Disheartened, having problems

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

Re: Disheartened, having problems

Postby JudeD59 » Wed Aug 26, 2015 1:35 pm

Update-So a WOCN nurse who had been on vacation came to see me yesterday. She took care of repacking the open incision and then talked with me for a long time about the ostomy problems. Last week, I was walking the edges of my yard twice a day, eating pretty well, and getting stronger every day. This week, I have trouble walking from my bed to the bathroom because I'm so weak and in pain. I'm losing all the strength I gained. She didn't want to take the bag off that I had put on yesterday because she didn't have the replacement bag she wanted to try. She took charge the way I thought the first six nurses would but didn't. She ordered samples for me from different companies, including convex wafers to push the leaky side hole above the wafer opening to stop the leaks. She told me that the other nurse who came (the torturer) absolutely shouldn't have been applying stomahesive paste all over my area because it contains alcohol which is why it was excruciating on my open sores.

So today, she had me take a shower right before she came and remove the packing and the bag (which had started leaking slightly again in the night). Then, once she could see the uncovered stoma, she said the convex bag was what was needed all along. She gently cleaned the area, then put a patch on the open sore that had healing medicine in it. She then covered the whole red, sore area with a large Eaken seal and put the convotec convex bag on. It feels better already. We're using a belt to help secure it tightly to my body. We're hoping it will stay without leaks for 48 hours and then a nurse will change it using the exact same steps she used--medicated pad on open sores and Eaken seal covering the red areas, followed by the convex wafer and the belt.

I always wanted to use a two piece bag because I can't stand how nasty the bag gets, but she thinks we should stay with the once piece until the area is healed a bit more and then try the two piece convex, and I'm fine with that. My priority right now is to end the constant pain and find a system that isn't constantly leaking. And if the bag isn't constantly pulling on my sore skin and leaking, I'll be able to start walking outside again and get my energy back.

I have an appointment with the surgeon next Tuesday and they will probably put a wound vac on at that point to close the incision.

Everytime I take a bag off, the Eakin seal and adhesive is covered in blood. Last night, I looked at my bag and it looked like it was half full of blood and I almost passed out. Then I remembered I ate beets for dinner, which I know can look just like blood in the bag. Whew. That started my heart pounding.

It's all still really sore and it's going to take awhile to heal, but I feel like I might finally be on the right path for me. The WOCN nurse said they won't want to start chemo until the wound is healed, so that might be delayed a bit, but I'm okay with that.

Thanks again for all the support. You guys are the best.

A very weary but not defeated 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

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

Re: Disheartened, having problems

Postby pfCml73183 » Wed Aug 26, 2015 8:07 pm

You sound so relieved. What a difference one person can make with your care.
I hope things will get better from now on and you can get strong again.
Celeste
Wife and BF to Peter, 54
mCRC/IV/BRAF+
Erbitux and Urelumab trial @MSKCC 3/15
went home 5/8/15

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

Re: Disheartened, having problems

Postby Lee » Wed Aug 26, 2015 8:57 pm

Jude,

So happy to read your recent post. Finally an Ostomy nurse who can help you. I hope your road from this day forward is healthy and happiness and strength.

Thinking of you and (((HUGS))).

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!

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

Re: Disheartened, having problems

Postby ozziej » Thu Aug 27, 2015 2:05 am

Hey Judy,
So glad to hear that things are on the up and up. A good stoma nurse is worth their weight in gold, just a shame it took so long for one to get to you. Never mind the Olympics, whoever designed those Eakin seals gets a gold medal from me. Here's hoping that you are much more comfortable from now on. Keep us posted.
cheers
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!! : )

MaryannW
Posts: 76
Joined: Thu Jun 04, 2015 7:32 am

Re: Disheartened, having problems

Postby MaryannW » Thu Aug 27, 2015 2:45 am

Hi Jude, I'm hoping the procedure works for you. I have a nice little routine now to change my bag. First I clean with warm water and cloth x 3, then I blow dry on cold setting. Next I rub dansic cream on any red bits (outside eakin seal where wafer adhesive hits skin) followed by another blow dry and dusting on cotton wool with convatec stomahesive powder (less is best). I then warm eakin seal in hands then roll back centre in roughly same shape as stoma. Finally I fold the hard paper from seal in 4s and use the edge of it to mould seal to stoma making sure it is all snug up against stoma. Finall precut convatec esteem convex drainable goes on.

