Disheartened, having problems

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JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

Disheartened, having problems

Postby JudeD59 » Fri Aug 21, 2015 11:56 pm

I knew going in that my thin skin on my stomach was going to get irritated very quickly from the adhesive on the bags. They put a bag on after surgery on Wednesday, put on a new one on Thursday to show me how to do it, then decided to put on another new one on Friday because I was going home and they wanted to send me with a fresh bag. Then Sunday I woke up to my first major leak and had to change it all myself. When the visiting nurse came, she said I did a good job cutting it to size, but the waste had worked it's way down through a small fold in my skin and it had to be changed again. It wasn't leaking onto my clothes or skin, but was bad enough that it would irritate the skin it was touching. That is five bag changes in six days next to a 12 inch incision.

On Tuesday, the visiting nurse came again to check things out and she found a small leak under the wafer, so she changed it again.

Then on Thursday, I went to the surgeon and had the drain and staples removed and they said everything looked good. As soon as I got home, the stoma nurse came and changed the bag again so she could examine the area and work on showing me how to do it myself. After she left, I was so excited to have the drain and staples out and to be able to start to really heal. I was lying on the couch and when I got up, the whole bottom half of my nightgown was drenched in pink liquid. I lifted my gown to see where it was coming from and there was a gaping hole in my incision large enough to put a golf ball in.

I called my surgeon's office and they said to just put a compress over it. Are you serious? No other instructions, no come on in to see us, nothing. So I called the visiting nurse and she said she would come by. She cleaned it up, packed it, and put a waterproof bandage over it. Apparently, the drain hadn't work properly to remove the fluids, so they built up until they put enough pressure on the incision to force it open. The nurse called the surgeon's office and told them they needed to see me. They gave me an appointment for today. The nurse said that if the incision split more or gushed more fluid, to go to the emergency room last night, but luckily, that didn't happen.

As I was getting ready for my appointment, the bag the stoma nurse put on popped a big leak and I had to change it. As soon as I lay down on the surgeon's table, I could see poop leaking from the side of the new bag, so the surgeon cleaned it up and changed it again. She looked at the wound and repacked it and said it would have to be repacked everyday until it healed from the inside out. As soon as I got home from her office, I checked the bag and it was leaking again. New bag held up until right after dinner when I felt incredible burning and found yet another leak. The skin is so raw and sore, I decided to lay on my back on disposable pads with gauze around the stoma to catch leaks and let it air dry for a hour. I put another bag on, but the cut wasn't quite right, so that had to be pulled back off and for the sixth time in a day, I put on a new bag.

I can't begin to explain how raw and sore the skin is under the wafer and now I have a gaping incision to deal with, too. The surgeon theorized that the fluid build up caused the wafers to bulge and cause leaks, which caused my skin to produce fluid to protect itself, which is causing the wafers now to pop leaks.

Now a visiting nurse is coming tomorrow to repack the incision and to take the bag off once again to try to find a solution. To say that having them peel the wafer off my raw, traumatized skin is torture is an understatement. I don't have any appetite anyway, but I've been making myself eat and drink. Now I feel like anything I put in is just going to burn like hell as it leaks it's way out and I don't feel like eating anything. They have tried the molding clay and the barriers. I asked them to try the adhesive barrier but they said it can make the wafer come loose. Tomorrow she is supposed to be using the powder to see if that helps.

I feel like I resigned myself to having the bag, emptying the bag, and dealing with some pain on removal, but this is really depressing me. Every little move I make, I can feel the adhesive tugging at the sore skin. I'm not sure how much more I can take.

Sorry to be such a Debbie Downer, but this never-ending pain is wearing me down.

Any tips or suggestions?

Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

ozziej
Posts: 239
Joined: Thu May 21, 2015 8:35 pm

Re: Disheartened, having problems

Postby ozziej » Sat Aug 22, 2015 12:39 am

Hi Judy,
Sorry to hear you're having such a hard time of this :( Leaks are the pits! I was wondering if you had tried the Eakin seals or paste? I was having problems with leaks until I used the seals. Hopefully they might help you too.
Best wishes
Jan
F 56 dx 11/14 Stage 1 RC (post EMR)
No neo-adjuvant or adjuvant chemo/RD
3/15 ULAR (open) temp loop ileo
5/15 ileo reversal
NED and hoping to stay that way!! : )

pfCml73183
Posts: 653
Joined: Sat Jun 22, 2013 7:49 pm
Facebook Username: Celeste Marie Comeau
Location: FL

