Total Colon removal but NO colon Cancer

Queent
Queent Member Posts: 5
in Colorectal Cancer #1
I am writing here because I can't seem to find another board to discuss my situation.
I first off will say, I do NOT have colon cancer or any other cancer. Praises.
My colon doesn't work. And has never worked. I've been dealing with laxatives since I was 21. I'm now 43. So I can't go to the bathroom at all, unless I use 10+ laxatives at a time.
So my life has been terrible. I have to plan my life around when I will use the bathroom for hours/days at a time.
Can you imagine eating during the week and then emptying on the weekends? it's been really rough.
I've dealt with this so much it's insane. The pain, the cramping the mood swings. it's been too much. I finally found a surgeon who is willing to offer a solution. Believe me, I've tried every diet, every drink, every pill, every medicine to help and had zero relief. Now the dr figures I was born this way.
My colon is suppose to be around 5 feet long but it's stretched to what the dr believes around 10 feet long...so he is going to remove the entire colon on Oct 23rd and connect my small intestines to my rectum.
I am finding little information on this procedure. Does anyone know anything about this?
He claims he done this 1000's of time and mostly women. I've had the 2nd opinion and this dr agrees this is the best option to live a healthy life.
Thank you for any information you can give.

Comments

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #2
    Hi
    It sounds as if your surgeon is talking about making what is called a J-pouch.

    If that is the case, you might want to check out the following web site for more details:

    http://www.j-pouch.org/Whatis.html

    If this is the procedure you need to understand the process and what to expect afterwards.

    If you find out from your surgeon that your procedure is called something else, let us know and we might be able to help.

    Wishing you well with the procedure and a healthy life.

    Marie who loves kitties
  • Queent
    Queent Member Posts: 5
    #3
    Lovekitties said:

    Hi
    It sounds as if your surgeon is talking about making what is called a J-pouch.

    If that is the case, you might want to check out the following web site for more details:

    http://www.j-pouch.org/Whatis.html

    If this is the procedure you need to understand the process and what to expect afterwards.

    If you find out from your surgeon that your procedure is called something else, let us know and we might be able to help.

    Wishing you well with the procedure and a healthy life.

    Marie who loves kitties

    Thank you Marie...I will
    Thank you Marie...I will check out that site.
    Best wishes:)
  • John23
    John23 Member Posts: 2,122 Member
    #4
    Queent -
    Re:
    "My colon is suppose to be around 5 feet long but it's stretched
    to what the dr believes around 10 feet long...so he is going to
    remove the entire colon on Oct 23rd and connect my small
    intestines to my rectum."

    Say what? Rather than resect 4 or 5 feet of the possible 10 foot
    they say you have of colon, they're going to take the entire colon out?

    Do they drink a lot of alcohol prior to seeing their patients, or
    is it possible they've changed meds and it's affecting their minds?

    Anyone with an Ileostomy will tell you that the output is watery
    24/7/365. At very best? thick gravy. The Ileocecal valve is part
    of the colon; remove the colon and that valve is one more thing
    that regulates output that you'll be without. You might want to invest
    in a few caes of "Depends".. Or a porta-potti to keep in the car.

    You should run, not walk, to another colorectal surgeon that's
    not of the same group or organization as your present one, and
    get another more realistic opinion.

    And before getting any radical surgery to "fix" a problem that
    may be able to be resolved in a more natural way..... You might
    want to seek some advice from a practitioner of.... what do they
    call it?? Oh yeah, Traditional Chinese Medicine.

    I do not have a colon, and have had more than 1/2 my small
    intestine disconnected. I have two stomas to maintain, both
    from my small intestine.. My digestion was near nil, since a short
    bowel can not absorb much of anything.

    My TCM doc provided some herbs to resolve the condition,
    and within weeks my absorption rate was increased; so well in fact,
    that my blood tests are coming back almost as if I never had
    anything removed.

    But if you love western medicine and prefer to stick with it,
    that's fine, but do get other opinions regarding any removal of
    any body parts; It's kinda' difficult to get replacements, ya'know?

    It seems awfully senseless to remove an organ, only to try and
    manufacture it again out of another organ... You don't need
    a specially fashioned colon replacement, when you already have
    a working colon.

    There -are- better solutions; you just have to go look for them.

    Also... try the UOAA Forum for input; they're a good bunch of
    people that can tell you all about intestinal problems and resolves.

    Best of health to you,

    John
  • Coppercent
    Coppercent Member Posts: 158
    #5
    Sounds like you have been
    Sounds like you have been through a lot. My heart goes out to you. I have read about several people on these blogs that have had their whole colon removed and are doing just fine. To get more specific answers for yourself you may want to find out how your physician plans to reconnect you but honestly I don't really know if in the end that there is any difference. Marie is probably on target with the J-pouch that seems to be pretty common. John also had a good idea about the ostomy site. I am not saying you will ever need an ostomy but many of these folks have had temporary ostomies while healing and have had parts or all of their colon removed. Although ostomies are not always required. Please remember to read through people's opinions/experiences. We only know what we experienced and what is best for ourselves. Our bodies are all different. An example is the comment that all people with ileostomies only have a liquid or gravy like out put. I had an ostomy for 11 months and the majority of my output was the consistency of a thick peanut butter. My waste had to be squeezed out of the bag like squeezing tooth paste. You will find a lot of people have what they call "pancacking" due to the thick output. Sure there were times I had diarhea and it was liquid but when I ate a healthy balanced diet I got the "peanut butter". I have now had my reversal and am getting along pretty well and I know it will get better. I only mention this because you will find a lot of negative comments. When I was researching trying to decide on my reversal someone made the comment that they would rather have their ostomy then wear "depends". Like it was an either or situation which I have found is definitely not the case. I don't have an ostomy and i don't need depends. Keep positive. Choose a surgeon you have confidence in then go with your gut instincts. It really sounds like you have been through more rough times then any one person deserves. Best of luck to you!
  • Queent
    Queent Member Posts: 5
    #6
    John23 said:

    Queent -
    Re:
    "My colon is suppose to be around 5 feet long but it's stretched
    to what the dr believes around 10 feet long...so he is going to
    remove the entire colon on Oct 23rd and connect my small
    intestines to my rectum."

