Facing a permanent stoma

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

Facing a permanent stoma

Postby BethD » Wed Dec 27, 2017 2:45 pm

Hello friends
I have an upcoming Stoma Marking appointment to prepare for my permanent colostomy.

Surgery date January 2018 at UCSF

What questions should I ask my surgical team? What do you wish you had known earlier or asked about sooner? I really appreciate any tips or experiences you can share.

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

mhf1986
Posts: 139
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Facing a permanent stoma

Postby mhf1986 » Wed Dec 27, 2017 7:13 pm

Figure out where your clothes' waistbands are! DH had an emergency stoma after a leak and unfortunately it's right where he wears his belt. So now he hikes up his pants above that and says he feels like a caricature of an old man. Sweats are more comfortable for him but he's not a fan of the style.

Where do you bend? How do you like to sit? Where does your car seat belt hit? Can they put a pouch on you now to see if that site works when sitting?

When they review pouching systems, check out all the brands/styles. What he went home with from the hospital didn't work well for him so we experimented.

Best wishes! M
Caregiver to DH, dx @ 50, mets to liver/lungs/lymphs, MSS, quad wild
9/16 CEA 114, partial blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
4/17 CEA 11
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX caused hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth/ascites; change to Vectibex + 66% Irinotecan dose
9/18 CEA 31, shrinkage/no ascites

Soccermom2boys
Posts: 189
Joined: Tue Nov 10, 2015 10:29 pm

Re: Facing a permanent stoma

Postby Soccermom2boys » Thu Dec 28, 2017 12:46 am

mhf1986 wrote:Figure out where your clothes' waistbands are!


She is right on the money! I would honestly suggest you take in a few clothing items to try and see. When we were marking for mine we had a few spots I was deciding between and I wish I had chosen mine about a half inch lower because I too feel like the waistline of many of my clothes tends to fall right where the ostomy is. It’s not catastrophic, I have worked around it ok, but that half an inch would have made it just a tad easier/more convenient. Also, tape one on to you at that appointment so you also get a feel for how low it may hang as you may want the ostomy to sit higher if you don’t want the pouch to fall so low it bothers you how it touches your groin area in general. One other thought, keep in mind the distance from your bellybutton as the wafer itself is wider so you want the edge of the wafer to not hit the crease area by your belly button and potentially compromise the seal it maintains with your abdomen. And like M said, these pouches come in all sorts of sizes and varieties and each have their own unique feel on your body so experiment if what they give you at the hospital is not working for you. Although I do know of people who stick with what they got from the hospital because it worked and they were satisfied. And less is more, don’t over complicate what all you may need for your pouch to adhere. Good luck with both your surgery and the colostomy!
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

hawkowl
Posts: 111
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: Facing a permanent stoma

Postby hawkowl » Thu Dec 28, 2017 1:42 am

I also agree: location, location, location! And find out how to get samples so you can try out different brands and styles. I wished I had been warned more about hernias; I would have purchased a lift chair sooner.

Mostly don't worry about the ostomy. For me it is no big deal and doesn't limit me one bit. I can travel, exercise, swim...no limits, and no worrying about bathrooms!
Dx 12/2014 T3N2MX (iliac nodes) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7
10/2017 CEA remains in normal range (1.4), scans stable.
6/2018 CEA still normal.

Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

NHMike
Posts: 1676
Joined: Fri Jul 21, 2017 3:43 am

Re: Facing a permanent stoma

Postby NHMike » Thu Dec 28, 2017 6:22 am

I have an ileostomy but location is important. I have to wear larger pants because the waistband is pushed lower by the pouching system so pants look a little saggy.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

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CaliforniaBagMan
Posts: 328
Joined: Wed Oct 14, 2009 6:05 pm
Location: California

Re: Facing a permanent stoma

Postby CaliforniaBagMan » Thu Dec 28, 2017 12:34 pm

The most important thing is to realize *you* must be the quarterback on where this gets marked. You take input from others, then make decisions. Sorry if that sounds obvious but it is important.

I went for stoma marking only doing an average amount of research. So the nurse did marking, using a tattoo which I found painful and not necessary. Others had external markings with a felt pen only.

After I was marked, I had my surgeon look at it and he said: "no way." He knew my body and what was likely to be expected during surgery. He said where the nurse marked was no good. Agghh.

I did not do any testing while wearing ostomy applicances before being marked. Neither for the first or second marking. I should have done that, but oh well. Things mostly worked out OK, but not ideal. For good results you must try wearing an appliance with some contents in it.

I would get some two-piece appliance systems, with a separate "flange" or "wafer" that attaches to you, and a pouch that snaps onto that. I use Hollister 14704 flange, and Hollister 18392 pouch. If time is short, a pharmacy in your local area likely stocks them, or equivalents. If you can't get them locally, PM me (although I am rarely on here.)

