colectomy quandry

Why do you need your colon removed? Diverticulitis, Crohns, UC, etc...

I have FAP and during my last colonoscopy they found some changes in a few of the larger polyps. As I am now getting older they have decided the risks are too high to keep the bowel. sub total is no bag and total is a bag as far as the surgeon advised me. I just don't know enough to make an informed decision and need some help please as totally worried

Post Edited (telha) : 3/8/2016 1:23:15 PM (GMT-7)

that's the one the surgeon advised as sub total, thanks at least I now know the proper name. But I still am not sure as to this or the total(with permanent bag),please advise me

If you are thinking of researching a J-Pouch for FAP they have a whole forum dedicated to FAP on J-pouch.org.

I wouldn't rush into anything unless it is necessary; weight the pros and cons of the different surgeries.

I just read about FAP.

You can still have your rectum and no bag with a total colectomy.

http://www.mayoclinic.org/tests-procedures/colectomy/home/ovc-20157031

I had a total colectomy beofore I had an ostomy which means my large colon was removed, I could still go like normal from my anus, but then needed to get a bag.

a) Total colectomy just means they remove ALL of your large colon and reconnect the small intestine to your rectum and anus and you go like normal.

(Unless bag needed.)

(Ileostomy since you no longer have large intestine.)

b) Subtotal colectomy means they remove only PART of the large colon and reconnect the rest of colon and small intestine to rectum and anus and you go like normal.

(Unless a bag needed.)

(Colostomy since you have a 'PART' of your large intestine left and you have small intestine.)

c) Protocolectomy is when they take colon plus rectum and you 100 % need a bag.

Here is a good explanation under QUESTIONS: "Will I need to have a temporary or permanent stoma after surgery" heading:>

http://www.uchospitals.edu/specialties/colorectal/services/colectomy.html#P13_569


OR:>


From this:
https://en.m.wikipedia.org/wiki/Colectomy


1)When the entire colon is removed, this is called a total colectomy, also known as Lane's Operation.

2)If the rectum is also removed, it is a total proctocolectomy.

3)Subtotal colectomy is resection of part of the colon or a resection of all of the colon without complete resection of the rectum.

My total colectomy may have been a success. Meaning no ostomy. BUT keep in mind I do not have UC or Crohns so not the same challenges as many here. Out of the gate from my colectomy, I had complications out of the "norm" from my total colectomy. Adhesions and small twisted bowel, which meant I still couldn't go. After removing adhesions and untwisting small bowel a few months later, I now have to wait until my rectal muscles etc get strong enough as I put on weight. Then in 6 mos - 1 yr from Dec 2015, I reconnect to JPouch or direct reconnect.

Hi there, sorry to hear that your FAP now has become emergent.

about 4 years ago, there was a young 19 year old girl on this forum with FAP. I still keep in touch with her. Her mother died of FAP in her 20's, and now this young 19 year old has the same fate. Her surgeries went great....first a total colectomy with a loop ileostomy for about 5 weeks. The reason she went back so soon to get the ileo-rectal anastomosis is because of her surgeon switching hospitals and her insurance. Her take down of her bag went well, and she's happy to not worry about her familial disease.

My surgeon told me a story 3 years back of the worst FAP case he's ever done. A late 30 year old male, that went untreated for years due to personal reasons...no insurance, no employment, divorce, kids, living with his mother, etc. This became a pro bono case for my surgeon. Ironically, my surgeon operated on his mother 25 years back when he was a fellow. The mother has been great ever since, now the son. Since it was so aggressive, there was signs of issues with his bladder, stomach, etc. My surgeon did a total colectomy, and he had a loop ileostomy for about 9 months. He too wasn't certain that because of the aggressiveness, that it would be a permanent ileostomy. He needed to be treated for his other issues in the meantime. Once cleared for surgery, was scoped of his rectum, he had his take down and is doing great like his mother. My surgeon has since lectured this case at Mayo.

In cases of FAP, your rectum would stay intact, and you would have an ileostomy for a short time, until takedown. Your entire colon will be removed, and your ileum attached to your rectum. You will do just fine without your colon, maybe a couple bowel movements a day. FAP is completely treatable with surgery, thank god because it is a killer.

