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Thread: Colectomy Advice

  1. #1

    Default Colectomy Advice

    Hi! I hope I am posting in an appropriate place. .
    I am a 20y.o. male who has had a left orchiectomy to remove testicular cancer. As part of my adjuvant treatment I've elected to have lymph node removal surgery. It's gets better, because I ALSO have ulcerative colitis. :-) soooo, I'll have my colon removed with my lymph nodes. They will construct an ileal J pouch, but for the first 3 months I will have an ostomy bag :-/
    Has anyone else had a colectomy? I'm a bit nervous. . Will I be incontinent at any point? Will this affect how I wear diapers for fun? (Messing isn't exactly fun for most :/)
    Please share your stories :-)

  2. #2

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    Hi WoofDOG,

    I am afraid that I cannot advise regarding to the colectomy, but I just wanted to come along and give you my best wishes, support and respect for having to go through so much, without seeming to be phased at all.

    So mucho respect and lots of (((((squishy hugs))))) go out to you.

  3. #3

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    Lol thank you! :-)
    Are you full-time IC? If so, would you recommend pull ups or briefs for controlling containment and urges?
    I can expect some oozing during the first three ostomy months, but once they remove that and open up my new bowel for regular "traffic," I can expect super loose stools up to 20 times a day with sudden urges..

  4. #4

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    Quote Originally Posted by WoofD0G View Post
    Lol thank you! :-)
    Are you full-time IC? If so, would you recommend pull ups or briefs for controlling containment and urges?
    I can expect some oozing during the first three ostomy months, but once they remove that and open up my new bowel for regular "traffic," I can expect super loose stools up to 20 times a day with sudden urges..
    Eeeek! Yes I am full-time IC. I currently use Tena Comfort Super but WHEN they FINALLY get round to my continence assessment, I will be being changed over to Fecal Pads, of which I currently know NOTHING about as I have only had fecal difficulties for the last 12 months.

    I am guessing that pull ups would be better, but I don't know what an ostomy is...

    The only problem I can foresee with pullups would be how easy they are to remove once soiled, but I guess if they have tearable sides like the pullups my children used to wear, then I guess that is OK.

    If your stools will be frequent and loose, then I'm guessing a specific fecal pad/diaper would be better.

    My Continence Supplies advisor stated the difference between wearing urinary pads and fecal pads are that the entire urinary pad is changed 3 times a day (their maximum allowed number of changes for free nhs prescription stock) whereas the fecal pad is worn one per day, (unless it gets heavily soiled) but numerous inserts (don't know if there's a maximum allowed) are used throughout the course of the day...

    I have NO idea if Tena do fecal pads, it is not something I have looked into as yet.

    If you need any further info, or my input simply doesn't answer your question, just shout and I'm sure SOMEONE will be along soon to help you.

    Are you new here, or just new to the IC side of ADISC?

  5. #5

    Default



    Quote Originally Posted by WoofD0G View Post
    Hi! I hope I am posting in an appropriate place. .
    I am a 20y.o. male who has had a left orchiectomy to remove testicular cancer. As part of my adjuvant treatment I've elected to have lymph node removal surgery. It's gets better, because I ALSO have ulcerative colitis. :-) soooo, I'll have my colon removed with my lymph nodes. They will construct an ileal J pouch, but for the first 3 months I will have an ostomy bag :-/
    Has anyone else had a colectomy? I'm a bit nervous. . Will I be incontinent at any point? Will this affect how I wear diapers for fun? (Messing isn't exactly fun for most :/)
    Please share your stories :-)
    I once had a friend who had a colectomy, she wore the bag for a few months, it's so that the colon can heal without risk of infection. Feces has a lot of bacteria so if it's present in the healing process, you would get an infection. I never asked if she had problems controlling, nor have I talked to her in years. You should talk to the doctor and ask about the risks and get all they information out of him/her that you can.

