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Ileostomy bag help/advice

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Ileostomy bag help/advice

Postby Fred.R » Sun Sep 15, 2013 12:29 am

Hey.

So, I can't seem to get a handle on this. The bag leaks, the seals break and stuff squirts out of the side... I have to replace the bag every day or every other day because of some sort of nonsense.

I'm using holister stuff, both single and two-step right now.

Every time it doesn't hold, it's a scramble to "fix and/or replace" but worse, it's demoralizing. I feel like I'm doing something wrong. I need to keep positive, I need to focus on healing and the next steps... but every time I go into a bag scramble, it's a punch.

I know in the grand scheme of the board this probably seems trivial but this week has been a bear with these bags. Any advice/words of wisdom would be appreciated.

Thanks. :/

- Fred
DX: 6/20
Surgery: 8/10
Emerg. Surgery: 8:/13
Diagnosed Stage II, t3N0m0
No Chemo
Takedown 11/1
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Re: Ileostomy bag help/advice

Postby Cherie36 » Sun Sep 15, 2013 12:57 am

Hi Fred,

I had similar problems in the beginning. I also started getting sores where the bag sticks to the skin. However, I have a great stoma nurse and I can tell you how see helped me through my problems. The first thing she gave me was Adapt Paste this stuff is my life saver. I squirt it on the bag every time and I use a lot. Since using the paste I have NEVER had a leak. I also change the type of bags I used. Mine are Ekan and have raised wafers you need to try some different types and see what works for you. This helps also as my stoma as it is near a natural fold in my tummy. I also used to use stoma power to dry the skin and barrier wipes to help clear up my sores which happened very quickly. I hate having a bag, it's a pain in the ass :wink: I hate going to the toilet and emptying it I always end up with poop on my hands and the smell is never pleasant but I know if I make it through this cancer shit it will have saved my life. I wear a stoma band to hide my bag it looks like a little skirt on my small body and is a great way of hiding it if I want to get frisky with the husband. I hope this helps.

Cherie
36Yo F
2000 UC
2010 PSC of the liver
2013 Stage 4 CC 15/126 LN spread to the omentum
June Collectomy all visible cancer removed
July Folfox + Avastin
2014 Jan Finished chemo,
2/14 clean scan
8/14 Ileo-anal pouch surgery still NED
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Re: Ileostomy bag help/advice

Postby Cj51 » Sun Sep 15, 2013 1:24 am

Trivial? Hardly!! It's a huge deal and it needs to be addressed. First, do you have a WOCN (Wound Ostomy Care Nurse) assigned to you? If not, call on Monday and find out if there's one at your hospital and make an appointment. It sounds like you might need a different type or shape of wafer, and perhaps some other products that will help increase the wear on the seal and keep it sticking longer. These people are well trained and can really be a godsend when you are having problems. Please do not delay--the output from an ileo is very caustic and once your skin gets sore or starts breaking down, it can be hard to heal it up and get ahead of it.

As you heal, your stoma will change, and that might mean changing products until things settle down. The good news is that all the companies that make these supplies will be happy to send you free samples. All you need to do is ask. After your meeting with the WOCN you might have a good idea of what to ask for--ie, a convex wafer, special materials to help the seal, one piece vs. two piece bags, open end or closed end, etc. It's amazing how many versions of these things are made, and one or more of them will work better than what you have now, you just need to find it. If one type of thing doesn't work, you can call and ask for something different, and they'll send it out for you. It's a good way to find out what works for you, and then when things settle you can stick with it.

Don't give up, it's probably not something you're doing wrong, you just need to be re-evaluated.

Good luck, be sure to come back and let us know how you are doing.

Cj
DX Stage IIIb RC, T3N1M0, April 2010, 51
6 wks Xelox/rad 6/10
resection, temp illeostomy 8/10 Complete response!
12 rounds FOLFOX for clean up 9/10, Allergic to Oxi, started Xeloda only 12/10
Ileo takedown 9/28/11
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Re: Ileostomy bag help/advice

Postby -Sophie- » Sun Sep 15, 2013 3:21 am

I hope you find a great ostomy nurse to help you.