Yes this is fiddly and detailed but the bag sticks like glue and I'm totally confident with it. One piece of advice I got from stoma nurse was that if u are putting cream or anything else on eg powder put microscopic amount on as it will interfere with eakin seals sticking ability. That's also why I blow dry so skin is dry.

Also just remember that wound dehiscence is horrible but in scheme of things better than some other complications. The ULAR is a massive op to undergo.
Best wishes
Maryann
Dx Feb 2015 RC Stage 2a
5.5 weeks Xelolda + Radiation
ULAR 25.6.2015
6 Rounds mop up Xeloda
Reversal 7 April 2016
NED & living with LARS

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

Re: Disheartened, having problems

Postby LB10 » Thu Aug 27, 2015 4:02 am

Judy,
So happy to hear that you were able to get the right help. Hoping you feel better and stronger everyday.
Lisa
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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cmewrrie
Posts: 168
Joined: Fri Mar 13, 2015 9:03 pm

Re: Disheartened, having problems

Postby cmewrrie » Thu Aug 27, 2015 7:12 am

So glad you finally have the support you need and things are turning around :)

--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

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Bev G
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Facebook Username: Bev Golde
Location: Quechee, VT

Re: Disheartened, having problems

Postby Bev G » Thu Aug 27, 2015 8:12 am

Hi Judy,
What a nightmare you've been through, butt you're strong and tough, and you ARE making it through. I want to preface my couple of comment with the fact that I do not have an ostomy, butt I can say that as a nurse it sounds like you are on the right track. I'm so glad a competent nurse came to help you.

I did have a wound vac for my liver resection failure to heal and wanted to mention some stuff I learned the hard way. My liver incision was about 26" long, a mercedes-benz incision. It was nothing butt problems from the beginning. There was a small area that opened and leaked. Over the course of a couple of weeks they opened more and more of the incision. Eventually the entire wound was open, and down to the fascia. It drained many cups of stuff a day. Eventually, the applied a wound vac. Unfortunately my home care nurse who came every day to change the packing/wound vac. I had no way of knowing at that time that she had NO IDEA what she was doing. As it turns out, she made things much worse rather than any better. A couple of months after the liver resection the wound had basically not healed at all. Her aggressive mucking around had created/worsened tunnelling happing at the bottom of the wound. Two months later I had to go back to surgery and have the whole thing re-opened down to the fascia. The wound vac was abandoned and I went to twice daily wound re-packing until it finally healed. That took seven months. By November the incision had finally closed, and my mop-up chemo (which should really have started within 6 weeks) was finally started.

On one of the home nurse's last visits she brought with her the nurse specialist from the wound-vac company. The company nurse was mortified by what she had been doing. Initially the wrong sponges were being used. Removing them from the wound was torture---they were very had, rough and most like brillo pads, and the wrong ones for this application. She had been aggressively using long q-tips to "clean" the incision. She wound up poking holes through all the tissue that HAD healed, and eventually these defects completed covered the incision bed. Most importantly, I think, was that I should have turned the wound vac off about an hour before the nurse came. That would have allowed the packing to soften with the tissue leakage and largely eliminated the intense pain of removing the packing. Taking pain medication, if needed, and hour before the vac change is a good idea, and at that time turning the vac off. I hope your wound vac experience is NOTHING like mine, butt if you get the feeling that your nurse isn't really familiar with the vac, ask for the company specialist to be called out immediately. I should add that my half-century of type 1 diabetes massively contributed to my wound healing issues, butt competent care can't be substituted.