Re: Disheartened, having problems

Postby pfCml73183 » Sat Aug 22, 2015 1:10 am

Judy, I can't help you, but I have to say this sounds like a really tough time you are going through.
I hope more help is on it's way from others who have gone through this.
Best wishes for finding a solution, Celeste
Wife and BF to Peter, 54
mCRC/IV/BRAF+
Erbitux and Urelumab trial @MSKCC 3/15
went home 5/8/15

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cmewrrie
Posts: 168
Joined: Fri Mar 13, 2015 9:03 pm

Re: Disheartened, having problems

Postby cmewrrie » Sat Aug 22, 2015 4:24 am

I wish I had answers but I can offer my prayers. I hope the powder works. What a rotten situation. :(

Hugs!

-Lisa
wife of DH (04/24/15 dx: age 43) Low RC T3N0M0 stage 2
4/27/15 clear CT
5/18 - 6/25 chemo/rad (ended xeloda on 6/19 due to side effects)
8/12/15 - ULAR scheduled - APR performed due to location - path showed T1N0M0
9/25 begin 5 rounds of xelox
10/30/15 - switch to xeloda only due to allergic reaction
1/22/16- last xeloda!
3/27/16 - post treatment CT - clear except soft tissue presacral area (possibly scar tissue) CEA .5
4/20/16 - post treatment colonoscopy

cathy123
Posts: 665
Joined: Sat Nov 08, 2014 3:36 pm

Re: Disheartened, having problems

Postby cathy123 » Sat Aug 22, 2015 6:20 am

So sorry Judy that really stinks. When I was having trouble with leaks they changed me to a convex wafer which makes the stoma pop out a bit and I haven't had a leak since. But, my leaks were because the opening was close to skin level so the output didn't go up Into the bag. So maybe a different story.

They have had me using the powder with skin barrier wipes since the hospital. I would definitely try that. Because of my ongoing yeast infection I have a special powder now and do several layers of powder and skin barrier wipes til it makes almost a crust. Maybe that would help protect your skin better.

You could also try different brands of bags as the adhesive may be slightly different. I use convatec - the bags peel off pretty easily.

That really makes me mad that the surgeon blew you off. I had a similar thing - I had a tear at the site where the colon was sewed together and has a lot of rectal bleeding. The first day they blew me off, I called back the second day and they begrudgingly gave me an appt for 3 days later. I was bleeding so much that I was faint and was really freaked out.

Hope it gets better soon.
Cathy

Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds

lauragb
Posts: 899
Joined: Sun Aug 28, 2011 5:25 pm

Re: Disheartened, having problems

Postby lauragb » Sat Aug 22, 2015 7:13 am

Sorry you are going through this. I second the idea of the convex wafer, they usually have less adhesive so it's not like pulling tape off the skin and easier to get off. The convex wafer with the paste may help. When cleaning around the stoma, use just water in shower or compresses of water when you're not in the shower. I think dustings of the powder are very effective in helping raw skin heal, you just don't want to use too much. I think the less products put on the area the better and using only water to clean and then the powder.

Good luck. I'l glad you have a nurse working with you.
Laura
RC 3B 7/2011 @ 53
Chemoradiation 5 weeks 8/11
LAR-Hysterect-temp ileo
pCR, 0/23 nodes
Folfox 1/12, Xeloda 2/12 to 5/12
Reversal 5/12
SBO,lysis of adhesions 12/12
NED 11/12, 11/13, 6/16

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Disheartened, having problems

Postby DarknessEmbraced » Sat Aug 22, 2015 7:35 am

I'm sorry you're having such a hard time.*hugs* I hope a solution can be found that will help you!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

Re: Disheartened, having problems

Postby JudeD59 » Sat Aug 22, 2015 10:54 am

Thanks, guys. Yes, they have used the Eakin seal most times that they put a bag on. Doesn't seem to solve the problem. They have also put barriers around to try to help, but the feces leaks happen between the stoma and the inside lip of the barrier, so that doesn't help. Usually I don't even feel the feces as it leaks, but last night it was like acid on my skin and burned for a long time. I'll ask them about the convex wafer and see what they think. My stoma does stick out a good ways, but they found that it has two exit holes releasing stool-one out the top and a small hole on the side that puts out stool, too. So maybe the convex wafer would help raise the small hole up, I don't know.