  6. #6

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    Hi I had the exact same surgery a few years ago. With the ostomy you will not actually be incontinent however you have no control aver when the ostomy goes to the bathroom. I have what is called FAP( familial adenomatous polyposis. I had my original colectomy done when I was 18. The first time they just did a partial and things went bad. That is why I recommend going straight for the J-pouch. I did not need my diapers while I had my ostomy so I can not really advise on that area. I have been ostomy free since 2007 after having it for about 2 years. It was rough in ways. I would imagine that it would be hard to wear diapers with the ostomy. It would be very hard to keep the bag on with the diaper in the way. If you would like to talk more about the surgery and stuff feel free to PM me. I would say more but it is not something that I want the entire world to hear about.



    Quote Originally Posted by WoofD0G View Post
    Hi! I hope I am posting in an appropriate place. .
    I am a 20y.o. male who has had a left orchiectomy to remove testicular cancer. As part of my adjuvant treatment I've elected to have lymph node removal surgery. It's gets better, because I ALSO have ulcerative colitis. :-) soooo, I'll have my colon removed with my lymph nodes. They will construct an ileal J pouch, but for the first 3 months I will have an ostomy bag :-/
    Has anyone else had a colectomy? I'm a bit nervous. . Will I be incontinent at any point? Will this affect how I wear diapers for fun? (Messing isn't exactly fun for most :/)
    Please share your stories :-)

  7. #7

    Default



    Quote Originally Posted by binkygirl View Post
    Hi I had the exact same surgery a few years ago. With the ostomy you will not actually be incontinent however you have no control aver when the ostomy goes to the bathroom. I have what is called FAP( familial adenomatous polyposis. I had my original colectomy done when I was 18. The first time they just did a partial and things went bad. That is why I recommend going straight for the J-pouch. I did not need my diapers while I had my ostomy so I can not really advise on that area. I have been ostomy free since 2007 after having it for about 2 years. It was rough in ways. I would imagine that it would be hard to wear diapers with the ostomy. It would be very hard to keep the bag on with the diaper in the way. If you would like to talk more about the surgery and stuff feel free to PM me. I would say more but it is not something that I want the entire world to hear about.
    Yeah, I'll have the J pouch. I will be emailing my colorectal surgeon with a list of questions, many of which are incontinence related... and I will PM asap once I "level up" I would LOVE to know what to expect. . . My gf knows about my fetish but also about the real potential of a somewhat messy summer and she reassures me that she will support me any way she can.
    But i agree, even on an ABDL site, this isnt the most charming discussion to have publicly

  8. #8

    Default

    i sent you a PM


    Quote Originally Posted by WoofD0G View Post
    Yeah, I'll have the J pouch. I will be emailing my colorectal surgeon with a list of questions, many of which are incontinence related... and I will PM asap once I "level up" I would LOVE to know what to expect. . . My gf knows about my fetish but also about the real potential of a somewhat messy summer and she reassures me that she will support me any way she can.
    But i agree, even on an ABDL site, this isnt the most charming discussion to have publicly

  9. #9

    Default

    For what it's worth, my daughter in law's father also had a colectomy, and I believe he too had a j-bag for about three months until his colon had healed from the surgery. They had to remove a section. After they reattached, he returned to a normal life. He is not incontinent. Obviously you wouldn't want to wear diapers during that three month period, but once your colon is reattached, you should be back the way you were before the cancer. Of course, ask these questions to your surgeon as he has a lot more information.

    Like Captain Vines said, many hugs. You are so young to be going through this.

  10. #10

    Default

    Thanks you guys :-) yeah, it can be tough going through so many surgeries at 20 years old, but I've got the support of my family, girlfriend, church, and online community as well. :-)
    I'm tempted to start a blog/diary thing to document my summer periodically while I go through this operation and recover from it... but I'd need to read up on how blogs work on this site.

    Just for clarification, they will cut me wide open, remove my ENTIRE large intestine, and bring my small intestine down and connect it to my rectum. While that heals for 3 months, I will have the upper section of my small intestine diverted to a hole in my abdomen which (nasty part) will ooze waste into an ostomy pouch attached to my tummy. This keeps poop from going south and contaminating my newly attached "J-pouch" above my rectum. After the 3 months, my new "colon" will be healed. I can lose the tummy poop bag and start droppin deuces like anyone else. However, the first weeks will be rough. I'll have watery stools forever, and I'll have to relearn how to hold my waste all over again :-\ if my surgery is in June, then things might get messy around August/September..

    .....yeah, this is a lot of info. I could blog it if anyone might read it.

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