Install the flange in a "diamond shape." Most new users apply it like a picture frame, with sides straight up and down. Experienced users use a diamond shape, with sides at a diagonal. Cut or shave the hair from your skin (if any!) before applying the flange. After the flange is secure to your skin, get the pouch ready. Fill it modestly with 1/4 or 1/3 full of applesauce. Don't overdo it, as most people change a pouch before it gets too full. (Later, for fun, make it really full, re-apply, get dressed, and see how unwieldy that can get .....) (Try rolling over in bed with a mostly full pouch just for fun ... but maybe put plastic down first!!!)

Now get dressed, with normal clothing and maybe try tight fitting clothing which is the most problematic. Be sure to wear a belt. Go sit in some chairs, bend over to pick items up off the floor, get in your car and put on the seat belt, try lifting and carrying a large heavy package, etc. Look for conflicts where the contents gets squeezed or moves around, or a belt or seat belt crosses the area of the opening. Those are best avoided, by locating the flange up/down/to the side. If the contents are getting squeezed, etc., this is at some point going to cause a leak. Ostomy veterans due everything possible to not have a leak. For obvious reasons.

You might consider having your surgeon mark a large area where an opening can be created. Then do your testing. Then tell your stoma marking person where to mark.

Finally, remove the pouch that has contents. Now apply a completely empty pouch. Do all the same things with clothing and tests. Notice how different and simpler things are when there are no contents in the pouch. Ten years into this, I almost never accept having any contents in the pouch. In the early days, I paid out-of-pocket for so many excess supplies that I could change things whenever I wanted to with no worry of running out. And, I started doing irrigation.

It's too early now for irrigation, but I would definitely recommend looking into that after a post-surgery interval. For me, each morning I infuse a bag of warm water into my colon. That stimulates *everything* to come out. At least mostly everything. It's not 100% foolproof but maybe 95%. When it works as it should, you have one bathroom visit (maybe an hour) per day, then an empty pouch the rest of the day and night. Very convenient.

You will also find that dealing with "gas" can cause unexpected issues. Like being in a quiet room with others, and having gas come out. It's not as controllable as before. Diet and irrigation can work wonders to reduce the ..... surprises.

Another suggestion is to ask your surgeon *not* to create a flush stoma. You want at least a slight protrusion outside your body; otherwise, you will constantly fight skin irritation and regret it. (Ask me how I know!) It's not a huge deal, and it can be handled, but it's better *not* to have to deal with that at all.

Lastly, be prepared for some anguish at first. In the beginning, some things seem weird and abnormal. It's not a huge deal, just something new and different. And sometimes smelly. And there will be leaks and accidents. Try to keep the perspective that the early days are the "learning curve." At some point you will transition to be a veteran that is comfortable with all aspects of this. For many of us, an ostomy either saved a life or transitioned from poor bowel control to a more manageable life. My experience with all of this has been positive-- it's a new normal, and things work smoothly once you get over the opening jitters and concerns.
CT guided biopsy on mass - still NED !!!
CT scan finds new 2x3cm mass on 10/09
APR surgery 11/07; NED thereafter
Folfox/radiation 9/07-10/07
DX Stage III rectal cancer 7/07

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Atoq
Posts: 300
Joined: Wed Oct 25, 2017 9:31 am

Re: Facing a permanent stoma

Postby Atoq » Thu Dec 28, 2017 1:02 pm

I got a colostomy because of blockage three weeks ago and the surgeon made the mark in a hurry with me sitting on the bed. Still it was a good plan, the only thing is that I have to cut the adhesive part of the bag that is covering the surgery scar. The colostomy is no problem for me to have. It is still temporary but, after trying it, the permanent option does not scare me anymore.

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

NHMike
Posts: 1676
Joined: Fri Jul 21, 2017 3:43 am

Re: Facing a permanent stoma

Postby NHMike » Thu Dec 28, 2017 2:02 pm

Atoq wrote:I got a colostomy because of blockage three weeks ago and the surgeon made the mark in a hurry with me sitting on the bed. Still it was a good plan, the only thing is that I have to cut the adhesive part of the bag that is covering the surgery scar. The colostomy is no problem for me to have. It is still temporary but, after trying it, the permanent option does not scare me anymore.

Claudia


I had the issue of the wafer tape covering the bandage on the scar. So I used bandaids to cover the scar and put the wafer tape over the bandaids. That did work but I had to change the bandaids every time I changed the bag. Fortunately it was okay after a few weeks. The wafer itself would be a different story I think.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

User avatar
CaliforniaBagMan
Posts: 328
Joined: Wed Oct 14, 2009 6:05 pm
Location: California

Re: Facing a permanent stoma

Postby CaliforniaBagMan » Thu Dec 28, 2017 2:19 pm

The immediate post-surgery time is a challenge.

Surrounding tissue is wounded, and you need to adhere to it, or very close. The band-aid approach seems good. I just gritted through with the wafer only, wish I had thought of the band-aid.

Once you are past the wounded tissue, another trick is to heat the wafer with a blow dryer before applying. It can make the difference between a so-so seal and a good one. But not probably something to do immediately post-surgery. You kind of want a minimal adhesion near the wounded tissue.
CT guided biopsy on mass - still NED !!!
CT scan finds new 2x3cm mass on 10/09
APR surgery 11/07; NED thereafter
Folfox/radiation 9/07-10/07
DX Stage III rectal cancer 7/07

hawkowl
Posts: 111
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: Facing a permanent stoma

Postby hawkowl » Thu Dec 28, 2017 7:29 pm

I like the idea of "wearing" a bag filled with applesauce to give you a better idea of what to expect!

