Subtotal Colectomy

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info-please
New Member


Date Joined Feb 2009
Total Posts : 5
   Posted 2/6/2009 7:53 AM (GMT -6)   
I was just told I need a subtotal colectomy (75% of my colon removed) The surgery will be done laparoscopy.  Mine is due to polyps (if colon not removed I have a very high risk of colon cancer). I would llike to know how it has affected your lives, know everyone is different but any information on what I can expect will be greatly appreciated.
I was told I will be going to the bathroom anywhere from 4 to 7 times a day. I am so worried about this and would like to know how comfortable you are about going out or traveling? Do you have any control?
Any info will be helpful.......Please......

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/6/2009 8:20 AM (GMT -6)   
If you have FAP you might want to visit www.j-pouch.org as there are many FAP members there. There is also a FAP support group on Yahoo but I don't have the link. Your surgery is different than mine; I have a total proctocolectomy with a jpouch. My freqeuncy is higher than yours but it doesn't interfere with my life. I am a long distance hiker (100-200 miles), backpacker, and traveler. Since surgery I have hiked 200 miles across England, 100 miles through both Scotland and Ireland, hiked Patagonia, hiked Turkey, the Grand Canyon, backpacked in the Sierras, hiked 80 miles of the John Muir trail, and traveled though Dubai and Abu Dhabi. Surgery has given me the opportunity to stay active. I have total control; my plumbing works just like it did with a colon and rectum the only difference is the increased frequency.

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


info-please
New Member


Date Joined Feb 2009
Total Posts : 5
   Posted 2/6/2009 8:24 AM (GMT -6)   
Thanks sue appreciate your help.............

emr60
New Member


Date Joined Feb 2009
Total Posts : 1
   Posted 2/25/2009 5:38 PM (GMT -6)   
I have had a sub-total colectomy which means all of my colon removed except the connection to my lower intestine.  I would not recommend this to anyone unless cancer is present.  I had it done over 2yrs ago and I would rather have taken my chances on bleeding to death.  Explore every option available.  Get many opinions.  I am truly sorry I had it done, knowing what I know now.  I go to the bathroom minimum of 10x a day.  Everything I eat or drink, goes right through and mostly I am soo sore that sometimes it hurts to walk.  I have cuts and sores all over my rectum and am worried about nutrients staying in my system which can lead to other serious illnesses.  My advic don't do it unless it is an emergency and I still would get at least 3 or 4 opinions.  I hope I'm not too late in answering you, I just found this website.
Good Luck!
Ellis

ucRick
Regular Member


Date Joined Jun 2007
Total Posts : 75
   Posted 2/26/2009 4:06 PM (GMT -6)   
I had a sub-total colectomy with ileo-rectal anastomosis in September of 2007 and they removed about 85% of my colon, leaving the rectum and a couple of inches of the bottom of the sigmoid colon. At the time it was very hard to decide on the surgery as I was given 3 options by the surgeons and I struggled with even having the surgery because it was because high-grade dysplasia was found in one of the biopsies from my ascending colon, which is pre-cancerous but not yet cancer. I'm glad I did because cancer was found after the colon was removed in one of the biopsies from the same part of the colon where the dysplasia was found. It was very early stage and had not begun to spread yet so I didn't have to undergo chemo or radiation therapy! Even though my cancer developed from long-term colitis I was almost symptom-free as long as I stayed on the meds.
The surgery is a big operation and I was off work for about 6 weeks recovering but I am glad that I had the surgery when I did. Your recovery might be shorter if it's done laparoscopically and I had some short-term complications which included an ileus(blockage) that resolve on its own about 12 days after the surgery. There are changes in my bm's and frequency is a big part of it. I average about 4 bm's per day and I try to be careful with my diet but I do "cheat" occasionally. The consistency of the stools is not completely formed but I have found that it helps me to take metamucil in water every morning and sometimes in the evenings, too. My short-term recovery was tough but my surgeon didn't do this particular surgery laparoscopically so mine was with an open vertical incision about 9"-10" down the middle of my abdomen. But long-term, things haven't been too hard for me. I've travelled quite a bit and taken volunteer trips to Mexico for a week in 2008 and Uganda in January of 2009 and didn't get sick and was able to extend time between bm's to as much as 16 hours when I needed to.
I'm not trying to say the surgery is trivial, it's not. You have to adjust to a new normal when it comes to digestion and bm frequency and consistency. I'm on a low fiber diet and have to avoid raw veggies, especially tossed salads and cole slaw. Carbonated soft drinks can also be tough because of the co2 gas but I even have one of those every now and then. But there can be life after a colectomy.
55 yr old male, UC since 1978
800mg Asacol x 3 daily
500 mg Pentasa x 4 daily
Multivitamin
Boniva(for osteoporosis)
600mg calcium + 200 iu Vit. D x 3 daily
Advicor(for cholesterol)

Sub-total colectomy with ileo-rectal anastomosis 9/5/2007

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