Do I remove the colon?

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viking99
New Member


Date Joined Nov 2007
Total Posts : 13
   Posted 3/21/2008 10:20 PM (GMT -7)   
I am 31 year old male that has had UC for about 10 years now and had a colonoscopy today.  Turns out that my left side of the colon is really a problem.  Severe colitis with the inside of the colon "carpeted with polyps".  The doc said that based on the severity we may have to move to take my colon out...but he surgeon is saying that we may able to wait a year...we await biopsies.  (FYI - my biopsies in the past have always come back negative) 
 
Does anyone have experience on this front?  At first I was like, "okay i will do it"...but now I am starting to freak out on the surgery....My doc says they would have to remove the whole colon.  I guess good new is that I am "cured" of colitis but bad news that concerns me is that there are possiblites of complications due to the surgery.
 
Did anyone here go trough the same thing?  Thanks in advance.

EricaM
Regular Member


Date Joined Jan 2007
Total Posts : 184
   Posted 3/21/2008 11:38 PM (GMT -7)   
There's a great site with message board dedicated to the j-pouch surgery:

http://j-pouch.org/groupee/forums

I have crohn's and had my colon removed 3 years ago and I live with an illeostomy. Since you have UC you are propably going to have a 3 step surgery and the end result is a j-pouch. This is not a cure rather it is cutting out the disease. You are left with 2 centimeters of rectum and that means you still have uc and can still get rectal cancer. that is why patients are told to get an annual sigmoidoscopy and pinch for biopsy every 3 years. I have an aunt who had this surgery 15 years ago and has had no problems. Her son-in-law also had the surgery and he is doing well and it's been 3 years.

Where do you live? there are many excellent hospitals in the country that specialize in this surgery.

Erica
Erica
Crohn's and Ostomy in 2004


Rytm09
New Member


Date Joined Feb 2008
Total Posts : 16
   Posted 3/22/2008 3:42 AM (GMT -7)   
Sorry to hear about u.
Actually v r also in similar kind of situation.My dad has UC for 6 yrs now and has been advised for surgery.He also has severe left sided colitis with polyps.

Doctor has suggested for a surgery...I am still gathering info about this surgery.Got good piece of suggestions from this forum too.

But still v are very much in a situation of dilemma about post surgical complications and ofcourse about this major life change..

Well....Wish u luck dear!!

Erica---We are in India...are u aware of any hospital in India that specialize for this surgery and will be the best for us??


Thanks,
Nupur

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 3/22/2008 4:50 AM (GMT -7)   
I'm just like you, viking! My colon is in very similar shape as yours, the polyps & the disease, based on scopes, & my GI has been recommending surgery for well over a year now. I am finally taking his advice- surgery scheduled for May 7th. My surgeon hasn't given me an opinion re. now/later for the surgery, we just talk about the actual procedure. As far as waiting a year- I wouldn't. I myself had surgery originally scheduled for last November & cancelled it- I wish I hadn't. For so many reasons- by now, I'd be well on the way to good health, I would not have had the complications that have arisen since then, & mentally, it's a whole 'nother period of emotional adjustment. Not fun. Plus, what's a year? I mean, if you know you are going to have to get it out eventually, just go ahead & do it. As far as jpouch vs. ileosotmy goes, I disagree with Erica- there's no "probably" about it- you will decide what type of surgery you get. I am not opting for a jpouch & I have UC also- I choose a perm ileostomy, with removal of the rectum. Which is indeed a "cure" for UC. After doing a lot of research, I just found the jpouch to be not for me. I hope this helps- just wanted to let you know I'm in the same boat. It sucks, for sure, but then again- is it really so bad? No one needs a colon to live a good life.
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 3/22/2008 7:39 AM (GMT -7)   

I had jpouch surgery 7 years ago for refractive disease.  I have never regretted my decision.  I am healthy, happy, and extremely active.  I also suggest you go to www.j-pouch.org for more information on j-pouches, k-pouches, and permanent ostomies.  There are over 6000 members on that site. 

