Total colectomy after six months survival rate is 5 percent ?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

smarty
Regular Member


Date Joined Jul 2009
Total Posts : 96
   Posted 8/26/2011 11:56 PM (GMT -6)   
Hi

I just heard that from a Chinese doctor in Taiwan that survival rate of tc after 6 months is 5 percent.

Anyone did the research ? I plan to have tc. Scared, any comment.

Smarty

seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 8/27/2011 5:57 AM (GMT -6)   
Is it possible you transposed those numbers?  If that's what the doc said, he's completely misinformed.  It's not quite the same number, but mortality after colectomy in the US is less than one percent.
 
I can't imagine a scenario where mortality reaches 95% in six months -- unless the colon is being removed with a rusty spoon in filthy conditions with no antibiotics afterward. 
 
There are a lot of factors at play, and perhaps in Taiwan total colectomy is generally reserved for older patients with advanced colon cancer or something like that.  Otherwise, I wouldn't worry about 5% survivability.

Shaz032
Veteran Member


Date Joined Feb 2003
Total Posts : 1251
   Posted 8/27/2011 6:33 AM (GMT -6)   
So only 5 percent of patients survive longer than 6 months after the surgery? If that is what he is saying, don't listen to your doctor AT ALL! He's completely wrong. If the mortality rate were that high, most of us wouldn't be here posting months and years after their surgery and the 5 percent figure would be all over the message boards telling people not to bother with surgery (why should they if it only gives them another 6 months?)

As an example, those of us with UC and CD aren't going to die from our diseases so why would we have surgery if it's, ultimately, going to end our lives? That doesn't make sense.

As seconder said, the survival rate is more like 99.9 after 6 months. For the unfortunate few who don't make it, it's usually due to aggressive cancer or something similar.
Ileostomy for 34 years due to UC. I had my surgery at 10 years of age.

Moderator of the Ostomy and Psoriasis Forums

_______________________________________________

I'm not a complete idiot - some parts of me are missing!

polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 8/27/2011 2:09 PM (GMT -6)   
smarty
Why a chinese doctor in taiwan? Are you in taiwan? How good is this doctor's english? Perhaps 5% is a misunderstanding.

Dan

smarty
Regular Member


Date Joined Jul 2009
Total Posts : 96
   Posted 8/27/2011 2:35 PM (GMT -6)   
hi

i am not in Taiwan, is my brother read the news by the doctor in Hong Kong.

still thinking about tc of severe constipation, these 3 years I always a months no poop, very suffer.

smarty

polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 8/27/2011 3:53 PM (GMT -6)   
smarty
Like everyone else said, he's wrong.

Dan

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 8/27/2011 4:21 PM (GMT -6)   
Maybe it was that single doctor's survival rate but like others say that could be because he only operates on very ill cancer/terminal patients. I would research the surgeon you are going to use for your operation and find out his survival rate. Ths should put your mind at rest as it is generally a very good outcome for this type of surgery.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, azathioprine, codeine, immodium, simethicone.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 8/27/2011 6:05 PM (GMT -6)   
Make sure you talk to the surgeon YOU CHOOSE and ask him his survival rate. It is DEFINITELY not 5%. That is absurd. I know you are VERY nervous about this; you've posted many times saying how miserable you are and how scared you are. But honestly, we have all been there and we are all living proof that it can turn out GREAT! Just go see a surgeon IN THE US or CANADA (as I think you're in Canada if I remember right), and see what they say and what they recommend. It seems that all of the information your family is giving you out of Hong Kong is biased and incorrect. You really need to do your own research because it's not your family's life. I'm sorry if this sounds harsh but that is really what it comes down to. YOu can spend the rest of your life being nervous but you're going to be uncomfortable and miserable and not pooping. At this point it sounds like you're so miserable that I don't understand how the surgery could make things worse!! I know for me it couldn't have.

smarty
Regular Member


Date Joined Jul 2009
Total Posts : 96
   Posted 8/27/2011 10:12 PM (GMT -6)   
I see many surgeon doctor in Canada, they all said the surgery is very dangerous, and refused to do the surgery for me.