    Say what? Rather than resect 4 or 5 feet of the possible 10 foot
    they say you have of colon, they're going to take the entire colon out?

    Do they drink a lot of alcohol prior to seeing their patients, or
    is it possible they've changed meds and it's affecting their minds?

    Anyone with an Ileostomy will tell you that the output is watery
    24/7/365. At very best? thick gravy. The Ileocecal valve is part
    of the colon; remove the colon and that valve is one more thing
    that regulates output that you'll be without. You might want to invest
    in a few caes of "Depends".. Or a porta-potti to keep in the car.

    You should run, not walk, to another colorectal surgeon that's
    not of the same group or organization as your present one, and
    get another more realistic opinion.

    And before getting any radical surgery to "fix" a problem that
    may be able to be resolved in a more natural way..... You might
    want to seek some advice from a practitioner of.... what do they
    call it?? Oh yeah, Traditional Chinese Medicine.

    I do not have a colon, and have had more than 1/2 my small
    intestine disconnected. I have two stomas to maintain, both
    from my small intestine.. My digestion was near nil, since a short
    bowel can not absorb much of anything.

    My TCM doc provided some herbs to resolve the condition,
    and within weeks my absorption rate was increased; so well in fact,
    that my blood tests are coming back almost as if I never had
    anything removed.

    But if you love western medicine and prefer to stick with it,
    that's fine, but do get other opinions regarding any removal of
    any body parts; It's kinda' difficult to get replacements, ya'know?

    It seems awfully senseless to remove an organ, only to try and
    manufacture it again out of another organ... You don't need
    a specially fashioned colon replacement, when you already have
    a working colon.

    There -are- better solutions; you just have to go look for them.

    Also... try the UOAA Forum for input; they're a good bunch of
    people that can tell you all about intestinal problems and resolves.

    Best of health to you,

    John

    Thanks John.....my colon
    Thanks John.....my colon doesn't work...that's the problem....that is why both the surgeons agreed it needs to come out...because of all the laxitives I'm having to take just to go to the bathroom at all.
    I'm so torn...because right now I have 100% constipation and now I'm hearing I will have 100% gravy as you put it....oh boy.....
  • Queent
    Queent Member Posts: 5
    #7
    Coppercent said:

    Sounds like you have been
    Sounds like you have been through a lot. My heart goes out to you. I have read about several people on these blogs that have had their whole colon removed and are doing just fine. To get more specific answers for yourself you may want to find out how your physician plans to reconnect you but honestly I don't really know if in the end that there is any difference. Marie is probably on target with the J-pouch that seems to be pretty common. John also had a good idea about the ostomy site. I am not saying you will ever need an ostomy but many of these folks have had temporary ostomies while healing and have had parts or all of their colon removed. Although ostomies are not always required. Please remember to read through people's opinions/experiences. We only know what we experienced and what is best for ourselves. Our bodies are all different. An example is the comment that all people with ileostomies only have a liquid or gravy like out put. I had an ostomy for 11 months and the majority of my output was the consistency of a thick peanut butter. My waste had to be squeezed out of the bag like squeezing tooth paste. You will find a lot of people have what they call "pancacking" due to the thick output. Sure there were times I had diarhea and it was liquid but when I ate a healthy balanced diet I got the "peanut butter". I have now had my reversal and am getting along pretty well and I know it will get better. I only mention this because you will find a lot of negative comments. When I was researching trying to decide on my reversal someone made the comment that they would rather have their ostomy then wear "depends". Like it was an either or situation which I have found is definitely not the case. I don't have an ostomy and i don't need depends. Keep positive. Choose a surgeon you have confidence in then go with your gut instincts. It really sounds like you have been through more rough times then any one person deserves. Best of luck to you!

    Thank you so much....I'm
    Thank you so much....I'm doing alot of praying right now...because I've been thru alot...and my son is now 16 and pain is all he's ever seen mom in. I can't do anything fun on the weekends because of having to be near a bathroom due to the box of laxitives I would take.
    Some would say why not take them during the week. Well I have a job that requires me to be on the job..not in the restroom for hours at a time.
    So I think that I will go ahead and get this done. Pray for the best of health and do what I can to maintain a wonderful life. I wish all of you a wonderful recovery as well and may your life be happy
  • k44454445
    k44454445 Member Posts: 494
    #8
    i suggest
    contacting indiana university/methodist hospital in indianapolis indiana. they do alot with colon problems. a couple years ago they did the first in the world colon transplant. one of my patients was at deaths door. he weighed under 100 lbs & was totally disabled. he had his surg & is now in perfect health. weighs 185 & works every day! you could prob do a phone conference. hope this helps
    hugs & prayers
    judy

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