Concidering surgery

ok regardless what surgery you choose.. I believe you positively need a colorectal surgeon. If you were going for a jpouch, absolutely hands done.. Cleveland Clinic is probably the best place in the country to do that. However, maybe you have not spoken to the right surgeon there.. because getting a jpouch or a perm. ileostomy does not necessarily get rid of jpoint pains. You can still have IBD related arthralgia. Yes, it seems that many of the surgeons, my first surgeon included, really pushed the jpouch without tellling the whole story.

Drive time is definitely something to consider. For hospitilizations your family will need to be there, if you have complications, that could extend them have to seek overnight accomodation. Various visits for pre and post surgeries, and tests. Also if you develop a complicataion once you are at home you will have to decide to go to your local ER, where they may know nothing about a jpouch, or make the trip back to Cleveland. If financial issues are of concern, out of town surgeries become challenging. If you go straight to perm. ileo you would require just one surgery. Sounds like in your case with a jpouch you would only have to have 2 surgeries, rather than 3.. which some of us had. But with that said... I had to switch my care to Cleveland Clinic 2.5 years ago and I drive 2.5hours each way. CC really is the best of the best for colorectal surgeries and they are also the world's experts on failed jpouches. People with jpouch problems travel from all over the world to see Dr Shen.. the jpouch guru there.

And please do not proceed thinking if the jpouch fails... you can just go back to a permanant ileostomy. That is so not how it really is. This is spoken from experience. Its not just like you try out the jpouch, find out it didn't look good on you, then go to the store and exchange it for a permanant ileostomy. You cannot go into this decision just thinking.. I'm gonna try it out. You have to feel very strongly about what direction you choose. If the jpouch fails ... after all the time, drugs, invasive tests, doctor visits.. to figure that out, you will need yet another one or two surgeries.. two if you are left very sick from the jpouch. And that surgery to remove the jpouch is a "big big big " surgery as the head of colorectal surgery at Cleveland Clinic says. And it is riddled with complications and very lengthy recovery times. And you body is left much more damaged... more adhesions, more scars, loss of some small intestine, all sorts of things.

So if you are deciding on a jpouch, you have to be fairly confident that it IS going to work for you and that you will be willing to try various drugs and things to get it to work.

As for the drugs.. with a perm. ileo, ... you may need some bowel slowing medicines like immodium or a fiber supplement. Most do not, once things settle in. Right now I take ZERO drugs for my perm ileo. Just a weekly B12 shot because I lost part of my small intestine when the jpouch got removed.

With a jpouch again.. you may need some bowel slowing medicines and fiber supplements. Most people with jpouches will at some point in time require antibiotics to treat pouchitis. Some are antibiotic dependent meaning they require them indefinitely. Some are antibiotic resistant meaning... antibiotics won't fix the pouchitis or develop crohns, so they oftenntime go to higher power drugs like 6MP or humira.

Here's a very thorough paper from the world's leading jpouch doctor.. which goes over all of the problems that can happen with jpouches and how they are treated. This paper is a bit old, but it covers well, the various problems with jpouches. I think the one newer piece of info that isn't in there is that they are now finding cancer in jpouches. So if you have a jpouch, it is a must you get a yearly scopoe.
http://www.dept-med.pitt.edu/gi/fellowship/files/IBD_Readings/shen2005.pdf

There is another post in this forum which goes over a lot of people discussing why they chose an ostomy or a jpouch. In that I described in detail what jpouch failure really means, and what the medical community defines as jpouch "success."

Either way UC since 2002 is a really long time. I was diagnosed in 2002. But in one way I was lucky, I didn't have to make the first surgery choice. It was made for me as I had a massive flare that couldn't get under control after being in the hospital on iv steroids. So it was an emergency surgery for me. Having surgery on your own terms, is much better, because your body will be in a better physical state going in, so you will recover quicker.
let us know if you have more questions.

Why are you on a forum if you do not want to hear about real world information and/or problems? If all you want to hear about is butterflies, rainbows, and fairies,... than why are you here? I can guarantee you there are a whole lot more than 5% of people who are unhappy with their jpouches. The failure - meaning excise or redo rate is at least 10%. And I know many many people who are very unhappy with their jpouches but still have them in place.

This poster is in the midst of a decision about surgery and is very concerned about her post-surgery life. But considering this poster was already not being told the full story by her surgeon, she sure deserves to know more before she makes a decision. Do you think she should not have access to a medical publication that explains the clinical treatment for the multitudes of various jpouch problems? Should she not be told she needs yearly scopes for cancer if she gets a jpouch? How could I in my human heart allow her to believe she could just "trade in" her jpouch for a perm. ileo like it was exchanging a sweater at the mall... as you have implied.