Because the laxative usually is not working, even working, it just very little to come out. So l can't do the colons copy, l already have 3 years did't check. I have constipation for 20 year, but these 3 years is more severe.

All doctormin hong kong they can't do surgery for me, if l can't clean out the poop, it will get infection, recently l saw 2 news in hk, 2 patient remove the colon, 1 was coma after 1 week the doctor open surgery for him, they found his stomach full op poop,then he die.m

Another case is the patient bleeding 6-7 litre,after she die.

Don't know what to do now.

Smarty

smarty
Regular Member


Date Joined Jul 2009
Total Posts : 96
   Posted 8/27/2011 10:20 PM (GMT -6)   
Is it too dangerous if I insist to do surgery even have poop inside.

Really don't know what to. Constipation really ruin my life. No quality of life at all, suffer

Smarty

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 8/27/2011 10:40 PM (GMT -6)   
     Your problem is completely different than mine but I had my entire colon and rectum removed last year and have a permanent ileostomy.  My problem was ulcerative proctitis.
     I was not cleaned out prior to surgery.  All my surgeon required me to do was only drink clear fluids 24 hours before my surgery.  I couldn't believe it!  Just for good measure, I stayed on a clear liquid diet for 48 hours before my surgery.   I survived and feel soooo much better.  Guess my surgeon knew what he was doing.
      Someone gave you misinformation.  Seek out a good colorectal surgeon to see what can be done for you.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 8/28/2011 9:49 AM (GMT -6)   
Where in Canada are you? I am SURE there are some Candadians on this board who can recommend some good surgeons to you. Your problem sounds so similar to so many people on this board who have had the surgery and are doing GREAT! You need to find a surgeon who will do this. You will be fine. Complications that bad are really rare.
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

Alibee
Regular Member


Date Joined Oct 2010
Total Posts : 286
   Posted 8/29/2011 12:23 PM (GMT -6)   
Smarty - you just haven't found the right doctor. Where are you now? I know there is a doctor out there that can help you get the information and the help you need.

The information you are being given is just wrong. Don't let it make you feel hopeless. I have terrible constipation and I had to have a colonoscopy last year. I was worried I would not be able to clean myself out, and I told my doctor this, and she worked with me to put together a 3 day prep. I had to drink a LOT more laxatives than a normal person before a colonoscopy, but it did eventually do the job.

If you tell us where you currently are located, or where you will be soon, maybe there will be someone on here who can suggest a doctor in your area.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 8/29/2011 7:45 PM (GMT -6)   
Smarty,

Your 8/27 post said that YOUR BROTHER told you that he read this! Don't forget your brother does not want you to have this surgery in the first place! Naturally he made up a scary statistic.

The 8/26 post said that you heard this scary statistic from the doc himself. Over here in the US the statistics are obviously a LOT better. As others have said, the mortality rates are most likely from the disease (especially Cancer) for which some people have the colon removed, not from the removal of it.

If we all died from having our colons removed most of us would not be alive to post here! Most of us are colonless or as in my case without the use of the colon. And we are all still here.

I do hear your concern about having the colon out without being able to clear it out. Others on here with colonic inertia start the prep a few days ahead of time as they need more time than the non-inertia people to clear out, but it is still possible. I THINK, they tie the ends of the colon off then just remove it, but I am not doc.

You need to get a reliable FRIEND, not your brother, to go with you to some consults at some big name hospitals in Canada or even down into the US and get the real scoop because so far you do not have it. It is possible to do by-mail consults as you may not have the money to go to all these hospitals. But call around and send test results. Most surgeons respond to their mail or email or faxes. There is danger with any surgery, look at my case, and I'm still kicking around and traveling up a storm. Good luck Smarty. IF I were you I would take some action if you cannot go on as you are, which it sounds like you cannot.