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


EricaM
Regular Member


Date Joined Jan 2007
Total Posts : 184
   Posted 3/22/2008 9:32 AM (GMT -7)   
Eva,

With a j-pouch they use a bit of the colon (2 centimeters) as a cuff to connect to the rectum that's why I say the j-pouch is not a cure. And check up are needed every 3 years. The illeostomy removes the entire colon so in fact you are cutting out the entire disease.

Viking, I was 32 when all this happened and originally I was diagnosed with undetermined colitis. So I was going to get the j-pouch but then undetermined was determined to be crohn's. Crohn's patients are advised against the j-pouch.

Like I said earlier I know many people who are living successfully with the j-pouch. I do volunteer work with my doctors and I have met many inspiring people along the way. For those who have difficulty with it they have it disconnnectect and revert back to the ostomy.

My only suggestion is make sure you go to a good surgeon. Are you located in the midwest? I know some great doctors out here.

Nupur I do not know of anyone in India-I am so sorry.

Erica
Erica
Crohn's and Ostomy in 2004


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 3/22/2008 11:39 AM (GMT -7)   

Nurpur,

I believe my GI doctor is from India.  Where abouts do you live in India?  I will call and ask him this week if he has any recommendations.

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


ME!
Regular Member


Date Joined Aug 2007
Total Posts : 185
   Posted 3/22/2008 1:40 PM (GMT -7)   
I had my colon taken out Oct 07. I feel great now in that regards. Pain free and eat whatever I want and go to the bathroom 'normally'.

My surgeon reconnected everything back to my rectum so I don't have a pouch, J pouch or otherwise. You'd never know I had anything wrong with me. Just a small 3 inch scar below my bikini line.

The surgery was the hardest thing I've ever done....but being on the otherside of it I would definitely do it again.

Just do a lot of research and get all the facts you can. It will help you know what to expect. Good luck! Kim
Control is an illusion. The only control we have is our response to people and situations. - Kim Martin


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 3/22/2008 1:49 PM (GMT -7)   
Kim, why did you have your colon removed? I'd love it if I could get everything just connected to the rectum!

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/22/2008 8:35 PM (GMT -7)   
you will be much happier without all that sickness inside of you! and if you do decide on a perm illeo, it's notbad at all, and it's actually kind of convenient at times, lol.

viking99
New Member


Date Joined Nov 2007
Total Posts : 13
   Posted 3/22/2008 9:25 PM (GMT -7)   
thanks for all the help.

Post Edited (viking99) : 3/23/2008 5:59:49 PM (GMT-6)


Rytm09
New Member


Date Joined Feb 2008
Total Posts : 16
   Posted 3/24/2008 3:58 AM (GMT -7)   
Hi Peggy,

Thanks for the concern.We live in central India.Actually going to any part of India for the treatment is not at all a problem for us because we have our friends and relatives in almost every metro city of India.

Only thing is we are really unaware that in which hospital shud we go and have this surgery.It wud be great if u can ask ur GI
doctor about the hospitals/doctors in India which specializes in these surgeries infact the best place to have this all done!

Thanks in advance..

Nupur

Rytm09
New Member


Date Joined Feb 2008
Total Posts : 16
   Posted 3/24/2008 4:05 AM (GMT -7)   
Hi Eva,

Agree to ur decision of having perm Ileostomy.After having researched a lot..I think that in my dad's case also perm Ileostomy would be a better option.Moreover since he is also diabetic,healing will take some more time...in this case its better not to opt for a 2 part surgery.

What's ur take on this??

appreciate ur suggestions...

Wish u best of ur health and early recovery..

Thanks in advance..
Nupur

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 3/24/2008 6:00 AM (GMT -7)   
I really don't know how to advise you, Nupur- what you say seems to make sense though! Best of luck to you & your family also- I hope you are able to find a good surgeon ASAP! Have you looked on the internet much to research surgeons/hospitals in india?
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 3/25/2008 6:46 PM (GMT -7)   

Nupur,

I called my GI and spoke with him about hospitals/surgeons he might have knowledge of in India.  He is originally from there, but has been in the States so long that he really can't recommend any specifics.  I am sorry that I haven't been able to help you with your search. 

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 

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