Total colectomy-- anyone??

neeliec
neeliec Member Posts: 106
edited March 2014 in Colorectal Cancer #1
Hi all, I've been AWOL for a while but reading posts regularly. So sorry about Judy :( Hate to even ask about myself after knowing we all are grieving her loss but I need your help.

I saw my colorectal surgeon today-- bad news-- he wants to do a total colectomy Thursday the 28th because he found more cancer in the colon-- after a hemicolectomy last March revealed an apple core cancerous tumor and 21 lymph nodes with cancer. I've undergone 8 cycles of oxaliplatin and FU. This cancer is non-differentiated and may also show lymph node involvement, the dr. says.

Anyone here has had a total colectomy? -- Can you share? How did it change your life? What do you eat now? How about BMs? Any info would be greatly appreciated.
thanks,and blessings,

neelieC

Comments

  • kickerrn
    kickerrn Member Posts: 22 Member
    #2
    neelieC
    I had a total colectomy and removal of my rectum so I am in a different boat than you because it sounds like you will keep your rectum. However both my kids have had a total colectomy and j-pouch formation. They had their surgeries last summer and are doing great. It really didn't change their lives a whole lot. They both have about 5 bm's a day- usually none in the night. They can eat what they want but they have to chew well. Also things really high in suger can increase their bm's. My son is very active in sports with no problems. It is a joke in our house that their dad is the one that isn't normal becasue he still has a colon. lol. Hope that answers some questions. Take Care
    Barb
  • HowardJ
    HowardJ Member Posts: 474
    #3
    See messages a few pages back from rthornton. Looks like he's also a total.
  • jana11
    jana11 Member Posts: 705
    #4
    HowardJ said:

    See messages a few pages back from rthornton. Looks like he's also a total.

    Yep, Rodney got a total colectomy just recently. Email him... very nice guy. j
  • rthornton
    rthornton Member Posts: 346 Member
    #5
    jana11 said:

    Yep, Rodney got a total colectomy just recently. Email him... very nice guy. j

    Yes Jana is absolutely correct. I am a nice guy. And the part about the total colectomy is true, too.

    It seems unusual to have had this procedure. I have run into many partial colectomies, and colostomies, but not so many total colectomies.

    I had mine done on May 23. I guess like with any surgery, there is a period of recovery that is unpleasant. What my surgeon did not mention is that the body produces bile salts which are normally handled by the colon. Without the colon these bile salts pass right thru, and they can feel rather hot (painful) as they pass thru. My father has also had his colon removed, and a coworker of my roommate, and they also report having much discomfort with bathroom trips post surgery. It is something that should go away in time as your body adjusts to the change.

    After surgery they will put you on a low residue (low fiber) diet for a few weeks. As you heal, you should be given the green light to eat as you did before the surgery. After about two weeks or so, I was eating exactly as I did pre-colectomy. Digestion is better for me. My colon always gave me problems.

    Bathroom trips ... expect to experience a lot of diarrhea after surgery. I think it is highly unlikely that people with colectomies ever have a "normal" bathroom life after surgery. You will go several times per day, but again ... your body should adjust and the number of bathroom trips per day will decrease. Anti diarrheal pills, fiber supplements when you are allowed to resume a regular diet (Metamucil is by far the best), and eating lots of cornmeal (or "grits" if you live in the South) will slow down the passage of food through your new digestive system, and will also make things pass better.

    One thing to keep in mind ... I recently developed an anal fissure. My surgeon thinks this is from oceans of chemo-induced diarrhea and maybe also diarrhea from the surgery. So, you want to take plenty of medicine to keep from developing an anal fissure (which can also be caused by constipation, so try to stay somewhere in the middle). Anal fissures are horrible. If you do ever develop one, a medicine called Proctofoam HC has helped me tremendously.

    I hope that I have answered any questions. I am up in the middle of the night because I just got released from the hospital yesterday and went to bed at about 7 last night. So, I'm not all "here" really. If you have any other questions, please email me and I will answer as best as I can.

    I wish you the best of luck. Honestly, the colectomy should not be too difficult and should not, by itself, change life very dramatically. I prefer my current digestive system to what I had before!

