Complete Colon Removal?

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Comments

  • northernlites
    northernlites Member Posts: 96
    #22
    Hi Carrieh,
    I was diagnosed
    Hi Carrieh,
    I was diagnosed last May with colon cancer found through colonoscopy. Before my surgery my dr decided to do a genetic test and was found that I had lynch syndrome. He said my chances of getting a recurrance was 85% along with other cancers. I opted to have all of my colon removed. I get check every three months for cea levels and other imaging tests every 6 months. I will say it has taken me a year to feel somewhat "normal" again. After surgery I was going to the bathroom 15 to 20 times a day...loose stools... but now I go about 3 or 4 on a bad day. I do get dehydrated if I don't keep fluids around continually. I have a natropath dr as well that helps me with the dehydration and mineral levels in my body...many herbal medicines have helped with this. I went back to work a few months after my surgery and still working full time.... so you can do this,stay positive and keep a good support group around you.

    Tessa
  • Motocat
    Motocat Member Posts: 1
    #23
    I had this same procedure done last year.
    My colonoscopy revealed 2 tumors (not related, grew independently) 9 polyps 3 of which had cancer in situ. At age 60 my Dr advised I have the complete colon removed as I am a polyp maker. My doctor later had me tested for Lynch syndrome--don't have it. No family history either. I felt like I had won the lottery when told I could have the procedure that attached the anal canal to the small intestine.

    Had surgery May of 2011. In hospital 6 days. No complications. (Ask for the spinal block--much less discomfort.) Had 6 weeks where I had to eat a low residue diet--boring but OK. Was going to the bathroom 4-5 times a day--you can learn your timing by when you eat. Keep moist cleaners and Tucks in all your bathrooms. Can get a little sore. Was a little hesitant to go out for long periods till this stabilized. Now go 2-3 times a day and have a fairly predictable schedule. Not a problem at all. Eat anything I want but some foods don't break down well which will add an additional trip to the bathroom. Do everything I always have and though it changes the contours of your stomach it is not unattractive if you discount the scar.

    I had no mets and so far scans are clear and blood work normal. I will have to have a flex symogography every year forever. I turned down preventive chemo based on my prior experience w/lung cancer of which I am a 13 year survivor. Having a lung removed was much worse and has long term consequences I won't go into now.
  • northernlites
    northernlites Member Posts: 96
    #24
    Motocat said:

    I had this same procedure done last year.
    My colonoscopy revealed 2 tumors (not related, grew independently) 9 polyps 3 of which had cancer in situ. At age 60 my Dr advised I have the complete colon removed as I am a polyp maker. My doctor later had me tested for Lynch syndrome--don't have it. No family history either. I felt like I had won the lottery when told I could have the procedure that attached the anal canal to the small intestine.

    Had surgery May of 2011. In hospital 6 days. No complications. (Ask for the spinal block--much less discomfort.) Had 6 weeks where I had to eat a low residue diet--boring but OK. Was going to the bathroom 4-5 times a day--you can learn your timing by when you eat. Keep moist cleaners and Tucks in all your bathrooms. Can get a little sore. Was a little hesitant to go out for long periods till this stabilized. Now go 2-3 times a day and have a fairly predictable schedule. Not a problem at all. Eat anything I want but some foods don't break down well which will add an additional trip to the bathroom. Do everything I always have and though it changes the contours of your stomach it is not unattractive if you discount the scar.

    I had no mets and so far scans are clear and blood work normal. I will have to have a flex symogography every year forever. I turned down preventive chemo based on my prior experience w/lung cancer of which I am a 13 year survivor. Having a lung removed was much worse and has long term consequences I won't go into now.

