Who has an Ostomy?

Buckwirth
Buckwirth Member Posts: 1,258 Member
edited January 2023 in Colorectal Cancer #1
I've been thinking it might be useful to have a list of those with an ostomy.

If you care to be part of the list, please note the following:

Colostomy or Ileostomy?

Permanent or temporary?

If temporary, have you had the take down surgery?

This would be helpful list to PM to any new member with ostomy questions, and I would store it in my Expressions page, trying to keep it as up to date as possible.

Thanks in advance to all who would like to participate!

Ostomy List

Blake
«13

Comments

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Ileostomy
    Had a temporary ileostomy and takedown surgery in November, 2009. If anyone has any questions, ask away. Always here to help if possible.

    Kim
  • TMac52
    TMac52 Member Posts: 352
    Colostomy
    I have a perm colostomy since 5/10.
    Tom
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Add me to the list
    I have a perm colostomy since March 2010.

    Always glad to help any who have questions about it.

    Marie
  • PamPam2
    PamPam2 Member Posts: 370 Member
    HAD one
    Had colostomy done on emergency basis for around ten months. Also had the "luck" of being one of the 14% that had a prolapse, quit my chemo early to get reversal, my choice.
    Pam
  • karguy
    karguy Member Posts: 1,020 Member
    Colostomy
    Mine is permanant,since july of 2008.
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    karguy said:

    Colostomy
    Mine is permanant,since july of 2008.

    Permanent Colostomy
    July 15th, 2008, at somewhere in between 7 am and 120 pm and it is open to any and all discussion............buzz
  • mommyof2kds
    mommyof2kds Member Posts: 519
    Buzzard said:

    Permanent Colostomy
    July 15th, 2008, at somewhere in between 7 am and 120 pm and it is open to any and all discussion............buzz

    Temp ileostomy in june 09,
    Temp ileostomy in june 09, takedown in sept 09. will to answer any questions. Petrina
  • soccermom13
    soccermom13 Member Posts: 224
    temporary ileostomy Nov 2008
    Take down surgery June 2009. Would be happy to be on your list.
    hugs
    Shanna
  • plh4gail
    plh4gail Member Posts: 1,238 Member
    I had a temporary loop
    I had a temporary loop iliostomy and I've had the take down. I'm here for any questions.

    Gail
  • sherrylee
    sherrylee Member Posts: 19
    plh4gail said:

    I had a temporary loop
    I had a temporary loop iliostomy and I've had the take down. I'm here for any questions.

    Gail

    permanent ileostomy
    I have an ileostomy since october 2006, permanent. I can answer questions too, not a problem.
  • sherrylee
    sherrylee Member Posts: 19
    plh4gail said:

    I had a temporary loop
    I had a temporary loop iliostomy and I've had the take down. I'm here for any questions.

    Gail

    permanent ileostomy
    I have an ileostomy since october 2006, permanent. I can answer questions too, not a problem.
  • TxKayaker
    TxKayaker Member Posts: 176
    sherrylee said:

    permanent ileostomy
    I have an ileostomy since october 2006, permanent. I can answer questions too, not a problem.

    Take down Dec. '09

    Take down Dec. '09
  • flcajun1969
    flcajun1969 Member Posts: 8
    Permanently Changed for life
    I have a permanent Ileostomy. It was given to me at age 37 on 12/21/06.
  • Crow71
    Crow71 Member Posts: 679 Member
    I've had both
    colostomy from 08/09 - 4/10
    ileo from 4/10 to present.
    The ileo was meant to be temporary, but the cancer came back fairly quickly after surgery and I have never had an opportunity to get it reversed. Sometime perhaps.

    I'm always happy to help ostomites. I received a lot of ostomy help from folks here - still do.
    Roger
  • steve g
    steve g Member Posts: 58 Member
    Permanent colostomy
    Happened Nov 4th o8 a date I can't seem to forget, hardly remember anything else but that day sticks with me......Steve
  • Kenny H.
    Kenny H. Member Posts: 502 Member
    steve g said:

    Permanent colostomy
    Happened Nov 4th o8 a date I can't seem to forget, hardly remember anything else but that day sticks with me......Steve

    Colostomy forever.
    Since Sept 2010...Not as bad as i ever thought it was gonna be. Adapted to it well (no choice) can go places now without worries.
  • dianelynn41
    dianelynn41 Member Posts: 71
    Kenny H. said:

    Colostomy forever.
    Since Sept 2010...Not as bad as i ever thought it was gonna be. Adapted to it well (no choice) can go places now without worries.

    Need Info
    Roby just had a colonoscopy and the surgeon said tumor did not shrink as much as he hoped it would. Surgery will be soon and he'll have a permanant colostomy. Roby wants to know what to expect after surgery.
    What is the difference between a colostomy and a ileostomy?

