Ileostomy bag help/advice

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-Sophie-
Posts: 67
Joined: Mon Apr 08, 2013 12:47 am

Re: Ileostomy bag help/advice

Postby -Sophie- » Mon Sep 16, 2013 9:12 am

Maybe its a different brand name in Australia but I used dansac convex. They have just brought out a new bag style so there is less bag above the seal. It sat closer to my skin and didnt bulge out as much when it was filled with gas.

My stoma nurse had so many styles to choose from as she received samples from every company. It was amazing to see the variety.
29 yo f w daughters 5 & 2
Dx nov 2012- 3c (T4N2M0)
Chemo/rad Dec 2012 - Jan 2013
16 march 2013 LAR + rad hyst, temp ileostomy
Patho no viable cancer found, 0/10 lymph nodes
April - June 2013 Chemo 5fu, 4 rounds
July 31st 2013 reversal and port removal

Fred.R
Posts: 48
Joined: Fri Aug 30, 2013 3:00 am

Re: Ileostomy bag help/advice

Postby Fred.R » Mon Sep 16, 2013 9:36 am

Today I'm going to try to take a little more control of the situation. I meet my Stoma nurse (who I very much like) on Wednesday, but I'm trying to "stay intact" until then, because I need to learn how to live with this.

So I've created a little "emergency kit" to take with me.

1 pre-cut hollister base (I cut it)
1 snap on bag
1 small package of gel/deodorizer
1 "pee pad" that would ordinarily be used for puppies, something I can stand on while I replace a busted bag / torn bag
1 garbage bag
Plenty of paper towels

All of this fits in an "overnight pill container" which, if I carry with me, allows me to catch a leak or an issue, duck into a bathroom somewhere and deal. The only thing I can't carry is the change of clothes but that's one of those things where if the poop hits the fan (or the floor or the feet) I have to suck it up and get home.

Is there anything else you guys would suggest that I carry so as to be able to leave the house with confidence?
DX: 6/20
Surgery: 8/10
Emerg. Surgery: 8:/13
Diagnosed Stage II, t3N0m0
No Chemo
Takedown 11/1

stevieb
Posts: 410
Joined: Sat Feb 09, 2013 12:26 am

Re: Ileostomy bag help/advice

Postby stevieb » Mon Sep 16, 2013 10:00 am

The adhesive paste really helped when I had mine.
Dx age 33
12/19/12 Stage IV liver/lung
1/14-2/28/13 Folfox
3/27/13 rectal/lung rst; temp ileo
7/11/13 liver res/ileo rev
9/30/13 - Folfox
11/13,2/21 NED
3/14 lung recur;6/16-VATS
7/14 5 bi lung mets
10&11/15 laser lung surg
2015 Colondar Model
12/15 5 lung met-folfiri
5/15 NED
11/15 2 lung mets; cryoablation
1/4/17 2 lung mets; cryoablation
NED as of 1/23/17

momof3
Posts: 213
Joined: Thu Sep 13, 2012 8:52 pm

Re: Ileostomy bag help/advice

Postby momof3 » Mon Sep 16, 2013 10:35 am

I would add medical gloves to your emergency kit and those square gauze pads which are better for cleaning the area. We just throw a bunch in a baggy. Also they sell diaper disposal bags at places like walmart that are like $1 for 50 bags! Great for disposal. Cant you leave a change of clothes in your car? We have kits in both cars and hubby keeps a kit in his desk at work too.
Husband was 46 when diagnosed stage 4 aug 2012
folfox and avastin ... then surgery april 2013
mets only to paraaortic nodes
Mets to femurs and spine found Nov 2013

momof3
Posts: 213
Joined: Thu Sep 13, 2012 8:52 pm

Re: Ileostomy bag help/advice

Postby momof3 » Mon Sep 16, 2013 10:40 am

Oh also a roll of medical tape in case its a small issue that can be patched until you get home. My husband can feel when a leak is going to happen..skin starts to burn. One other issue he had was the Velcro on the bag to drain it would get stuck to his pants. Opened and ran down his leg more than once...one time on his first day back to work. Not good! He now uses a large paper clip covered with packing tape for extra security on the clip.
Husband was 46 when diagnosed stage 4 aug 2012
folfox and avastin ... then surgery april 2013
mets only to paraaortic nodes
Mets to femurs and spine found Nov 2013

