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Who has an Ostomy?

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

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

Annabelle41415's picture
Annabelle41415
Posts: 6448
Joined: Feb 2009

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's picture
TMac52
Posts: 358
Joined: Aug 2010

I have a perm colostomy since 5/10.
Tom

Lovekitties's picture
Lovekitties
Posts: 3341
Joined: Jan 2010

I have a perm colostomy since March 2010.

Always glad to help any who have questions about it.

Marie

PamPam2's picture
PamPam2
Posts: 376
Joined: Jan 2009

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's picture
karguy
Posts: 1024
Joined: Apr 2009

Mine is permanant,since july of 2008.

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

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

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

Temp ileostomy in june 09, takedown in sept 09. will to answer any questions. Petrina

soccermom13's picture
soccermom13
Posts: 226
Joined: Feb 2010

Take down surgery June 2009. Would be happy to be on your list.
hugs
Shanna

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

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

Gail

sherrylee
Posts: 19
Joined: Jun 2010

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

sherrylee
Posts: 19
Joined: Jun 2010

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

TxKayaker's picture
TxKayaker
Posts: 177
Joined: Jun 2009

Take down Dec. '09

RickMurtagh's picture
RickMurtagh
Posts: 585
Joined: Feb 2010

I had a temp ileostomy from June 18, 2009 until April 20, 2010.
I will more than likely have a permanent ileo in the very near future.

***update*** I now have a permanent ileo

flcajun1969
Posts: 8
Joined: Oct 2010

I have a permanent Ileostomy. It was given to me at age 37 on 12/21/06.

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

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
Posts: 59
Joined: Dec 2008

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.'s picture
Kenny H.
Posts: 503
Joined: Aug 2010

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's picture
dianelynn41
Posts: 71
Joined: Jan 2011

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

John23's picture
John23
Posts: 2140
Joined: Jan 2007

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

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

Ileostomy

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

pete

sfan428's picture
sfan428
Posts: 32
Joined: Jun 2010

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

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

A list is created in my blog: Ostomy List

I also added the link at the top of this thread, and I will Link back to the thread in the blog.

As names are added I will try to keep the list updated.

Again, thanks to all who are sharing,

Blake

catsyb's picture
catsyb
Posts: 1
Joined: Apr 2011

Had the ileostomy in Aug 2008 and take down Oct 2008.

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

I have a temporary colostomy. I got it on May 14,2010 during emergency surgery to remove my tumor which had totally blocked my colon. I am coming up on one year and am hoping to have my reversal here in the next couple of months. It would have been done sooner but of course cancer doesn't always play by the rules so I'm running a little behind in my reversal surgery. I never had a chance to think about what life would be like with a colostomy, because my life was so miserable before it, I felt great with it and no longer being blocked. I was happy to have the colostomy. Now, I'm sort of tired of dealing with it and am ready to say so long. Part of the reason may be that I'm off of chemo right now and feeling so good and very busy with other things that I just don't want to deal with the "cancer stuff" and it's a bit of a reminder.

If anyone has any questions about my colostomy they can feel free to PM me and I will answewr any questions that I might have the answer to.

Conchal's picture
Conchal
Posts: 42
Joined: Apr 2011

Hi, Blake (and all):

Does anyone have experience dealing with a urostomy or in helping a family member with a urostomy (permanent). My wife now has one and sometimes we have questions about it.

Thanks

Conchal

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

Ostomy Forum

Ostomy.org:

800-826-0826

They may be able to hook you up with someone close by if you call them.

Conchal's picture
Conchal
Posts: 42
Joined: Apr 2011

Thanks a lot! I will give it a look.

Con

thebob61
Posts: 11
Joined: Mar 2011

I have a perm colostomy since july 2010 . any questions just ask.

Moesimo's picture
Moesimo
Posts: 1080
Joined: Aug 2003

I had my first surgery with a temporary ileostomy in 6/03. Eight weeks later I had a reversal done. I then spent the next 18 mos. in the bathroom or looking for one. I then made the hardest decision in my life and had a colostomy done. I havent't looked back. Life is good now, really. While I wouldn't have picked any of this, I am grateful that I am 8 years out from my stage 3 rectal cancer diagnosis at age 46. I now irrigate my colostomy and that has made life with one so much easier to deal with. My stoma was marked presurgery by the stoma nurse and is a good spot. My stoma is small and I get bags that have the whole precut. They are one piece drainable. Any questions feel free to ask or send me a message.

pluckey's picture
pluckey
Posts: 484
Joined: Jul 2009

Temporary Ileostomy - March 2009 to Sept 2009

Lots of blow outs
Lots of experimenting with appliances
I'm here to serve!

Peggy

crazylady
Posts: 544
Joined: Jun 2004

I've had a permanent colostomy since June 2004.
Jamie

Patti1
Posts: 109
Joined: Feb 2006

Hubby has a permanent colostomy since 2/2006. Feel free to ask any questions.

If anyone is a bit short on supplies, please let me know as I have some extras.

Love ya all,
Patti

djm_2010
Posts: 52
Joined: Dec 2010

Hello I had my operation for rectal cancer stage 2a last nov 2010 and a permanent colostomy was placed because the tumor was way below and my surgeon want to have clear margins of the cancer. He could not and won't take the risk of me having a recurrence since rectal ca has a high rate of recurrence at first I was really depressed, even now I still feel lonely and grossed out when I see my stoma but if it means that I will live longer, then so be it, since my children are still young. I'm having the last of my Delos therapy on may 27 and praying that this cancer won't come back again. If anyone are having problems just pm me and I'm willing to help. Thank you and God bless you all.

mike_in_ky's picture
mike_in_ky
Posts: 8
Joined: Sep 2010

Have had mine since 04/08. Can't reverse so it will be with me a long time(I hope..lol). Am here to answer any and all questions. Fire away.

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

Nov 11, 2009. No problems, learned which products were best for me (convex wafers as I have an "innie" versus and "outie" - and John23, no problems because of that.) Everyone's experience is different....just saying.

It was the best decision for me. I am here if anyone has questions.

Vicki CO

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

how are you darling Vicki....long time no see

hugs.....mags....still quilting my heart out

jjjnettie
Posts: 8
Joined: Jul 2010

:D Permanent colostomy formed 4th July 2007.
I call it "the triffid".
Got a love hate relationship with it.
Love that it was the means to keep me alive, hate that I've got to wear a damn bag.
But big bonus is that I don't have to stop what I'm doing to have a poop, and I go through far less toilet paper.
My kids have learned to do as I ask, under the threat of "I'll release the gas if you don't" LOLOL

starla566's picture
starla566
Posts: 1
Joined: May 2011

New temp ileostomy as of 4/21/2011. It's a scary thing to get used to for me.

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