Best wishes, Rosemary

Bay Area Guy
Regular Member


Date Joined Jul 2010
Total Posts : 301
   Posted 8/29/2011 8:16 PM (GMT -6)   
I agree with stripey's post. It's likely the survival rate was in regards to patients with some kind of advanced cancer that, as part of their treatment, undergo a total colectomy. I can't imagine any doctor suggesting a treatment that has a 5% survival rate. You should talk to some GI doctors in your area and see what they have to say.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 8/29/2011 9:07 PM (GMT -6)   
Also, keep in mind that a lot of people have emergency surgery -- it's not ideal, but people go into surgery with no prep at all, and it still works well.

It would be completely unethical to do a surgery with 5% survival rate unless the disease had an even lower survival rate.... I don't see how that statistic is even possible.... any treatment with that high a failure rate would be discontinued.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 8/29/2011 9:33 PM (GMT -6)   
Guess it's time to cash in those retirement savings and head to Aruba since I've only got one month left. Might as well make it count!

Seriously though, that number is nowhere near correct. I think you already know that. If you are looking for excuses to not get the surgery, then just don't do it. Stop trying to scare yourself and other people.
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery 3/22/11, Steps 2 & 3 TBD
http://life-takes-guts.blogspot.com/

smarty
Regular Member


Date Joined Jul 2009
Total Posts : 96
   Posted 8/30/2011 1:34 AM (GMT -6)   
Hi

Thanks for your valuable opine.

Christine1946

Did you mean you can't poop even take the strong laxative like me.so you have poop inside when you have surgery ? Even little poop can't come out before surgery ?

Smarty






I will do the research, and I live in Calgary

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 8/31/2011 9:48 PM (GMT -6)   
Smarty,

I found a colorectal surgeon for you in calgary, his name is Dr. Daryl Jenken. He gets great reviews. I have posted to you under several of your posts so you will see it. He gets great reviews and has taken out many people's colons successfully. Get started on this and you will wonder why you waited so long. Don't tell your brother you are going. His heart is likely in the right place but you are the one with the colon issue and you have a right to see this doc on your own. All my best, Rosemary

smarty
Regular Member


Date Joined Jul 2009
Total Posts : 96
   Posted 8/31/2011 11:04 PM (GMT -6)   
Hi Rosemary

Thank you thank you for searching the doctor for me.

I have been to my family doctor many time, she recommend a few colorectal doctor for me, they all said they don't do surgery for constipation.

But, I will beg my family doctor refer me to dr Daryl.

Will keep you inform what is the outcome later.

Smarty

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 9/1/2011 12:42 AM (GMT -6)   
Good Girl Smarty. I know that we are from different cultures and I honor you and yours. I do realize that where you are originally from things are different from here in the states, in some ways anyway. But, one suggestion. don't beg your family doctor for a referral to Dr. Deryl. I assume you need the referal for insurance purposes. Instead of begging, say that due to your 2 (or 3 year-long) battle with chronic constipation, you NEED a referral to dr. Deryl. You as the patient have a right to this referral. You in no way have to beg. You must reframe your entire line of thinking here. It is your doctor's job to give you the referral. Your doctor works for you, not the other way around. I know this is a difficult concept. I am from the US and even I have a hard time reinforcing this concept on myself. I'm so glad you are going to take action. I know you will do well. All my best, Rosemary

smarty
Regular Member


Date Joined Jul 2009
Total Posts : 96
   Posted 9/3/2011 12:20 PM (GMT -6)   
Hi Rosemary

Thanks for your valuable opion. Will keep you post after seeing the doctor.

Actually I already have the marker test 3-4 years ago in Canada, after 1 week all the markers was still there, the g.I. Doctor refer me to the surgeons, they all refuse to do surgery due to constipation, so I don't have much hope here.

In hong kong doing this surgery approx. Cost us$30,000 but not include any complication. I am afraid it end up huge figure I can't afford it.

Thank you.

Smarty
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, September 22, 2018 7:22 PM (GMT -6)
There are a total of 3,005,753 posts in 329,260 threads.
View Active Threads


Who's Online
This forum has 161800 registered members. Please welcome our newest member, Envsciguy.
300 Guest(s), 9 Registered Member(s) are currently online.  Details
Darwayne, BossJ, Girlie, Redwing57, WalkingbyFaith, Q22, InTheShop, beave, Dodgegrl_02