Post Edited (windy city) : 3/9/2016 11:10:59 AM (GMT-7)

Call me pedantic, but I'm surprised people refer to j-pouch and ileo-rectal procedural outcomes as "going like normal"! Granted, they result in defecating from the Anus, but numerous loose movements per day, along with peri-anal excoriation from stomach biles, don't equate to "normal" in my book!
The OP made reference to getting older, I'm interested what age group you belong to? These surgeries and the recoveries from them are extremely tough and get tougher with age. It's another thing to consider in your decision.

Marianne, my reading here and in other places leads me to believe that the vast majority do experience those things. As you say, it's your "new" normal.

Silent Lucidity,

I'm not one who shares those problems you have, but even jpouchers that do still say they prefer their new plumbing over life with UC. For FAPers, surgery is a choice between life and death.

Sue

suebear said...
Silent Lucidity,

I'm not one who shares those problems you have, but even jpouchers that do still say they prefer their new plumbing over life with UC. For FAPers, surgery is a choice between life and death.

Sue

I think his main point was that there is nothing "normal" about 6-8 loose BMs a day and bile acid diarrhoea which causes butt burn. Nobody was trying to deter the topic creator from surgery - they absolutely should have it if they have FAP.

Whether they have an ileorectal anastomosis, j-pouch, or ileostomy is their choice. I've tried to give them info to help them make up their mind, but ultimately it is their choice.

Suebear, I no longer have those problems, or the pain that was making me suicidal, as I had the good sense to return to an Ileostomy. I'm certainly not trying to deter the OP from surgery, merely pointing out that an Ileostomy may be the best choice for them. As I've said on this forum before, many j-pouchers have only experienced a loop Ileo. They may well think that life is better than the UC days, but still don't know if a "proper" Ileo would be their best option. Besides which, I still don't believe all j-pouchers are as happy as they say, just too "Ileophobic" to admit an Ileostomy would be their best choice.
NCOT, thank you for actually reading what I wrote, you seem to be the only one that got the gist of my comment.

I think the problem with surgery is that no one knows how you're going to be afterwards. No one can say whether you're going to like the ileo, or think it's a pain, or if you're going to like the j-pouch, or think that's a pain. Either route can lead to a perfectly acceptable lifestyle, that said, either can also lead to an unacceptable lifestyle. There are really no guarantees that you will have a great result.

I have a j-pouch,, and like atwoodt, I have been living so much better than I did with UC. Dare I say, I am happier than I was with the end ileo too, simply because I didn't like having something attached to my body all the time. It wasn't the worst thing, but not something I *loved*. Not that I love going to the toilet 7x a day either, but to be honest, I went just as much to empty with the ileo. it's just a matter of whether you want to empty an internal or external pouch. I wasn't keen on buying supplies for the rest of my life either. Granted, with the end ileo, I got great wear time out of the supplies and it was super-easy, WAY less maintenance than the temp loop. If I had to live with the loop I had, I would have lost my mind. The end ileo, I could have lived normally and I would have gotten over the "having the bag" thing quickly - knowing it was permanent.

I also realize that the end ileo is the best solution for a person with UC when you really break it down. No chance of pouchitis, no problems. One surgery and done... If I were looking at all stats and being 100% logical, yes, I would have chosen that route. On the other hand, I am youngish and healthy, I was hopeful for a good result... the ileo will be there if I NEED it. For someone without inflammatory issues, I would think the risks are lower because you're not going to get pouchitis. Internal pouch is more surgeries, so if you're opposed to that, that is definitely something to consider.

As others have said, if you can keep your natural rectum, that may lead to an even better result - compared to a j-pouch. The rectum is better for stool storage than the small intestine (j-pouch) and absorbs more liquids, meaning less trips, maybe less acid?? I can safely say I would go for that, but I went for the j-pouch, so I guess that's obvious. Healthy rectum, yes please, that would probably put me in an even better place and I consider myself in a pretty good place already

It's easy to say 6x a day, acid output is not normal, but it's the same output you're getting regardless of j-pouch or bag, you either empty out your butt or you empty it out of a bag. Nothing about either is particularly "normal" - the j-pouch feels more normal to me over emptying an external pouch, simply because that's what I did most of my life.

Good luck to you!