I have only been using Coloplast one and two piece Mia bags. Maybe I should have her try Hollister or some other brand.

Something has to work soon. When I take the bag off, the skin on the bottom half is dark, deep purple and it hurts to even dab it with pure water.

Even when it's not leaking, I can feel it pulling at my skin with every move. For those of you who had soreness and leaking in the first few weeks, did you eventually reach a point where your skin toughened up and you weren't aware of the bag 24/7? I should have toughened up my ab skin before surgery the way you toughen up your nipples in the months before giving birth so they aren't as sore when you breastfeed.

I'll let you know if the paste and other alterations she does today help. Please let me know if you can think of anything else that might give me even a little relief. Do you use belts to hold it more securely or tummy bands? Do you take pepcid to reduce the acid so it doesn't burn as badly? Alter your diet? Does showering without the bag seem to help? I am desperate for any possible solution at this point.

Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

Sams wife
Posts: 753
Joined: Sun Jan 11, 2015 2:49 pm

Re: Disheartened, having problems

Postby Sams wife » Sat Aug 22, 2015 1:01 pm

We are using hollister because that's what they sent us home with. The ostomy nurse at hospital put the paste on touching the stoma. I hate to post in case it's wrong info but it has worked. If any skin was showing she said use powder. The home nurse changed it once & didn't put it close enough. She told us it wasn't suppose to be that close. It leaked and that's really the only time. I went back to what osto. nurse told us
Well. Accidents & stuff but usually our fault.

He did get red spots under wafer once so we didn't put the skin barrier wipe on that time. We started to but it burned him.
I hope it gets better & easier.
Husband dx 1/13/15 St.2 CEA 7.1
Chemo/25rad 2/15 till 4/24/15
5FU/leucovorin
Surgery 6/8/2015 Stage IIa T3N0MX microscopic cancer left
Watching 4 lung spots
0/5 lymph nodes. Lap. APR
25% less 5FU/leucovorin 7/14/2015 x 26 CEA 3.4
25% more 5fu 9/2015
9/16/15 CEA 7.7
1/16/16 @ 9.2 during allergy?
3/16 New lung spot 4x4 mm
6/16 CEA 6.9 spot 5x5

cathy123
Posts: 665
Joined: Sat Nov 08, 2014 3:36 pm

Re: Disheartened, having problems

Postby cathy123 » Sat Aug 22, 2015 1:52 pm

The skin level exit hole is my problem too and the convex wafer helped. I no longer use any rings or paste at all. My nurse said they were not helping since the output would tend to go under them also.

And yes, at first I would feel a pulling on my skin but I no longer notice it. I did get special underwear from ostomysecrets website which has a pouch that supports the bag. They are pretty much granny panties but seem to help with support if the bag gets full and eliminating the rustling sound the bag makes sometimes. I like that the bag is not right against my skin also.

I do shower without the bag whenever I am due to change it.
Cathy

Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds

JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

Re: Disheartened, having problems

Postby JudeD59 » Sat Aug 22, 2015 2:51 pm

So the visiting nurse just left. I knew she was going to take the bag off, so I took it off an hour before hand and just laid with it exposed to the air. That helped with the pain some. Then she started to torture me. She spend an hour trying all kinds of things that made me sob in pain. Even the stoma paste burned like acid. She said she couldn't find a solution to the leaking and I would probably have to go to the emergency room to be readmitted to the hospital. I don't know if they would have to reverse it now because it just won't work with my skin or if the nurses there would find something that works, but the wafer was peeling up as she was trying to stick it on. I have open wounds under the wafer.

I don't know what to do. If I go to the emergency room, I'll have who knows what kind of people pulling and poking at it and I just don't think I can take it right now. I would rather lay on my couch for days with the stoma exposed and let the feces come out onto saran wrap or something than go be tortured again.

I can't stop crying.

Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Disheartened, having problems

Postby Lee » Sat Aug 22, 2015 3:23 pm

Jude,

I am so sorry you are having this type of pain. How often is this visiting nurse seeing you and WHY is she taking your wafer off so often? Something tells me the reason your wafer is not sticking well and the open sores is due to having the wafer removed so often. Where it is not an open wound, is the skin shinny under the wafer? What type of products are you using? I use Holister wafer and change once, sometimes twice a week (during summer hot hot condition), BUTT mostly once a week. I have the 2 piece system and just change bags 1-2 daily.