I found holister didn't stick to my skin very well, it is trial an error to find bags that suit you. Every person is unique so will need a specialised system to suit them.

My ostomy nurse was/is amazing. She got me through the whole situation. I met her the day I was leaving hospital and really set me up to be able to do it alone. She also picked up that I needed convex bags that the other ostomy nurse didn't. She had solutions to every problem and would take calls any time 7 days a week. I even sent picture messages of my stoma when I thought something wasn't right. Find some one you click with and is helpful, this is a tough process so don't make it any worse with incompetent or unhelpful people.
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
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Re: Ileostomy bag help/advice

Postby Fred.R » Sun Sep 15, 2013 5:38 am

Thanks. I just feel with so many people dealing with such larger issues "I can't stop leaking poop" feels very trivial.

But right now for me, it's the thing I can't handle, the thing I face every day, the thing that makes me feel I have zero control and therefore the thing that destroys any peace I have. But I still cant help but put it in proportion to those of you who have moved past this inconvenience and are fighting larger, harder battles.

I found a good stoma nurse. I'll see her Wednesday after I meet with doctors, but if I have another mishap she's going to find a way to get to me and figure all this out.

IT's four hours later and so far, I don't look like a Jackson Pollack painting. Perhaps there's peace in the valley.

In the meantime, what other options besides the hollister one and two piece system were you guys thinking about so I could investigate online and have ready for that meeting?
DX: 6/20
Surgery: 8/10
Emerg. Surgery: 8:/13
Diagnosed Stage II, t3N0m0
No Chemo
Takedown 11/1
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Re: Ileostomy bag help/advice

Postby jjlist » Sun Sep 15, 2013 7:09 am

Where are you getting your supplies from? When I was on the bag, my supplier was very helpful in sending out samples of different products. they know all the products. After a few tries, I found something that worked pretty well. I know a lot of people have had success with those moldable seals. by no means is this trivial. this is a huge lifestyle change.
age 56
11/16/09 DIAG low rectal tumor ST II T3N0M0
12/21/09 chemopump radiation
3/18/10 suregry colo-anal anastomosis, no nodes,.
4/29/10 Abcess infection
6/3/10 started 12 folfox sessions completed 10.
1/11/11 ileostomy takedown
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Re: Ileostomy bag help/advice

Postby momof3 » Sun Sep 15, 2013 8:17 am

Try searching ostomy supplies...there is hollister, convatec and a few others. Request samples and you will end up with all kinds of stuff. If there isn't a direct link to samples just use contact us and email them. We use edgepark for supplies and they to will make suggestions and send samples.

My husband got his temp ileo in April. Had many leak issues..we finally just started changing it every morning. If he wears pants with a regular waist...like suit pants he almost always has an issue. He needs to wear gym pants or shorts...or dress pants with a little elastic as the waist.

He is using a one piece hollister bag. When removed we clean the area with just warm water...no soaps. Sometimes uses the eakin rings but usually not. He does have a prescription powder for yeast and puts that around the stoma since it is usually red He just changed to a precut bag which makes things easier and faster.
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
 
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Re: Ileostomy bag help/advice

Postby debzak » Sun Sep 15, 2013 8:30 am

change your brand!! I use conva-tec moldable wafer and bags. The wafer has a putty like ring, about an inch thick, that sticks to my skin and forms a barrier, filling in small spaces, as it warm to my body. I also use some stoma paste, putting a little circle right around my stoma to help fill in any spaces I miss.

I use powder and the wipe things every time. I have only had the seal from the wafer pull away from my body 2x in 10 months, and both times were in the middle of the night. I also use extra adhesive on the outer ring of the wafter, brava elastic barrier strips. They are like big "c" shaped bandaids to add support. I get all of my stuff online from edgepark.