    Rodney
  • neeliec
    neeliec Member Posts: 106
    #6
    rthornton said:

    Yes Jana is absolutely correct. I am a nice guy. And the part about the total colectomy is true, too.

    It seems unusual to have had this procedure. I have run into many partial colectomies, and colostomies, but not so many total colectomies.

    I had mine done on May 23. I guess like with any surgery, there is a period of recovery that is unpleasant. What my surgeon did not mention is that the body produces bile salts which are normally handled by the colon. Without the colon these bile salts pass right thru, and they can feel rather hot (painful) as they pass thru. My father has also had his colon removed, and a coworker of my roommate, and they also report having much discomfort with bathroom trips post surgery. It is something that should go away in time as your body adjusts to the change.

    After surgery they will put you on a low residue (low fiber) diet for a few weeks. As you heal, you should be given the green light to eat as you did before the surgery. After about two weeks or so, I was eating exactly as I did pre-colectomy. Digestion is better for me. My colon always gave me problems.

    Bathroom trips ... expect to experience a lot of diarrhea after surgery. I think it is highly unlikely that people with colectomies ever have a "normal" bathroom life after surgery. You will go several times per day, but again ... your body should adjust and the number of bathroom trips per day will decrease. Anti diarrheal pills, fiber supplements when you are allowed to resume a regular diet (Metamucil is by far the best), and eating lots of cornmeal (or "grits" if you live in the South) will slow down the passage of food through your new digestive system, and will also make things pass better.

    One thing to keep in mind ... I recently developed an anal fissure. My surgeon thinks this is from oceans of chemo-induced diarrhea and maybe also diarrhea from the surgery. So, you want to take plenty of medicine to keep from developing an anal fissure (which can also be caused by constipation, so try to stay somewhere in the middle). Anal fissures are horrible. If you do ever develop one, a medicine called Proctofoam HC has helped me tremendously.

    I hope that I have answered any questions. I am up in the middle of the night because I just got released from the hospital yesterday and went to bed at about 7 last night. So, I'm not all "here" really. If you have any other questions, please email me and I will answer as best as I can.

    I wish you the best of luck. Honestly, the colectomy should not be too difficult and should not, by itself, change life very dramatically. I prefer my current digestive system to what I had before!

    Rodney

    Thanks for the response, Rodney. I will probably need more help later-- Stay posted. Hope you have a good recovery. Why are you just getting out of the hospital if your surgery was May 23??
  • neeliec
    neeliec Member Posts: 106
    #7
    kickerrn said:

    neelieC
    I had a total colectomy and removal of my rectum so I am in a different boat than you because it sounds like you will keep your rectum. However both my kids have had a total colectomy and j-pouch formation. They had their surgeries last summer and are doing great. It really didn't change their lives a whole lot. They both have about 5 bm's a day- usually none in the night. They can eat what they want but they have to chew well. Also things really high in suger can increase their bm's. My son is very active in sports with no problems. It is a joke in our house that their dad is the one that isn't normal becasue he still has a colon. lol. Hope that answers some questions. Take Care
    Barb

    What'S A J pouch formation?
    Thanks for your response. Hope all continues well with you and sons. blessings, neelieC
  • kickerrn
    kickerrn Member Posts: 22 Member
    #8
    neeliec said:

    What'S A J pouch formation?
    Thanks for your response. Hope all continues well with you and sons. blessings, neelieC

    A j-pouch is when they take the last bit of the small intestine and make a pouch out of it & connect it ot the rectum. It acts like a resovior for the stool. Barb :)
  • rthornton
    rthornton Member Posts: 346 Member
    #9
    neeliec said:

    Thanks for the response, Rodney. I will probably need more help later-- Stay posted. Hope you have a good recovery. Why are you just getting out of the hospital if your surgery was May 23??

    I got out of the hospital, from my colectomy, after five days. I got out of the hospital yesterday after a chemo infusion. For a number of reasons, I have to do chemo infusions as an admitted patient to the hospital.

    Feel free to email any other questions. I am glad to help.

    Rodney

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