If not already doing so, use Adapt Stoma Powder (ref # 7906) and smith & nephew NO STING SKIN PREP. Are you using a paste or a ring for barrier protection between wafer and skin?

My visiting nurse would come by and look at my wafer and bag, BUTT did not remove it on every visit. Between surgery and visiting nurse those first 15 days, my wafer was only changed 2-3 times. The visiting nurse changed the wafer what the surgeon had put on. It was not removed the whole time I was in hospital recovering from surgery.

Hope your get better soon. don't let the nurse take the wafer off again UNLESS you are having problems.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

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chrissyrice
Posts: 1171
Joined: Thu Sep 23, 2010 8:44 am
Location: Atlanta, Georgia

Re: Disheartened, having problems

Postby chrissyrice » Sat Aug 22, 2015 4:16 pm

Oh my heart goes out to you.

Praying for your comfort and for help. Please reach out to someone you can trust to help you.

Chrissy
DX 10-31-09 Surgery 12-1-09 Sigmoid Colon
Stage IIIb T3,N2,MX; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU +LV
12/2010 PET/CT Scan, Cancer Free
7/2012 CT Scan NED 2 years
10/2013 NED 3 years
8/2014 NED 4 years
Recurrence 6/2015: iliac lymph node(s)
8/2015 Surgery: 3 cm tumor removed+iliac artery graft
3/2016 CT Scan Stable
6/2016 Stable
9/2016 Stable
12/2016 Stable
3/2017 Stable
Recurrence 6/2017
12/2017 Surgery removed all cancer w/ clean margins
07-27-2018 Cancer-free for 7 months

Sams wife
Posts: 753
Joined: Sun Jan 11, 2015 2:49 pm

Re: Disheartened, having problems

Postby Sams wife » Sat Aug 22, 2015 5:12 pm

I would say go to ER. The home nurse that came here told my husband the stoma can't dry out. I don't know if that is right or not but he will barley let me dry it to put to put skin prep & wafer on.
Maybe you are allergic to that wafer glue. Do the open wounds look like they may have been blisters. When hubby had them, she told him it was allergy from tape during surgery. It wasn't under wafer it was up on ribs where tape would have went. Like little water blisters. But his didn't pop. Maybe hospital has a different one you can try after this pain gets stopped. I hope it gets better. I hate to hear this.

Can there be 2 openings? Maybe if you see a different surgeon in hospital he will fix it?
Husband dx 1/13/15 St.2 CEA 7.1
Chemo/25rad 2/15 till 4/24/15
5FU/leucovorin
Surgery 6/8/2015 Stage IIa T3N0MX microscopic cancer left
Watching 4 lung spots
0/5 lymph nodes. Lap. APR
25% less 5FU/leucovorin 7/14/2015 x 26 CEA 3.4
25% more 5fu 9/2015
9/16/15 CEA 7.7
1/16/16 @ 9.2 during allergy?
3/16 New lung spot 4x4 mm
6/16 CEA 6.9 spot 5x5

LB10
Posts: 107
Joined: Tue Mar 17, 2015 5:25 pm

Re: Disheartened, having problems

Postby LB10 » Sat Aug 22, 2015 5:32 pm

You need to see a WOCN (wound,ostomy, continence nurse). Not all visiting nurses are wocn's. They are ostomy and skin care experts. I am willing to bet that your visiting nurse is not a wocn. Call your surgeon and ask for a referral. There is also a wocn website where you can search for one local to you. Also, check the UOAA discussion board. It is a wealth of information and there are many experienced ostomates that can help advise you. I am still a newbie but my suggestion would be to use the crusting technique on the sore areas. Stoma powder followed by tapping with the skin barrier pads. Repeat several times until you have a layer of crust. The powder alone will not help because the wafer will not stick to it. You need to use both the powder and the skin barrier wipe. I also think you should try a convex wafer and keep using the eakin seal. You can call the different companies and request samples. If you tell them your problem they will send you what they think might help. Convatec makes a moldable wafer that turtlenecks around the stoma. It might work well for you. I hope some of this helps you. Hang in there you are not alone. Things will absolutely get better. Praying that you feel better very soon.
Stage III Rectal cancer
Dx 3/14
4/14-7/14 8 rounds Folfox
8/14-9/14 Radiation/Xeloda
1/15 APR colostomy
46 yo wife & mom


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