Facing a permanent stoma

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AppleTree
Posts: 153
Joined: Fri Mar 18, 2016 8:16 am

Re: Facing a permanent stoma

Postby AppleTree » Wed Jan 03, 2018 6:01 pm

After the surgery, there is still fecal matter that will come out of your rectum. Wear Depends until it passes. I wish someone told me that!
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
March 14 - April 16 - 25 sessions
Tumor shrunk just over 50% Lymph nodes 0/13
Operation to remove rectum with temp Ileo June 17
Reversal July 20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
June 16, MRI shadow in lung
Pet scan - 6.6mm Met in Upper right lobe
July 30 VAT surgery Mass General/Boston
August 24 port installed
August 30 Folfox

Lee
Posts: 5458
Joined: Sun Apr 16, 2006 4:09 pm

Re: Facing a permanent stoma

Postby Lee » Wed Jan 03, 2018 6:21 pm

AppleTree wrote:After the surgery, there is still fecal matter that will come out of your rectum. Wear Depends until it passes. I wish someone told me that!


I think that only happens when you have a temporary ileo. With a permanent stoma/colostomy. Rectum is completely removed, nothing to hook up to. Tail bone is sewed up. Thus I have a Barbie Butt 8)

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 - 10 years and counting!

NHMike
Posts: 960
Joined: Fri Jul 21, 2017 3:43 am

Re: Facing a permanent stoma

Postby NHMike » Wed Jan 03, 2018 6:53 pm

AppleTree wrote:After the surgery, there is still fecal matter that will come out of your rectum. Wear Depends until it passes. I wish someone told me that!


I have seen mucous come out and that's one thing.

The fecal material is where stuff comes out of one side of the ileostomy and flows into the other side of the cut. It helps if the stuff drains to the bottom or the side of the bag but if it pools, then there's the potential for it to flow down to the anus. It can be a nuisance and yes, depends, can help. My approach is to sleep on my back at an angle to encourage the output not to pool around the stoma.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

BethD
Posts: 13
Joined: Sun Dec 17, 2017 8:58 pm

Re: Facing a permanent stoma

Postby BethD » Wed Jan 03, 2018 8:13 pm

Yes thank you for all the replies. & thank you Lee. I'm able to see the silver lining. I'm alive and I'm getting a little bit better everyday.
I feel very grateful and fortunate to be in the care of UCSF. I verified that my surgeon is board certified. She is the Chief of Colorectal Surgery.
My nurse said I will have the Barbie butt.

Surgery date is right around the corner. I had hoped to avoid surgery altogether. I went to UCSF to participate in an OPERA study to see surgery could be avoided. Long story short, my oncologist, radiologist and surgeon recommend the surgery so here we are. I trust my team at UCSF and this is the next step on the path.

But at the same time, it's hard to accept what the next few weeks and months will bring. I was in so much pain a year ago and I'm already feeling so much better, better than I have in two years. I had problems with abdominal pain, bleeding and constipation a year ago, but since my first chemo in April, I've felt better. I didn't have problems any problems with chemo. Radiation was a little tougher, especially at the end, but I don't have any issues with urgency or loss of control. I work as an independent contractor and I've been working throughout.

These days I'm pooping like a champ. I'm really glad to be feeling better. It would be nice to just go on like this and not have to take another big step. I really wish I could avoid the surgery. So I have second thoughts about it. But it's not worth taking the risk of leaving this cancer inside me. I'll do the surgery and look forward to many more good days and a better long term chance of survival.

The nurse marked a circle on my left side that seems to be in a good spot and sent me home with an ostomy home skills kit and stoma practice model.

talk to you soon
Beth
42
Dx: Feb 2017 RC 2 cm from AV
Stage 3a
Laparascopic with colostomy
Radiation Oct/Nov 2017
Chemotherapy

Lee
Posts: 5458
Joined: Sun Apr 16, 2006 4:09 pm

Re: Facing a permanent stoma

Postby Lee » Thu Jan 04, 2018 11:27 am

BethD wrote:Yes thank you for all the replies. & thank you Lee. I'm able to see the silver lining. I'm alive and I'm getting a little bit better everyday.
I feel very grateful and fortunate to be in the care of UCSF. I verified that my surgeon is board certified. She is the Chief of Colorectal Surgery.
My nurse said I will have the Barbie butt.

talk to you soon
Beth


There is a learning curve in the beginning, butt in no time it will become 2nd nature to you. I think a lot depends on your mental acceptance of the bag. For me I wanted it. When I went to see the Ostomy nurse for the 1st time, they also wanted my husband there and we both learned about the colostomy bag. When we left, DH said I will support you in what ever decision you make, butt after all you've been through (bathroom issues), it good to know you've got options, butt mostly you can get your life back with that bag. I knew I wanted the bag.