As for the smell.... oh well. There are these drops you can find... to drop into the toilet before you empty your bag... they work a little.

It gets easier... but I still hate it.

Debbi
2/27/12 dx rectal cancer (stage III)
3/6/12 44th B-day
3/19/12 Oxi & 5-FU (8 rounds)
7/9/12 chemo-rad
11/5/12 LAR surgery temp ileo
1/20/13 4 rounds Xeloda
5/13 multiple liver mets
6/4/13 HAI pump at Sloan
KRAS wild & BRAF mutation found :(
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Re: Ileostomy bag help/advice

Postby robinkaye » Sun Sep 15, 2013 8:48 am

My husbands ileo and now colostomy were/are both inverted with severly swollen skin around the stoma making it look like a deep valley. The first weeks and in the case of the
colostomy months were brutal. He shook so bad that he was unable to handle the wafer so I had to come up with something. We went to two of the best Stoma nurses in Chicago but
they couldn't come up with anything that helped.

I started researching and calling different companies for samples...he was using Hollister. There is a company in CA called Cymed, they sell a wafer that is completely flexible and had
a tegaderm type product to hold in place. This was a lifesaver: went from having to change every day sometimes more than once to having a wafer that lasted for three or four days.
His skin was a mess both times and was able to heal as a result.

As the swelling came down I kept trying different products to get him to a wafer that would be easier for him to handle. I had purchased and ordered samples for a bunch of different products and
switched to the Convatec wafer. It's much more pliable and sits well in the valleys. He is now going five days between changes and only changes then because he should, not because he's leaking.

Anyway, it's easier for me to handle all the research and trial and error since I'm not sick, but that's what it took. Stoma nurses tend to deal with one or two products, they can't afford to keep
an inventory of everything out there. I also found that they are unaware of a lot of products that are available. Between You Tube, all manufacturers have videos on their product, research, discussion
boards etc., I found what works. I even went to the drug supply store and opened boxes until I found what I thought might work so I had a big supply at home to choose from. I was lucky, our insurance covered my big shopping trips but I really didn't care...had to find something.

There is a guy on the CSN discussion board that wrote a blog about handling an ostomy. I tried his suggestions and they helped as well. First, throw out all the add on products as the adhesive is made to work alone. Dry your skin with a hairdryer before applying the wafer and then lay down with a heating pad on low covering the wafer for ten minutes. Along with the right product that did the trick.

I don't know what kind of stoma you have or how your skin is (folds, creases etc) but I found that finding an appliance that molds to your skin is way better than trying to fill in the gaps. Hollister, and I'm not knocking them, will give you all sorts of things to use to make their wafer fit...why not try a wafer that fits on it's own. Hollister is a great product if you have flat skin and a protruding stoma but their wafers are hard and unforgiving.

Sorry for the long rant...

Robin
Husband has RC Stage IIIC
Chemorad 9/28-11/07
2 rounds FOLFOX to get rid of iliac LN
LAR Surgery 1/17 ileostomy
presacral abscess 2/1 - 3/27
FOLFOX began 4/5 - 6/15
another presacral abscess 6/30-8/10
Reversal 9/11
10/15 fistula with drain
robinkaye
 
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Re: Ileostomy bag help/advice

Postby robinkaye » Sun Sep 15, 2013 8:52 am

Guess I was writing while Debzak was posting about the Conva-tec. You should really give them a try.

Also, as for the smell which can be pretty awful you have a couple of choices. Go with the disposable bags which are the
best. Just remove the bag instead of emptying and throw away (sealed in a plastic bag) or try some Poopourri...add a couple of
drops to the toilet water before emptying. It's not the best but worked better than anything else he tried. You can find it on Amazon.