It truly is disheartening how you continue to belittle and mock someone who has gone through hell and double digit surgeries because of a failed jpouch. Your vehemence against mine and many other's health histories and complications has clearly blinded you from the fact that the poster was asking for information. And your attempt at preventing people from seeing real stories is quite biased. I am not anti-jpouch. I am pro-providing the full story so people can make complete decisions rather than powder coating things like you and many doctors do. One sided information, as you seem to be completely focused on, does not allow people to make educated decisions.

I have had FOUR ileostomies. And the only problem I have ever had with any of my ileostomies is a minor yeast infection. I have never had to have a stoma revision, I have no daily difficulties with my ileostomy, I have no limits with an ileostomy and any physical activities - including running half marathons, swimming, biking, I eat virtually anything I want, I do not live in fear of finding a bathroom, and wear normal attractive clothing. And your stating jpouches had more normalcy - guess that includes not being able to run a marathon or go on a long hike because of a jpouch like I just read on another forum, or not being able to eat lots of foods because of a jpouch. Is it YOUR opinion that a jpouch would leave you more normal because maybe you are not a physicallly active person, or your job allows you easy and often restroom access? But many others feel completely different, including a recent poster who chose a perm. ileo over a jpouch because he couldn't be running to a bathroom all the time in his current job situation.

The funniest thing about all of this... you are posting criticism of people's real world health struggles... but you don't even have a functioning jpouch. amazing. Best I can figure, is you are very scared of what will happen to you after you actually have a jpouch and reading anything about reality that isn't all peachy gives you anxiety. So maybe you should refrain from reading these forums as lots of people submit information about their real world experiences and health challenges. Also I believe there is an option on ignoring posts from specific posters. Maybe you should utilize it.

Post Edited (ddd45) : 11/12/2012 8:11:20 AM (GMT-7)

Bootstrap,

What should I do now? ddd45 scared me with her statements.

I want my mommy!!!!

Suebear you should step in here and confirm that J pouches are good.

Sniff...Sniff...

Let me say this, all surgeries come with a risk. Something could go wrong. Something can wrong with everything. Or you can look at the results most people have, and realize that troubles aren't the norm, and you can get your colon out and live a normal life. Or you can keep wandering around waiting on a cure, that probably won't come, filling your body with tons of dangerous medicines. Missing out on all your favorite foods, missing out going places, spending hours in the bathroom. Or for some people, even pooping your pants in public! How could having a bag be any more degrading than pooping everywhere? How can it be any worse than some of the stuff I see on the UC board, people who have figured out how to line their car seats so they can poop while driving? Or people who have to buy clothes in the store cause they pooped their pants? How is that better than a bag?

I wasn't holding on, what would I have been holding on to? A diseased colon that didn't want me? A miserable life where I could do nohing? I didn't have surgery earlier because I didn't know it was an option. As soon as I found out, I asked for it.
I don't think its fair to say that having sugery is giving up hope. Once again that's looking at it as a defeat. Its not a defeat! When someone has breast cancer and has their breast removed, no one says, oh she just gave up. When someone has a horrible infection in a leg that's going to kill them and has the leg removed no one says, oh they just gave up. But for some reason, people seem to think that removing a disease from inside your body and removing the need for a lifetime of dangerous drugs is giving up. Seems to me that cutting out all your favorite foods, and missing out on vacations would be closer to giving up hope.

I only had UC for 1.5 years before having surgery. I was steroid dependent. When I was not on prednisone I would have accidents on a daily basis. I consider myself cured. I do not have symptoms of UC nor do I take any medications. Even though I had complications after my first surgery, I would do it all over again to not have UC.

lady v
the nurses are the best sources and sounds like you got the scoop esp about the age thing. good info gathering and excellent thread. great discussion. glad you found your answers. Rosemary PS with my ileo bag when stoma was all good and working i travelled the world and learned to ballroom dance. as long as the stoma is all good, life is good. best wishes, Rosemary

Go to Cleveland and talk with another surgeon if you need to. You can opt for the removal of your colon and a permanent ostomy. Live with it and if it works well you are done. If you decide to go for a J-pouch then you can proceed later. I'd still go to CC as they hopefully will do the surgery lapro vs open. You want to avoid all the scarring and adhesions that come with open surgery. Pluss the CC surgeon will know best how to do the surgery should you opt to go forward in the future.

It doesn't sound like the doctors and nurses you have talked to have done a good job or you were so upset you didn't remember all they said.

I know people that are doing great that have had j-pouches for 30 years. It's not a New New surgery.