If problems do come up, those Ostomy nurses are worth their weight in gold. And that other site is also a wealth of information. You are not alone here.

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 - 10 years and counting!

User avatar
GreenLakeGirl
Posts: 763
Joined: Mon Jan 18, 2010 5:55 am
Location: Pacific NW

Re: Facing a permanent stoma

Postby GreenLakeGirl » Thu Jan 04, 2018 9:45 pm

Varma is awesome. I don't think you can go wrong with her background in pelvic surgery. A friend of mine had her colostomy done by Varma (I think), and it's quite lovely. :)
2009, age 37 with a 2yo: CC, IIIB (T4N1M0). IBD history
2010-11: FOLFOX, 12 rounds. 5 surgeries (3-step Ileal j-pouch, infection, VATS)
Currently NED.
Mom, you can go the hard way if you want, but the easy way is much easier. ~my 3yo

Aqx99
Posts: 353
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Facing a permanent stoma

Postby Aqx99 » Fri Jan 05, 2018 7:50 am

BethD wrote:Yes thank you for all the replies. & thank you Lee. I'm able to see the silver lining. I'm alive and I'm getting a little bit better everyday.
I feel very grateful and fortunate to be in the care of UCSF. I verified that my surgeon is board certified. She is the Chief of Colorectal Surgery.
My nurse said I will have the Barbie butt.

Surgery date is right around the corner. I had hoped to avoid surgery altogether. I went to UCSF to participate in an OPERA study to see surgery could be avoided. Long story short, my oncologist, radiologist and surgeon recommend the surgery so here we are. I trust my team at UCSF and this is the next step on the path.

But at the same time, it's hard to accept what the next few weeks and months will bring. I was in so much pain a year ago and I'm already feeling so much better, better than I have in two years. I had problems with abdominal pain, bleeding and constipation a year ago, but since my first chemo in April, I've felt better. I didn't have problems any problems with chemo. Radiation was a little tougher, especially at the end, but I don't have any issues with urgency or loss of control. I work as an independent contractor and I've been working throughout.

These days I'm pooping like a champ. I'm really glad to be feeling better. It would be nice to just go on like this and not have to take another big step. I really wish I could avoid the surgery. So I have second thoughts about it. But it's not worth taking the risk of leaving this cancer inside me. I'll do the surgery and look forward to many more good days and a better long term chance of survival.

The nurse marked a circle on my left side that seems to be in a good spot and sent me home with an ostomy home skills kit and stoma practice model.

talk to you soon
Beth


It is quite a change when you have a stoma. I have a temporary ileostomy and it took me a while to accept it. The first month or so, I cried every time I changed my pouch. It was also frustrating at first, trying to get the right system set up. It's good that they sent you home with learning materials and a practice model. That should help. My mantra the entire time I have had this ileostomy has been to remind myself that it is helping to save my life. Any time I feel down about it, when it decides to erupt right as I start a pouch change, etc. I just take a moment and think of what could be if I had not had the surgery. You are stronger than you think, you will make it through this and come out even stronger on the other side. I would like to suggest that you check into talking with an oncology counselor. This is a major change in your life and it might help to talk with someone trained to help people through cancer treatment and the effects it has on the body. I have been seeing the oncology counselor at my cancer center for several months and she has helped me immensely.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Diagnosis, Age 39
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Diagnosed w/ovarian cancer
9/6/17 CA 125 11.1 U/mL
11/27/17 CEA 2.6 ng/mL
12/5/17 CT showed NED
12/13/17 CEA 2.9 ng/mL
1/11/18 CA 125 8.6 U/mL
1/23/18 Reversal

NHMike
Posts: 960
Joined: Fri Jul 21, 2017 3:43 am

Re: Facing a permanent stoma

Postby NHMike » Fri Jan 05, 2018 8:34 am

Aqx99 wrote:It is quite a change when you have a stoma. I have a temporary ileostomy and it took me a while to accept it. The first month or so, I cried every time I changed my pouch. It was also frustrating at first, trying to get the right system set up. It's good that they sent you home with learning materials and a practice model. That should help. My mantra the entire time I have had this ileostomy has been to remind myself that it is helping to save my life. Any time I feel down about it, when it decides to erupt right as I start a pouch change, etc. I just take a moment and think of what could be if I had not had the surgery. You are stronger than you think, you will make it through this and come out even stronger on the other side. I would like to suggest that you check into talking with an oncology counselor. This is a major change in your life and it might help to talk with someone trained to help people through cancer treatment and the effects it has on the body. I have been seeing the oncology counselor at my cancer center for several months and she has helped me immensely.