    Hi Motocat,
    very inspiring
    Hi Motocat,
    very inspiring story
  • RickMurtagh
    RickMurtagh Member Posts: 587 Member
    #25
    the thing is
    Carrie,
    It has some time since you posted this and asked for advice, but I have some pretty strong feelings about cancer and the plans we make to combat it.
    I had two large tumors in different sections of colon and lots of polyps. We planned on removing the colon, constructing a jpouch and proceeding with the standard chemo and radiation protocols for treating cancer.
    Everything went along just like we planned for a while. Then all hell broke lose. Well, it felt like hell - burned like hell too.
    To make a long story short, I had to abandon the jpouch and go back to a permanent ileo, I suffer erectile dysfunction and butt leak. This meant losing the last 19 inches or so of small intestine. That section of small intestine absorbes fat soluble vitamins and this results in a compromised ability to absorb needed nutrients.
    I am not complaining - I am alive and happy. It is so important that you are prepared to assume responsibility for all the decisions concerning your treatment. Things don't always work out according to plan. Your quality of life will depend greatly on your ability to accept and live with your decisions right now, regardless of the outcome.
    You are having surgery in just a few days. Think hard about what it is you expect and be prepared to be flexible and live life as best you can with what you got (left).
    peace
    Rick
  • jeanette66
    jeanette66 Member Posts: 1
    #26
    complete bowel removal

    Dear Carrie

    Just joined so sorry to be over a year late you probably have your answer by now but I still wanted to tell you my story here goes.

    I had my large bowel removed and a pouch made out of my small bowel so no bag on out side pouch on inside, now how many times you go to the toilet is different for each person some go 2-3 times others more everyone is different. I also had my rectum removed but still go to the toilet like anyone else I hope this helps.

     

     

     

  • toddi1973
    toddi1973 Member Posts: 41 Member
    #27
    Complete Colon Removal

    Hi Carrie,

    I had this procedure done 2 years ago after being diagnosed with Stage 2 CRC and an unexplained high amount of polyps everywhere over the place. FAP and Lynch tests were negtive, so there was no immediate explanation where these came from other than an old colitis.

    I had a J-Pouch formed by my surgeon and had a temporary ileostomy for 3 months. After take down, it was rough. For about 4 months my toilet was my primary residence.

    However, things started getting much better over the following few months and finally my body had adjusted. I can eat everything and the frequency with the j-pouch is better then it ever was in my pre-cancer ulcerative colitis years.

    Talk to your surgeon if he can form a j-pouch and how many he has done. You want a surgeon to perform this that has a good track-record with j-pouches. 

     

    Best of luck and if you have any other questions, let me know.

     

     Toddi

  • carrieh
    carrieh Member Posts: 146 Member
    #28
    toddi1973 said:

    Complete Colon Removal

    Hi Carrie,

    I had this procedure done 2 years ago after being diagnosed with Stage 2 CRC and an unexplained high amount of polyps everywhere over the place. FAP and Lynch tests were negtive, so there was no immediate explanation where these came from other than an old colitis.

    I had a J-Pouch formed by my surgeon and had a temporary ileostomy for 3 months. After take down, it was rough. For about 4 months my toilet was my primary residence.

    However, things started getting much better over the following few months and finally my body had adjusted. I can eat everything and the frequency with the j-pouch is better then it ever was in my pre-cancer ulcerative colitis years.

    Talk to your surgeon if he can form a j-pouch and how many he has done. You want a surgeon to perform this that has a good track-record with j-pouches. 

     

    Best of luck and if you have any other questions, let me know.

     

     Toddi

    Toddi and Jeanette

    Thanks for sharing...two years later, lots has changed and that surgery isn't even an option for me anymore, but maybe it will help someone else who's trying to find information or not sure what to do. Radiation destroyed much of my small intestine, so now I have a teeny little piece of colon and about 2/3rds of my small intestine...permanant colostomy if you want to call it that. Lots of trouble absorbing nutrients, lots of trips to the bathroom, but just had some medication changed around and doing much better the last couple of months. Just happy to be alive and with the ones I love. Welcome aboard, guys...don't be shy about asking questions or just ranting if you need to. This is a great place for advice, comfort, and hope.

    Carrie

  • geotina
    geotina Member Posts: 2,111 Member
    #29
    Carrie:

    I have heard of this (removal of the entire colon).  You may find more information on the Colon Club or Colon Cancer Alliance.   There must be a reason the doctors want to remove so many organs so make sure you have a thorough understanding.  If you don't make them explain it to you so you understand and don't let them rush you.  That being said I agree with the others, a second opinion is definitely in order. 

     

    Best Wishes - Tina

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