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chemo sabe
Posts: 444
Joined: Fri Mar 09, 2012 9:01 pm

Re: Ileostomy bag help/advice

Postby chemo sabe » Mon Sep 16, 2013 6:24 pm

Obviously this is not a one size fits all subject or solution. Here is my experience: I had my bag for nearly 8 months (Feb - Oct 2012). I used the Coloplast one piece, self adhesive, cut your own Stoma hole bags. During that time, the leaks were limited to an occasional night-time problem - probably due to me laying on it. My preparation was to ensure the old glue was removed from my skin (in the shower). While drying off, I put the new bag under my arm to warm it. After drying, I always applied the 3M barrier film to my skin from my stoma to the edge where the bag would go. I would then apply a thin line of stoma adhesive to the edge of the hole. To apply the bag, I would lay down and start at the center and work out in a spiral fashion. I finished by applying a bit of low heat from a hair dryer. This worked for me.

(ps) - they only call the stuff paste - it does not stick nor will it help with adhesion. The stuff is just to level out your body a bit so little channels are not created when applying the bag. I just used a thin line and got my level by lying down, feet on the floor.

So what I would call important parts are:
remove all the old glue
use barrier film to prevent burns
use stoma paste to level out the immediate area around your stoma
warm the adhesive part of the bag to get a good seal
support your bag - I used long strap tee shirts to form a pouch for my bag and tucked the rest into my slacks.
64 year old male
Diagnosed Stage 3 Rectal Cancer - T3N1M0 - Oct 2011
28 radiation treatments with xeloda
Colon resection with ileostomy Feb 2012
8 Rounds of Xelox completed Sept 2012
Ileostomy reversal surgery Oct 2012
Incisional Hernia Repair Nov 2013

lorrainem
Posts: 819
Joined: Tue Dec 18, 2007 2:34 pm
Facebook Username: https://www.facebook.com/lorraineaminogue
Location: NY

Re: Ileostomy bag help/advice

Postby lorrainem » Mon Sep 16, 2013 6:44 pm

Fred, you have received all the advice you need above. It's all correct and you will find what's right for you. Just wanted to chime in that I cried for quite awhile after getting home from the hospital; not because I had the stoma, because I couldn't "control" it.

I also had a nurse who knew less than I...go figure; my husband took over and knows how to deal with me so after awhile all was well.

It will come with time and trial and error. But it will come when you find what products or variety work for you. In my case it was the convex wafer, a wafer ring and the anti fungal powder, but you will find your way too.

Good luck, it comes with time.

Lorraine
Chemorad/Surgery/Chemo
Stage II, no mets, no nodes NED 05/08 again 08/08 again 11/08
Ileostomy reversal 10/16/08

nicola smith
Posts: 1040
Joined: Thu Oct 07, 2010 9:06 am

Re: Ileostomy bag help/advice

Postby nicola smith » Tue Sep 17, 2013 1:28 pm

Great advice, especially the parts about using a convex wafer and lying flat for 10 minutes or so after a change and warming the wafer (I just used the warmth from my hand, others use a hairdryer).

I also found the forum at ostomy.org very helpful and you might want to check out that information source as well. Here's a link

https://www.ostomy.org/forum/index.php
UC history
11/09: Dx, CEA 2.9
02/10: colectomy, temp ileo; pT3N1Mx
10/10: 12 Folfox6
03/11: jpouch
2010/11/12/13/14: 6 PET and/or CT's - NED
quarterly 03/2010- 03/2015: CEA range 0.8-1.3
03/2015: discharged to GP :D

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flutie75
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Facebook Username: flutie75
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Re: Ileostomy bag help/advice

Postby flutie75 » Wed Sep 18, 2013 12:13 am

It's been so long since I had my temp ileostomy, but I'm pretty sure I user the opaque hollister bags. I got the cut-to-size ones and used adapt paste every time. I only had a handful of leaks with them, but I also had a fab ostomy nurse right out of the gate. You'll also want to get alcohol-free wipes for cleaning around your stoma when you do change the bag. Make sure it fully dries before applying your bag, as well. Try to lay flat or hold your stomach as flat as possible and hold your hands over the bag when you first apply it... This will help heat the stuff that sticks to your skin and give you a better hold. I hope this helps! :)
2015 Colondar Model
Stage III dx Aug '08
5FU/rad. Fall '08
Colon resect w/ temp ileo Jan '09
FOLFOX Spring '09
Stage IV dx Aug '11 (liver met)
FOLFIRI Fall '11/Spring '12
Liver and bladder resect, hyster. Dec '11
2nd met (lungs and LN) Feb '13
IVC