Since my husband started using the disposables I hardly notice he's been in the bathroom...and that's a really good thing :-)
Husband has RC Stage IIIC
Chemorad 9/28-11/07
2 rounds FOLFOX to get rid of iliac LN
LAR Surgery 1/17 ileostomy
presacral abscess 2/1 - 3/27
FOLFOX began 4/5 - 6/15
another presacral abscess 6/30-8/10
Reversal 9/11
10/15 fistula with drain
robinkaye
 
Posts: 346
Joined: Fri Nov 11, 2011 10:03 am

Re: Ileostomy bag help/advice

Postby laneylou » Sun Sep 15, 2013 1:06 pm

Apologies in advance for the big long reply - I'm kind of "dumping" all the things I learned while I had my ileo that I wish I'd known going in.

Hang in there. It does get better, I promise (it took me about 2 months to get the routine down and find a "bombproof" setup), but definitely enlist a WOCN nurse to help. Actually, if you can get a home health care nurse to come out and help you figure out a process in your own bathroom for a change or two, that would be great - that really helped me.

Bear in mind the stuff they give you in the hospital is probably basic/"budget" - the supplies I had at first were [unprintable] for me. Between my WOCN and the very helpful people at Hollister, we quickly figured out I needed a flexible, convex wafer and a seal (the "Eakin seals", though I preferred the Hollister version). That's a lot of convexity but it worked for me. The trick with our ileos is that they're "loop" ileos because they're temporary, so they tend to be shorter and sort of double-barreled compared to an end (permanent) ileostomy. Getting them to dump down into the bag like they're supposed to, instead of oozing down behind the wafer, can be finicky. It doesn't help that the stoma is healing in the first few weeks (swelling going down) and changing shape so finding the correct opening size is kinda hard at first. Once it's settled down a WOCN can help you make a template for cutting, especially if your stoma is sort of oval rather than round (like mine was).

So- barrier products! Yes, ask the WOCN about seals. I preferred Hollister's over Eakin because they did the trick, but were easier to get off my skin during changes. 3M Cavilon barrier wipes were a MUST HAVE for me -- dabbed on, then followed by a dusting of stoma powder - amazing how building up a "crust" of Cavilon + stoma powder helped the sore spots heal, even being under the wafer 24-7. I also used stoma paste to fill in a couple very subtle small dents around the stoma that were causing tiny gaps and keeping the wafer from sticking. My WOCN said in general it's best to keep the products to the minimum that works, but it turned out we just needed to keep adding things until it "clicked" for me. You may not need all this hoop-la.

Sticking strategies - no soap, ever - just water. Stay away from adhesive remover if you can as well - you don't want any oily or soapy residue on the skin that will interfere with sticking. Just remove the wafer really slowly and carefully so you don't disrupt the top skin layer too much. And as others have said, try to get the skin as dry as you can before putting on the wafer. A hair dryer on low works well, but you don't want too much direct heat on the stoma. I used to cut little squares of gauze beforehand and put them underneath/over "Donald" (so named because he quacked :) ) to catch any rogue output and protect against the hair dryer heat, but there were times where I'd be swearing because he "waked up" in the middle of a change. It happens. Speed is key with ileo changes to make sure you can take advantage of your "quiet moments" - have your set up ready to go in an assembly line (wafer cut, products opened, washcloths handy, etc.) so you're not fumbling. I used to put the seals right on the wafer beforehand so I could just stick both pieces on at once. Lying down with a heating pad (on low) or even just with your hand over the stoma/wafer for about 10 minutes will also help the wafer stick down.

You will be amazed how quick you can do it after a few months. By the time you really get it down it will be time for reversal :D

Smells - I swore by M9 deodorizer (I got it from Edgepark). They make these magical drops that really worked for me - a few drops of bright blue liquid in the "tail" of the bag after each emptying and it really did cut down on the smell. They make an excellent unscented room deodorizing spray (much better than Febreze or other air fresheners). My insurance covered the drops, and I paid out of pocket for the room spray. Actually I just picked up another bottle of the spray off Amazon - no ileo anymore, but just to keep in our bathroom because it works! I wish they made these in pocket size; looking back I should have just decanted some into travel-size bottles to carry in my "emergency kit".