WIshing you the very best, and fast continued healing.

Hugs to you,

Bev

PS I don't know how long your chemo will be delayed. Mine was so far out there was contemplation of just not doing it. I went to MSKCC for a second-opinion about the chemo and Dr K suggested skipping it. My onc and I were uncomfortable with that, so I had 5 months of chemo starting in November (liver resection had been in early April. I am unbelievably fortunate that I have been cancer-free since my liver resection in 4/10. Try to not worry too much that your chemo is being delayed a bit.
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

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Jacques
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Location: Occitanie

Re: Disheartened, having problems

Postby Jacques » Thu Aug 27, 2015 12:54 pm

Bev G wrote:...Try to not worry too much that your chemo is being delayed a bit.

Judy -

I second the opinion of Bev G. I know that you tend to worry a lot, but try not to worry so much right now. Things will gradually get better. I'm sure of that.

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

Re: Disheartened, having problems

Postby JudeD59 » Thu Aug 27, 2015 5:50 pm

Jacques wrote:
Bev G wrote:...Try to not worry too much that your chemo is being delayed a bit.

Judy -

I second the opinion of Bev G. I know that you tend to worry a lot, but try not to worry so much right now. Things will gradually get better. I'm sure of that.


Thanks, Jacques, but what I actually said was that I was okay with it being delayed, not that I was worried about it. :) And maybe others see my questions as worrying a lot, but I actually just like to know as much info in advance as possible. It makes things less scary for me. I know there will always be twists and unexpected turns, but being mentally prepared and having the supplies I might need before starting a new treatment helps me stay calmer and less worried. In fact, the nurses who have visited have been shocked by some of the supplies I have at hand and have asked me how I knew about them and I was proud to tell each of them that I learned about them on here. They have used some of the stuff you guys recommended instead of what they carry with them because CC stuff works better and they know it. It's just not included in the standard bag of stuff they carry.

Every time I have had to face another surgery, I have done research, asked questions, read message boards, and prepared my house to make my recovery as smooth as possible not only for me, but also for my caregivers. I don't want them scrambling to find a certain medication or pillow or soap or bandage or whatever at the local stores when I can have it ready and waiting.

Thanks for the info about the wound vac, Bev. I'll be seeing the surgeon about it on Tuesday and I will definitely make sure that if I have to have one, the people maintaining it know what they are doing. I'm so sorry you had to go through all of that. :(

Still no leaks on convex wafer bag with belt. Fingers crossed it will work until the nurse changes it tomorrow.

Love and thanks to all,
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

Cj51
Posts: 893
Joined: Thu May 13, 2010 5:58 pm
Location: Midwest

Re: Disheartened, having problems

Postby Cj51 » Sat Aug 29, 2015 6:33 pm

Judy, I'm so, so happy to hear that you got a competent WOCN! As others have said, they are worth their weight in gold. It sounds like you are finally on the right track! All the best to you!