Everyone is different when it comes to bag choices/clothing. I am a big fan of ostomy secrets wraps because I am very active and don't like the bag swinging back and forth, and don't want to worry about the bag getting snagged. I do like a layer of fabric between my skin and the bag (again I am very active and live in a hot and humid climate; just feels better).

Wearing the bag "diamond" or "picture frame" is a matter of personal preference. I much prefer "picture frame" personally but do like to mix it up a bit. And although this probably doesn't apply to you...if you have a hairy torso, definitely ask about laser hair removal. My insurance actually pays for it (with prior approval), it is quick and virtually painless, and has increased my wear time from 1-2 days to a week or more. And no more shaving (you would definitely need to wait at least 6 weeks before any treatments however).

Make sure you remember to chew chew chew and hydrate hydrate hydrate. At this point I can eat almost anything, although I avoid starchy foods (constipating) and gas producing foods (just makes life easier).

I tried irrigation but found it way more time consuming than just emptying the bag as needed (1-2 times a day, takes me a total of less than 5 minutes vs 30-60 minutes for irrigation) but you should definitely give it a try...many people swear by it!
Dx 12/2014 T3N2MX (iliac nodes) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7
10/2017 CEA remains in normal range (1.4), scans stable.
6/2018 CEA still normal.

Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

User avatar
Atoq
Posts: 300
Joined: Wed Oct 25, 2017 9:31 am

Re: Facing a permanent stoma

Postby Atoq » Sat Dec 30, 2017 1:18 pm

I found this article which I thought was interesting about how to avoid hernia and prepare for surgery:

http://www.stomadata.com/Minimising_the ... Hernia.pdf

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

Eleda
Posts: 152
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Facing a permanent stoma

Postby Eleda » Tue Jan 02, 2018 7:20 am

Beth I'm sort I'm of no help in this regard but can I please ask why u have to have a permanent colostomy???
I seem to have similar stage Rectal cancer 2.5/3 cm AV, And still hopful of the resection and connection again afterwards
Thanks Adele
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

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

Re: Facing a permanent stoma

Postby BethD » Tue Jan 02, 2018 10:10 pm

Hi Adele
I'm still coming around to the idea. I had initially hoped to avoid surgery altogether, and planned on having a resection connection.

I've done chemo and radiation with the intention to shrink my tumor enough to give my surgeon a bit more margin to work with. The tumor did shrink quite a bit, but I guess I still don't have enough margin.

My surgeon thinks my quality of life will be better and I'll avoid years of diapers if I go for the permanent colostomy.

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

Eleda
Posts: 152
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Facing a permanent stoma

Postby Eleda » Tue Jan 02, 2018 11:17 pm

Thanks for ur reply Beth, in n the same position,,, starting radiation tomorrow, well today now as its 4.15 am lol,
I think I'm willing to take the chance if it shrinks and if it doesn't work then I'll go for the other at a, later stage
I will have a temp one anyway for 6 months while the resection heals and prob finish off adjuvant chemo
Adele
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

Lee
Posts: 5666
Joined: Sun Apr 16, 2006 4:09 pm

Re: Facing a permanent stoma

Postby Lee » Wed Jan 03, 2018 5:17 pm

BethD wrote:Hi Adele
My surgeon thinks my quality of life will be better and I'll avoid years of diapers if I go for the permanent colostomy.
talk to you soon
Beth


Your surgeon is probably right. Am I correct to assume surgeon is a board certified colon rectal surgeon. They have the extra training for this type of surgery (rectal).

I have a permanent stoma, and it has not held me back. If anything it gave me my life back. Radiation destroyed 2/3 of my rectal muscles thus I was tied to toilet for hours anytime I ate. Only solution was to wait until I was home for day before eating anything. Surgeon was willing to take muscles from some other part of my body, train them for 2 yrs. Goals was to get to 3 BM a day, butt could be living with 20+ BM a day. Gee I was already there. Surgeon had me see a Ostomy nurse and that is when I learned about a colostomy. I went into my surgery knowing I would have a permanent colostomy. My decision.

There are many people out there who have these colostomy and you would never know it. Many are famous people. There are many reasons for getting a colostomy. For many people, bowel issues have negatively effect their lives (not just cancer), getting a colostomy gave them their lives back. There have been a few people through the years here who had the reversal only to turn around and get their colostomy back simply because of multiple bathroom issues.

Me, I can be out all day and not worry where the nearest bathroom is. I can eat what I want and not worry how certain foods will effect my bowels. I've played in the ocean for many years with my bag and have gone horse riding with out problems. When my kids were younger, I was the mom that went on the field trips.

There is another site you might want to check out. They are a lot like us, The United Ostomy Assocaition of America. Click on the link below to get you there.

https://www.uoaa.org/forum/index.php?si ... 0ef660f3f0

If you have any questions, let me know. I am more than happy to answer them.

Good luck,

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!


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