I found the stoma quite challenging for two months (so it's still somewhat challenging). My hospital did the following which helped a lot:

- Preop meeting one week before surgery: the WOC nurse measured me and showed me the products and talked about them in general. Way too much information to absorb in one setting.
- WOC nurse came in the day after surgery and went over it again. That helped me retain a bit more. I had some help changing it the day after surgery as well and then I took it from there.
- Four days after surgery, a floor nurse showed me how to change the bag and sent me home with a package of 9 wafers, 9 bags, ostomy paste, barrier wipes and templates. I did not feel confident at all with this. The WOC nurse made an appointment for ten days after discharge but it was move to three weeks later. I didn't realize the implications of this until the second meeting. In the second meeting, she showed me a better system. If that had been three weeks ago, things would have been a lot easier.

Some notes off the top of my head:

- It took me several times before I got more efficient at changing the bag and fear of changing the bag meant that I left it on for five days. This resulted in leaks and damaged and painful skin.
- Product discovery is challenging because I just wanted to keep doing what I had done (or the WOC nurse had done) before. I also have had problems ordering and seeing the company follow through. Fortunately I have one order and about 6 weeks of stuff. I'm still waiting for my second order though.
- There is so much to deal with after surgery that the illeostomy is just one additional thing to worry about.
- Coloplast sent me a travel bag with samples and I put it to good use on a trip. I haven't had to change the bag yet - but will - for the first time, away from home.
- It helps a ton to have a spouse help change the bag.
- Handicapped bathrooms are great.
- Information about how to change specific systems are hard to find and often don't have all of the details. I spent a lot of time looking for videos or directions on the web and it wasn't optimal. The best demonstration is with a WOC nurse.
- I had visiting nurses for a week but they discontinue them after return to work. I returned to work two weeks after surgery. The visiting nurses didn't really understand ostomies. I asked them to order supplies for me stating what I had and she ordered Colostomy supplies for me instead of illeostomy supplies. So I had to return the Colostomy stuff and figure out how to order the Illeostomy supplies. Fortunately I know how to do it now. I've had problems ordering the second round and I wanted it done three weeks ago and have to call again to get a progress report. The time of year (holidays), weather (big snowstorm in the east) and shipping delays don't help.

But I'm getting better and better at dealing with it with help from folks here.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

heiders33
Posts: 114
Joined: Sat Nov 04, 2017 11:08 am

Re: Facing a permanent stoma

Postby heiders33 » Fri Jan 05, 2018 9:21 am

I had major problems in December with leaks and blowouts. Fortunately I called my ostomy nurse and changed my system which seems to be working (for now). I have read that temp ileostomies are much harder to manage than permanent ileostomies or colostomies because of the high level of caustic output, since the stoma is created out of the loop of the ileum rather than the end. If I had to get a permanent colostomy I think I could manage it much better.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, no genetic mutations
June-July 2017: 28 days of chemo/radiation
September 2017: LAR surgery with loop ileostomy
October 2017 - February 2018: six rounds of mop-up XELOX
March 12, 2018: reversal

NHMike
Posts: 960
Joined: Fri Jul 21, 2017 3:43 am

Re: Facing a permanent stoma

Postby NHMike » Fri Jan 05, 2018 9:28 am

heiders33 wrote:I had major problems in December with leaks and blowouts. Fortunately I called my ostomy nurse and changed my system which seems to be working (for now). I have read that temp ileostomies are much harder to manage than permanent ileostomies or colostomies because of the high level of caustic output, since the stoma is created out of the loop of the ileum rather than the end. If I had to get a permanent colostomy I think I could manage it much better.


There are so many products and so many ancillary products that it's confusing.

I found that I like using Cavilon Spray, and Covatec Powder. The Spray isn't covered by insurance and it's $9 for a small bottle but I'm fine paying for it out of pocket as it is so convenient and fast compared to the wipes. There were a few people giving me suggestions on products but it is pretty confusing if you've never used them and you don't know how to apply them and you don't know exactly what they do or how they work. I took the suggestions to the WOC nurse and she demonstrated these products for me so I was able to do it myself afterwards.

So, yes, it's a tough process.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

Lee
Posts: 5458
Joined: Sun Apr 16, 2006 4:09 pm

Re: Facing a permanent stoma

Postby Lee » Fri Jan 05, 2018 9:49 am

heiders33 wrote:I had major problems in December with leaks and blowouts. Fortunately I called my ostomy nurse and changed my system which seems to be working (for now). I have read that temp ileostomies are much harder to manage than permanent ileostomies or colostomies because of the high level of caustic output, since the stoma is created out of the loop of the ileum rather than the end. If I had to get a permanent colostomy I think I could manage it much better.