Jachut
Posts: 1137
Joined: Mon Sep 26, 2011 11:16 pm
Facebook Username: hutchinson@aanet.com.au

Re: Ileostomy bag help/advice

Postby Jachut » Wed Sep 18, 2013 6:07 am

A convex applance solved all my problems this time around - it may not appear obvious that you need one - i have a very flat stomach and tight skin but my stoma still disappears into a hollow when i bend, causing tenting in the base plate. I had smell issues be cause i never had a complete seal. Worth a try.

Rheaeliza
Posts: 421
Joined: Fri Dec 14, 2012 4:42 pm
Location: New York, New York

Re: Ileostomy bag help/advice

Postby Rheaeliza » Wed Sep 18, 2013 8:15 am

As someone who just got a temporary loop ileostomy put in last week, this thread has been super helpful for me.

Was wondering if anyone has any suggestions on any bands/wraps for the bag to sort of keep it closer and more secure to my body? I've seen a few products out there just wondering about personal experiences. I'm going home from the hospital today and am nervous about being in regular clothes, in the "regular world" too. I know the bag can just hang lose, I guess I feel like I would feel better if it was just a little secure to me...

Thanks guys!

Rhea
12/7/12: 30 yrs. old, Dx stage 4b.mets to liver, ovary, nodes, ommentum.
7 months chemo, shrinkage!
8/26/13 HIPEC, colon resection,hysterectomy, appndx, gallbladder out.
9/12/13:leak in colon, temp. loop ileost, home 9/18
11/3/13: liver resect.
1/2014 Ostomy reversal, one week later, abcess surg., fistula, tpn.
No more chemo, NED since 11/13

nicola smith
Posts: 1040
Joined: Thu Oct 07, 2010 9:06 am

Re: Ileostomy bag help/advice

Postby nicola smith » Wed Sep 18, 2013 5:21 pm

Rheaeliza wrote:Was wondering if anyone has any suggestions on any bands/wraps for the bag to sort of keep it closer and more secure to my body?



Rhea


The belly bands sold in maternity stores worked well for me.
UC history
11/09: Dx, CEA 2.9
02/10: colectomy, temp ileo; pT3N1Mx
10/10: 12 Folfox6
03/11: jpouch
2010/11/12/13/14: 6 PET and/or CT's - NED
quarterly 03/2010- 03/2015: CEA range 0.8-1.3
03/2015: discharged to GP :D

Busymamaof3
Posts: 193
Joined: Fri Sep 07, 2012 1:37 pm

Re: Ileostomy bag help/advice

Postby Busymamaof3 » Wed Sep 18, 2013 7:28 pm

I have the wraps from ostomy secrets and love them. I wear one all the time - even when I sleep. They make me feel secure and I don't have leaks.
Dx Stage IV CRC 8/12, 40yrs old
3 kids under 10
10/5/12 1 met to liver
folfox w/avastin 4 rds
Folfox alone 4 rds
HIPEC/CRS 2/13/13
PT3N1cM1
Back on Folfox 3/12 - 4/23/13
It is back 8/23/13
FOLFORI 9/13-1/14 cea up
Folfox 1/13
Hipec w crs #2 2/27/14

MilwaukeeMal
Posts: 53
Joined: Tue Feb 19, 2013 1:54 pm
Location: Milwaukee WI

Re: Ileostomy bag help/advice

Postby MilwaukeeMal » Thu Sep 19, 2013 12:54 pm

I get "Steni the Stoma" dressed first thing in the morning, especially before my coffee. I had to change his name in deference to Stevie, who was my stoma/wound case nurse.

Milwaukee Mal
2000 Pan-ulcerative colitis; 4/26/2010 resection; 5/16 nodes
pulmonary embolism May 2010
2010 12X FOLFOX
Oct 2012 peri & omentum mets; CC Stage 4
Nov-Dec 2012 FOLFORI+Avastin
March 2013 HIPEC; 18 mo NED!
now 10-12 spots on liver; back to FOLFOX....


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