    Diane & Roby
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    Ileostomy
    Ileostomy

    bag off in 7 days or 168 hours. who is counting....
    great idea blake.

    pete
  • John23
    John23 Member Posts: 2,122 Member

    Need Info
    Roby just had a colonoscopy and the surgeon said tumor did not shrink as much as he hoped it would. Surgery will be soon and he'll have a permanant colostomy. Roby wants to know what to expect after surgery.
    What is the difference between a colostomy and a ileostomy?

    Diane & Roby

    Diane & Roby

    Re:
    "What is the difference between a colostomy and a ileostomy?"

    With a Colostomy, they pull a section of Colon out through the abdomen,
    and with an Ileostomy, they pull out a section of the Ileum (small intestine).

    A Colostomy will put mostly solid waste into the pouch (since the
    colon removes water from the waste), while an Ileostomy will put
    mostly liquid waste into the pouch (since that's what it usually
    dumps into the colon).

    When they give you an Ileostomy, the "Ileocecal valve" is usually
    removed, since it is part of the Colon. That valve normally serves
    two purposes: 1. Keeps bacteria from the colon from travelling
    back into the Ileum. 2. Provides another way for the body to regulate
    the amount of waste (speed of discharge) going from the ileum
    into the colon.

    Without that valve, the food product (now waste), travels though
    the body faster, allowing less time for absorption of water and nutrients
    before it's discharged into the pouch.

    If/when the ileum is reconnected to the colon, the speed of the
    transfer of waste is usually faster, creating a more liquid stool
    (as if you have diarrhea).

    An Ileostomy usually presents more of a problem to the owner,
    since the waste is more acidic than the usual output from the colon.

    The colon neutralizes the acid, and puts the liquid back into the
    system, producing dry(er), and somewhat formed stool.

    The Ileo output is uncontrolled, since the normal job for it doesn't
    require preparing it for discharge (bowel movement); it just
    absorbs what it's designed to absorb, and sends the product into
    the colon for finalization ( makes a turd for the worst). (haha)

    Anyway, that's basically the dif.

    If you're anticipating an ostomy, make sure that the surgeon is
    well experienced, and marks out where the best spot -for you- is.

    A poorly placed and/or formed stoma can make life a living hell,
    so be sure it's done right the first time.

    Generally the rules are: 4" to the side of the navel, and 4" below the
    belt line. It should protrude from the body by at least 3/4" to 1"
    to provide what is known as a "spout". That spout allows the discharge
    to properly enter the appliance. A recessed stoma, or one not
    protruding out far enough will cause problems with waste seeping
    under the appliance. It's not as much of a problem with a Colostomy,
    since that outputs somewhat formed stool, but with an Ileostomy
    and it's very acidic liquid output..... it can be hell! The acid eats
    away at the skin, causing blistering around the peristomal area.
    It's not a situation you want to experience.

    I've had an Ileo since 2006, and just had a new one provided to me
    as part of a plea bargain. The new one was a total surprise, since
    the surgeon said he would not have to do anything with my present
    stoma, and would re-use it if there were any changes in plans of
    the procedure I was undergoing. Really. That's how things happen.

    My new stoma is above the belt line, in the totally wrong spot for me,
    and my old stoma is left in place, discharging mucus at a high rate.
    "Very unusual for it to do that", the surgeon says. And he adds
    to my pain, by telling me it may have to remain for the rest of my life.

    So two stomas, one 6" above the other on the same side, making
    it near impossible to wear any normal clothing.

    So please, do yourself a favor and demand the stoma is placed
    where it is best for you. And demand a proper length spout.

    Always cut the hole for the appliance as snugly to the stoma as possible, no skin
    should show between the stoma and wafer.
    Always wash the peristomal area with water only, NO SOAP.
    Always dry the area with paper towels, not any type of treated fabric or paper.
    Do NOT use any skin preps under the appliance; it degrades the integrity of the adhesive.
    Warm the appliance with your hands after applying it, to set the adhesive.
    Use an Ostomy belt in the beginning.
    Always empty the appliance when it is no more than 1/3 full.
    If a rash or sore develops, use Convetec's Stomahesive Powder, with nothing else.
    (put some on a finger and dab it on, brush off the excess. nothing under the
    powder, and nothing over it, except the appliance.)

    That should be a start....

    I use Coloplast products (Assura series or Sensura series). I found
    that Convetec and Hollister caused me to have rashes. You'll have
    to experiment to see what's best for your conditions. It's all a trail
    and error experience, so don't give up or cry too much, it gets better.

    Ask any questions you need to, and ask here as well. Once you're
    an ostomate for any appreciable amount of time, you are more
    than willing to share what you've learned!

    Take care.

    John
  • sfan428
    sfan428 Member Posts: 32 Member
    Colostomy
    Permanent, 9/08/10 ... feel free to ask anything, I'm an open book! I have adjusted well thus far I guess. Not really looking forward to summer, hate the thought of looking like I am smuggling a gernade under my shirt, but it is what it is.

    Shane