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Ulcerative Colitis
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Posted 11/23/2011 12:57 AM (GMT 0)
I wonder why I can't just keep my sigmoid colon and ascending colon and have the rest removed. While the sigmoid does become affected during a flare it starts with, and is worse in, the descending colon, followed by the transverse and sigmoid last. That way seems like a good compromise. I asked this to my GI the last flare and he just said that if they go in they like to just remove it all for certainty. If they connected the ascending to the sigmoid would the flare just rip through the ascending as it did the parts that were removed?

I hate the thought of a bag and the J-pouch seems like a lot of risk...there's the taking out the rectum part that scares me and I would just want more of my organs.

Posted 11/23/2011 1:40 AM (GMT 0)
If you have surgery for UC, the whole colon from end to end has to go or you will just risk it coming back in whatever part of your colon is left. I'm fairly certain a surgeon wouldn't even do it that way....they take the whole thing.

I have a J pouch and I can tell you I couldn't be happier with my results. My entire colon is gone including my rectum. I haven't had any issues at all and have returned to a normal life as it was before UC. Yes, it's scary and I fought it for a long time until I just couldn't take living with UC anymore. Knowing life now being UC free, even if my j pouch failed me tomorrow, I know I would be okay with the bag just because I am free of being so ill.

You really have to be ready to make that final decision to have surgery because it's a huge thing.
Posted 11/23/2011 2:25 AM (GMT 0)
I'm sure it's been done and documented at some point....that's how they know. Next time you see your doctor, press them for a full answer....I'm sure they would explain it better in medical terms. That's why they get paid the big bucks. ;)
Posted 11/23/2011 3:51 AM (GMT 0)
I'm sure it has been done also. And its common sense, the disease is ulcerative collitis, if you leave part of the colon you leave the disease. If you remove the colon you remove the disease. Be wary of any dr who suggests a partial surgery.
I have a bag, and I know a lot of people hate that idea, but do you hate it as much as having active uc the rest of your life? I thought it was a whole lot better sounding! And its great, no regrets, except not doing it sooner.
Posted 11/23/2011 4:07 AM (GMT 0)
I read that insurance won't pay for it because "clinical evidence shows that the UC will eventually come back". So says some guy on another website.
I just want the descending colon removed but it would probably show up elsewhere. I imagine insurance is the key. For surgery to occur and insurance to pay there has to be hard evidence something will work.

There's not in this case.

Posted 11/23/2011 2:32 PM (GMT 0)
Burli,

My UC was limited to my rectum and within the rectum the trouble spot was about the size of a quarter. My life was miserable with this very tiny inflamed area that I could not get into remission. When I had surgery, and pathology was done on the colon, there was UC in the colon. But for 2 years the UC in my colon was never the problem, only the spot in the rectum. To have surgery for UC is huge. I could imagine nothing worse than having a resection only to have to return to the OR one day to have additional surgery. I do know of a couple of people who did find surgeon's that offered them resections. Both ended back in surgery some time later to have the full proctocolectomy. I'm sure if you beat the bushes you could find a surgeon to do this, but getting your insurance company to approve might be a problem. However, a surgeon that would do a resection, in my limited opinion, is not a surgeon I would ever want to cross paths with.

Honestly, life post surgery is so good, I cannot imagine life with a resection. Most of us take no meds and live full active lives. Why compromise such excellent odds?

Sue
Posted 11/23/2011 2:34 PM (GMT 0)
Thank you suebear...again.
Posted 11/23/2011 4:19 PM (GMT 0)
     I understand your dilemma completely!  Only the first 20 cm of my rectum was ulcerated and this was for the entire 12 yrs I suffered.  The rest of my colon looked pretty good.  I just had minor diverticulosis.   I can still see the look on my surgeon's face when he told me he would not just take the rectum...very downcast.  Guess he thought I would say, the heck with the operation.  I was not a candidate for j-pouch and my surgeon insisted I have a stress echo before he would operate.  I was just so sick of being sick, I told him I had no problem with wearing a bag.   I am soooooo glad I had that operation.   Unfortunately, I will forever have osteoporosis thanks to my extensive use of prednisone, but I am happy to be off all those other meds.  I have my life back yeah .
Posted 11/23/2011 4:47 PM (GMT 0)
Years ago, surgeons removed only the affected part of the colon. Their thinking was, why remove healthy tissue? However, over the years and with more experience dealing with UC, they found that removing only the affected section inevitably led to a recurrence of the disease in the remaining colon.

After one resection, a second is more difficult and increases the amount of scar tissue present. Multiple surgeries can make it more difficult to achieve a satisfactory result when a pouch or stoma finally must be created. Ergo, the judgement that in UC patients only total colectomy is appropriate. I doubt any reputable surgeon in the US would agree to a partial resection.

Remember, even as recently as your grandparents' generation IBD was not really clearly identified and treatment was very limited. Typically we see diagnoses such as spastic bowel, chronic dyssentery or weak colon from those days. So yes, docs are still learning and research is making slow but sure progress.
Posted 11/23/2011 8:16 PM (GMT 0)
That's great information...exactly what I needed to hear. Thanks y'all
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