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
4/2020 NED

Momto5boyz
Posts: 33
Joined: Wed Jul 08, 2015 12:54 am

Re: Disheartened, having problems

Postby Momto5boyz » Sun Aug 30, 2015 11:08 pm

I am also so sorry your having so many issues... Sometimes I have to change bags daily, but for me it's because my stoma is a innie.
What works for me is remove the bag and take a warm shower. Start placing your brava mold able ring on the back of your coloplast pre cut to your size bag. Use the hair dryer to warm them up. Then put powder on your stoma. Use dryer to blow off excess and warm up belly. Use cavilon no sting barrier wiped to wipe where appliance sticks at, this will make removing a breeze and so much less painful. Place your warm bag on and hold tight put on your brava barrier strips on each side where you get most of your leaks. Add your lubricating deoderant to bag and then go lay down on your back for fifteen min while holdin the bag firmly stuck down with the warmth of your hands.
When removing bag use sensi-care pads to remove adhesive with out adding any additional discomfort. If I get really sore sometimes at night I will change bag and apply desiton to the stoma area, it's greasy so that bag will begin to lift , I just make sure to top it with powder to help. Keep it on at least overnight to help heal that skin. I hope this made sense to you.
Good luck!
12/14/13. Went to ER for stomach cramps :stage 4A colon cancer.
12/15/13 Had large tumor removed from colon and colostomy.
1/14 port put in
2/14 FOLFOX with Avastin 12 cycles.
8/25/14 liver res.
10/14 liver radiation/ Xeloda.
11/14 liver ablation
12/14 CEA rising to 7.2 from 2.4. ctscan shows positive cancer cells near ablation site and margin.
2/15 12 cycles of FOLFIRI with erbitux
7/15 CEA 1.4 ctscan shows stable with no progression.
8/15 CEA 1.4. Reversal scheduled for 9/10/15

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

Re: Disheartened, having problems

Postby JudeD59 » Thu Sep 03, 2015 12:04 am

Just an update for everyone who was kind enough to reply with support and helpful tips--

I saw the surgeon Tuesday about the open incision. He was pleased with how well it is healing and wants us to continue packing it daily. He doesn't think a wound vac is necessary. I'll go back to see him at the end of the month to see if I can be cleared to start chemo.

My stoma situation is still a work in progress. It isn't as raw and sore as it was, but it isn't great either. We're still experimenting with different bags. The Coloplast bags don't work for me at all---too heavy and rubbery. I'm using ConvaTec two piece esteem synergy convex right now. The wafer stays on pretty well and it's lighter than the Coloplast ones, but it's hard sticking the bag onto the wafer just right. If it isn't square, I get leaks, not under the wafer but between the wafer and the bag. I think I just need more practice. I like the two piece because I can put the wafer on and work the moldable seal easily before attaching the bag. I have a perfectly round protruding stoma, but it has a hole in one side that leaks and then it has a flat area attached to it that extends about an inch below the rest of the stoma.

The good WOCN nurse put tiny medicine covered pieces of gauze into the open sores when she was here and left step by step instructions for the next nurse to follow. Of course, that nurse had no idea what she was doing and said she couldn't put the medicine on because it wasn't in the doctor's orders. She did a horrible job of putting the bag on and never even closed the bottom. Luckily, I saw it right before I stood up so no mess spilled out onto the floor. It started leaking a couple of hours later and was covered in blood when I took it off. Now, I don't let any of the nurses change it unless I happen to get lucky enough to get Beth Ann, who is the good WOCN nurse. We have a local office with WOCN nurses where I went to get the stoma sited and they said to call if I have problems. I'll probably call and set up an appointment with them. Until I can go a day without leaks and walk without pinching and pain, I can't have any semblance of a normal life, so I need some answers.

Again, thank you for all your replies and advice. I'm still having problems, but I'm not as disheartened. I know I'll eventually figure out the best system for me, even if I have to do it on my own.

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

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

Re: Disheartened, having problems

Postby cathy123 » Thu Sep 03, 2015 6:04 am

I've been thinking about you Judy. Glad you are making some progress.

I used the esteem bag a few times and had the same problem with it leaking between the adhesive seals after a day or two. They make that exact bag with a regular "Tupperware style" connection which is what I use now with no leaks at all. The only problem is that the seal doesn't stick out like some of the other ones so you really have to press down on your stomach to snap it together which could be difficult until you are healed.
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 » Thu Sep 03, 2015 11:06 am

cathy123 wrote:I've been thinking about you Judy. Glad you are making some progress.

I used the esteem bag a few times and had the same problem with it leaking between the adhesive seals after a day or two. They make that exact bag with a regular "Tupperware style" connection which is what I use now with no leaks at all. The only problem is that the seal doesn't stick out like some of the other ones so you really have to press down on your stomach to snap it together which could be difficult until you are healed.



Thanks, Cathy. Is that the Sure fit Natura ones because I can only find the adhesive ones in the Esteem Synergy line.

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


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