Don't despair - you can do this! So many of us have been right where you are now and come out the other side :P
Laine, dx @ 39, 4/12
T3N0M0 Stage IIA
Emergency IVF, 4/12
Chemorad, LAR/temp ileo, FOLFOX (no oxi after #2)
DVT on chemo; IVC filter
Reversal/port out 5/13
IVC filter finally out 2/14
NED (clean CT, scope, CEA)
laneylou
 
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Re: Ileostomy bag help/advice

Postby bellavida » Sun Sep 15, 2013 1:19 pm

I was told right after my resection that anyone who has a temporary ileostomy MUST have a convex wafer and wear the belt. I was leaking with every single bag when I left the hospital because they gave me a supply of flat wafers. They didn't even have belt hooks but they gave me a belt. As soon as I started using the convex bags I didn't have any leaks. I also use the eaken seal for skin protection.
[color=#4000FF]T3N? dx 10/8/12 (IIIa I think)
45yo mom of 5/wife
5.5 wks chemo/rad
Post resec DX: T2N0Mx
Xeloda 3/13
8/13-2 nodes watch and wait
2/14-failed biopsy
4/14-removal of lung nodes, pos for met colon can
5/14-begin folfox
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Re: Ileostomy bag help/advice

Postby laneylou » Sun Sep 15, 2013 1:57 pm

I was told right after my resection that anyone who has a temporary ileostomy MUST have a convex wafer and wear the belt. I was leaking with every single bag when I left the hospital because they gave me a supply of flat wafers.


I really wish I had been told the same thing in the hospital - the Hollister rep (a WOCN nurse herself) suggested a convex wafer (and sent me samples), and when I brought it up to my new WOCN she basically said, OF COURSE, duh! Those rigid, flat wafers were absolutely useless for me.

I tried a belt, but it didn't work for me - I am pretty small (and was near my lowest weight ever right after surgery), and very short-waisted. With the placement of my stoma the belt wouldn't sit around the tops of my hips (in line with the stoma), but slipped up around my natural waist, where it wasn't doing any good. Instead we went with a convex wafer and full-thickness Eakin seal to try and get the stoma to sit up more. Worked well.
Laine, dx @ 39, 4/12
T3N0M0 Stage IIA
Emergency IVF, 4/12
Chemorad, LAR/temp ileo, FOLFOX (no oxi after #2)
DVT on chemo; IVC filter
Reversal/port out 5/13
IVC filter finally out 2/14
NED (clean CT, scope, CEA)
laneylou
 
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Re: Ileostomy bag help/advice

Postby Cj51 » Sun Sep 15, 2013 3:42 pm

Just in case you haven't received one yet, I got a little 'starter kit' from both Hollister and Convatec. It included a nice little carry bag for putting your supplies in, a pair of curved scissors for trimming, and some supplies. Definately ask for one of those! I found that Convatec products worked well for me, at the time they had the moldable seals, which were really nice in the early days when my stoma was changing.

Looks like many have chimed in with lots of advice, hang in there--you'll get through this. You DO have control over the situation, you just needed to get started in the right direction.

Best,
Cj
DX Stage IIIb RC, T3N1M0, April 2010, 51
6 wks Xelox/rad 6/10
resection, temp illeostomy 8/10 Complete response!
12 rounds FOLFOX for clean up 9/10, Allergic to Oxi, started Xeloda only 12/10
Ileo takedown 9/28/11
Cj51
 
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Re: Ileostomy bag help/advice

Postby Cherie36 » Mon Sep 16, 2013 4:28 am

I used to cut little squares of gauze beforehand and put them underneath/over "Donald" (so named because he quacked )


LMAO my husbands name is Donald I will never look at my stoma or Donald the same :lol:
36Yo F
2000 UC
2010 PSC of the liver
2013 Stage 4 CC 15/126 LN spread to the omentum
June Collectomy all visible cancer removed
July Folfox + Avastin
2014 Jan Finished chemo,
2/14 clean scan
8/14 Ileo-anal pouch surgery still NED
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