Wow, interesting! I did not have nearly the issues that have been described in this thread. Maybe because I had blow outs almost on a daily bases prior to my surgery (ie did not make it to the bathroom in time). My worst day, I messed in two bathrooms, a shower and the hallway before I got things under control. Thus the stoma was nothing. When I went home following my surgery, the nurse changed my wafer the first time, I was changing it the 2nd time, and have done so ever since. Believe me, my stoma is FAR easier than what I was dealing with prior to my surgery.

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 - 10 years and counting!

User avatar
Atoq
Posts: 103
Joined: Wed Oct 25, 2017 9:31 am

Re: Facing a permanent stoma

Postby Atoq » Fri Jan 05, 2018 10:49 am

heiders33 wrote:I had major problems in December with leaks and blowouts. Fortunately I called my ostomy nurse and changed my system which seems to be working (for now). I have read that temp ileostomies are much harder to manage than permanent ileostomies or colostomies because of the high level of caustic output, since the stoma is created out of the loop of the ileum rather than the end. If I had to get a permanent colostomy I think I could manage it much better.


I have a temporary loop colostomy and it is very easy to manage, the output is pretty much like the final one and it comes out almost on a predictable pattern. I think is fashinating that our body can still work so well when moving its parts around :)

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, histerectomy, ileostomy

heiders33
Posts: 114
Joined: Sat Nov 04, 2017 11:08 am

Re: Facing a permanent stoma

Postby heiders33 » Fri Jan 05, 2018 11:13 am

I would think if the output is more solid coming out of the perm colostomy or ileostomy, it would be much easier to manage. My problems are all related to the liquidity of my output. I almost wish I could have a temp colostomy, although I realize that's not possible since my colon is healing from surgery.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, no genetic mutations
June-July 2017: 28 days of chemo/radiation
September 2017: LAR surgery with loop ileostomy
October 2017 - February 2018: six rounds of mop-up XELOX
March 12, 2018: reversal

NHMike
Posts: 960
Joined: Fri Jul 21, 2017 3:43 am

Re: Facing a permanent stoma

Postby NHMike » Fri Jan 05, 2018 11:20 am

heiders33 wrote:I would think if the output is more solid coming out of the perm colostomy or ileostomy, it would be much easier to manage. My problems are all related to the liquidity of my output. I almost wish I could have a temp colostomy, although I realize that's not possible since my colon is healing from surgery.


The body reabsorbs water from the large intestine with a colostomy and nutrients are better absorbed as well. The illestomy is harder to manage if it's liquidy. The nurses recommend more fiber and Immodium to firm the output. If it is liquidy, though, you need lots of water and electrolytes on a regular basis and there's more potential for stinging. I find that the Cavilon Spray along with the convex wafer helps a lot with my stoma landscape.

I want to try the Coloplast Mio as well as the design looks pretty good. Just need directions or video examples.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

mhf1986
Posts: 96
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Facing a permanent stoma

Postby mhf1986 » Fri Jan 05, 2018 8:19 pm

DH switched to the Coloplast Sensura Mio Clic about a year ago. Made a huge difference in his QOL when he didn't have to empty. They are very easy to use: put on a ring if you want, the base plate (cut hole to size as usual), and add the matching size pouch. It's similar to a tupperware "pop" or "clic" when the pouch is attached. You can practice on the bathroom counter first. Then slide the 2 tiny locking keys together until you hear another clic. I think there are videos online to see on the Coloplast site. Unclic pouch as needed and toss (we use Cardinal disposal ziploc bags). Replace base plate every few days.

The trick seems to be getting the right size base plate and matching pouch. The Edgepark site is a bit confusing about what matches with what. Just match up your numbers. DH is using the 50 with a 50 midi pouch. The 50 maxi pouch is longer. We tried 40 and 60 sets and those were too little/big. If the flange says "precut", it can still be cut slightly larger, you don't have to leave it as is. The grey pouch also feels less plastic-y.

The new Brava ring seals and 1/2 round barrier strips are helpful too.

M

PS No I don't work for Coloplast, I just get samples of everything to help DH! I also don't know if these products work for ileostomy as DH has a colostomy.
Caregiver to DH, dx age 50, mets to liver/lungs, MSS, quad wild
10/16: hemicolectomy (descending), perm. colostomy, CEA 114
11/16: port in, then FOLFOX + Avastin
4/17: CEA 11
6/17: CEA 15, OX discontinued for now due to neuropathy
11/17: CEA 38, change to CAPOX+A
12/17: CEA 29
2/18: CT scan stable, CAPOX no fun, back to FOLFOX+A


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