddd45 is a good example -- she never posts on the UC board here but is active on the Ostomies board. She had a very bad j-pouch constructed by an inexperienced surgeon that caused her a lot of grief, so she had it surgically removed. Since then she's become a happy active ostomate but is still dealing with issues from the unhealed wound left by j-pouch removal.

There is a difference between being unhappy AND having surgery vs. being unhappy WITH your surgical outcome. I think if you take the time to read j-pouch.org and the Ostomies board here you will see that there are many people who are honest and forthcoming about the difficulties they've encountered after surgery.

I posted my thread seeking information (positive and negative) of experiences from those having surgery, because all input is helpful. I got tons of great advice and thanks for that.

NCOT: Discussing your experience is one thing, ridiculing others for having a successful outcome is not necessary or helpful.

worthit1998 said...
I posted my thread seeking information (positive and negative) of experiences from those having surgery, because all input is helpful. I got tons of great advice and thanks for that.

NCOT: Discussing your experience is one thing, ridiculing others for having a successful outcome is not necessary or helpful.

Who am I ridiculing? Was not aware I was having a laugh at anyone's expense and no that isn't sarcasm.

I'll let you into a little secret about myself. When I read reviews, I read the 5-star revies and the 1-star reviews. Because when somebody doesn't like something that I'm considering buying, I want to know all about it and why they don't like it.

NiceCupOfTea said...
It's hardly scientific evidence, but my stoma nurse said to me that that the people she knew with j-pouches weren't doing that great..

oh for Pete's sake of course there are crappy outcomes with a jpouch. How can there not be? It's a very complex surgery! Geesh. But the FACT is there is a VERY high success rate and I choose to point that out. Anyone can go to jpouch.org right now and read about all the unpleasantries. It's there in black and white and not hiding.

Look at both sides of the coin.

Either you have surgery, have a few, some serious, or no complications but now you're normal, or classed as a success.

Or, you've either been misdiagnosed, surgery failed, or you have serious complications that won't go away.

That's what we are dealt with.

But when someone is here looking for help when they are facing depression because of surgery, we should talk to that person. Not point out success stories. I'm like NCOT, I want to see the 1-star and 5-star reviews to these surgeries. At least I'll feel like I'm not blind walking into it.

No, it wasn't originally about depression. But maybe she just wanted to warn of the mishaps and the depression that can come along with it. I don't see the point of arguing with someone over their depression, even if she refuses to listen to our advice. A catch-22 on any side. Let's leave it at that, please.

To the OP, hopefully you'll find a great surgeon if you decide to take the jump. There's enough information on here, medical websites and other forums that might help you out. If not, we have tons of resources for you to look into here about other treatments. Frankly, that's all we get in the UC world.

Worthit- I was one who mentioned that a 3 step allows one to "test drive" an end ileo. (I even tend to think that really almost all jpouches should be done in 3 steps, because it seems to me that stats such as 1 in 10 Comfirmed UCers really having CD all along are just too high to mess around with risking 2 step surgery- just my oionion though). I just wanted to add though that it seems many surgeons want patients who desire an end ileo, to have "the works" in one surgery including complete removal of the rectum, so if one chooses to stop at step 1 of a 3 step, some surgeons will say that one will "eventually" need another surgery. In my case, my rectum never was and remains a non-issue, so to say that I have no plans to ever get more surgery is an understatement- I really dont plan to do anything more unless my rectum (which does nothing other than pass a timy bit of mucus painlessly, via a normal BM of sorts, every 5 days or so) one day gives me trouble. I'll get it scoped annually too. Technically I hear it can be converted to a jpouch up to 10 years or so after surgery. I do have no real issues with this ileo at all though- I am pretty much the polar opposite of NCOT in that respect. My life is far from perfect, that's for sure, but that has literally nothing to do with my surgery,which has eliminated all my pain, all my urgency, and all my limitations due to IBD- other than that I sometimes (not always, just sometimes) poop when I have to go to pee, my life is as normal as it would be without IBD- I have no hesitation in saying that without qualification. I realize that there is no guarantee that I wont one day need more surgery but I wont let that fear rule my life. I can however see how eliminatung IBD can be a bit like winning the lottery- you think you are now going to be dancing for joy and as far as the disease goes, I am, but many of life's other problems do all go on even after you "win" the jackpot.

Post Edited (Probiotic) : 8/22/2013 1:26:07 PM (GMT-6)

Once they remove the colon, they can do the only definitive test for Crohns. You can shower with or without the ostomy bag - I personally loved taking everything off once a week to feel cleaner, but after step 2, when I had the loop ileo, the output was too constant to be able to do that without a big mess. As for lapro or open, it depends on your surgeon and your condition. My step 1 was totally lapro. Step 2 was a 3–4 inch bikini line incision. Step 3 just used the stoma opening with no additional incisions. None of the incisions are very noticeable. I don't think most surgeons do large vertical open incisions unless it's an emergency, but there are a few out there.

Alison - You've been soooo helpful and have armed me with a boatload of smart questions to ask during my consult.

Srb1971 - Thanks for the info.

Best of luck to both of you.

Great tidbits. I'm a bather, particularly in winter. Plan to pay it forward someday as you've done for me.