APR, Stoma, Permanent Colostomy, Oh My!

Please feel free to read, share your thoughts, your stories and connect with others!
roadrunner
Posts: 512
Joined: Sun Jan 12, 2020 8:46 pm

APR, Stoma, Permanent Colostomy, Oh My!

Postby roadrunner » Mon Sep 09, 2024 11:06 am

[Posted this a couple of minutes ago on the STAGE IV thread, but re-posting in a new thread because of the ostomy angle. Enjoy!]

So to keep it as short as possible, after my LUL lobectomy in July of ‘23, I worked back up to running 2-3 miles 4-5 times a week, with life otherwise normal. I knew, however, that I had a small tumor in my rectum, likely a lymph node that had somehow survived the original CRT. So I started FOLFOX again in February of this year, and did 5 more cycles of chemo, for 13 FOLFOX total (though some minor Oxi reductions meant I didn’t have 13 Oxi cycles—I do have some minor numbness in my feet these days). The tumor responded, CEA back to normal and stable to slight reduction in size. I had a choice of TME or APR, but my surgeon and I both heavily favored APR, so there wasn’t much debate. There was just too much accumulated damage to my rectum (which I really shouldn’t have had anymore, anyhow), so incontinence would have been likely. I’ll admit I was pretty freaked out about the surgery.

Did the APR in late June. So here’s the thing: it was a reasonably tough surgery, and I even had to go back in the hospital briefly for an infection (likely viral), but overall it was smooth sailing and no biggie. Ok, now get ready for it—I would say the resulting stoma/ostomy is . . . no big deal. Just takes a little getting used to, but overall I’m loving life again and doing wonderfully with it. Just about to start real running again, though I’m already walking vigorously for long distances every day. Sitting (look up “Ken butt”/“Barbie butt” for those of the female persuasion) was fine after a month. The ostomy itself is kinda fun (I’ll admit I’m a different sort of guy, could care less about touching poo (which happens from time to time), and like technical challenges). Still figuring out optimal clothes and even some “appliance” optimization, but no real troubles. Feel 100%, at least, as usual, until my next scan! Have clambered back to NED for the moment.

So that’s the current update. Will answer any questions anybody may have about the ostomy side of things (there’s certainly much more to tell!), and feel free to PM me if you’d like. I may post this tale of woe ; ) in a separate thread as well [e.g., this one], in case anyone out there is considering this surgery. It seems very sad to me now that people get all freaked out by this. It is really nothing in the big scheme of things, or at least it’s been that way for me so far.

To close with a couple of anecdotes: Telling my 20-yr.-old son about the upcoming ostomy surgery while driving to his summer job in Maine back in June, and as it sinks in he turns to me with a mischevious grin and says: “You’ll have a last poo!” Never one to be upstaged, my riposte was “As will you, my friend. As will we all.” But seriously, my “last poo” was not memorable. Surgical prep. Would’ve liked to go out with something more impressive ; )

My 18-yr.-old is more of a tough guy, so I worked it into my dad duties, threatening to chase him around and rub the bag on him if he doesn’t clean up his messes. (It’s pretty much hermetically sealed, so not a real scary threat, but weird nonetheless ; ). But he didn’t really grasp the nature of the anatomical changes, as I discovered yesterday while watching football with him. We were chatting about it, and I said: “I can actually show you my intestine, if you’d like.” He demurred, fortunately, but suddenly got really confused. I explained how the stoma was created by pulling the descending colon through the abdominal wall. His eyes went wide and he said: “Wow! Crazy!” Then we went back to the game. I dunno, maybe it’s good to have boys!

Anyway, all good for now. Sorry for the long post, and, of course, YMMV. I wish everyone the best on these insane journeys.

[One framing note: I don’t mean to minimize any troubles folks may have had with this surgery or the resulting ostomy. I researched this *endlessly* (those of you who know me by my posts will not find that surprising), and so am well-aware of the many things that can crop up (some still may for me!). Just wanted this out there because there is so much fear and stigma around ostomy surgery and ostomy life. And that’s too bad. Also am happy to discuss it in detail if anyone wants/needs to.]
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20
Chest CT 3/30/21 growth 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy 7/7/23
5 cycles FOLFOX
APR 6/24. NED for now

Markdale
Posts: 117
Joined: Wed Dec 02, 2020 4:45 pm

Re: APR, Stoma, Permanent Colostomy, Oh My!

Postby Markdale » Tue Sep 10, 2024 8:44 am

It’s great you’re in good spirits roadrunner. Also glad the surgery was a success. Hope you’re back running soon and remain NED
09/20:Diagnosed colonoscopy
10/20: LAR tumour t3n2m1 4/24 lymph nodes.
11/20: pet scan confirmed Mets
11/20: folfoxiri - 10/6/21. 12 rounds in total
1/1/21 thoracotomy 1 met removed
2/2022 sabr to 2 lung nodule
09/22 PET scan progression of sabr’d nodules
10/22 phase 1 trial bispecific antibody
9/23 added pd1 blocker
12/23 bilateral VATS all visible (7) lesions removed
3/24 radiation to acromion bone met + chest lymph nodex
8/24 new pet positive lesions in lung and neck lymph nodes. Begin Folfiri.

roadrunner
Posts: 512
Joined: Sun Jan 12, 2020 8:46 pm

Re: APR, Stoma, Permanent Colostomy, Oh My!

Postby roadrunner » Tue Sep 10, 2024 2:45 pm

Thanks, Mark. Appreciate the support, it’s always helpful and welcome. I was trying to put something out there on my recent ostomy experience as well, as my personal experience is pretty out of sync with much of the negative, scary stuff out there.
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20
Chest CT 3/30/21 growth 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy 7/7/23
5 cycles FOLFOX
APR 6/24. NED for now

jts
Posts: 81
Joined: Sat Aug 24, 2019 3:07 pm

Re: APR, Stoma, Permanent Colostomy, Oh My!

Postby jts » Wed Sep 11, 2024 3:16 am

Hi roadrunner,
I'm glad that you are disease free and keeping active.

Did you have an ileostoma before? I was going to ask if having a colostomy is significantly different, or easier?

Thanks,
jts
Male 42 — stage IV RC
NRAS mutant - KRAS, BRAF wt
08/2019 DX 6 cm long tumor
09-10/2019 Chemo-radiation
12/2019 TME Surgery, clear margins, 7/16 nodes positive
Pathology: ypT3 ypN2b M0
01-06/2020 - FOLFOX
CEA only goes up during chemo: 2.4 --> 6.2
07/2020 6 mm tumor in lung, was growing fast during chemo
09/2020 VATS
01/2021 new 5mm cyst in liver, CEA continues to increase --> 8
06/2021 CEA down to 6. Cyst not visible anymore.
05/2023 CEA fluctuates between 4 and 6. Scans have been clear.

jts
Posts: 81
Joined: Sat Aug 24, 2019 3:07 pm

Re: APR, Stoma, Permanent Colostomy, Oh My!

Postby jts » Wed Sep 11, 2024 3:16 am

[double-post deleted]

utahgal7
Posts: 240
Joined: Fri Sep 11, 2020 12:04 pm

Re: APR, Stoma, Permanent Colostomy, Oh My!

Postby utahgal7 » Wed Sep 11, 2024 6:18 am

roadrunner,

It's good to hear that you are doing well after your surgery. I am glad that the adjustment to the colostomy seems to have been a smooth transition for you.

Best wishes,

Paige
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.8; 1.1; 1.0; 1.1; 1.7; 1.8; 1.8
1.9; 2.4; 2.3; 2.8; 2.2, 2.8, 3.2; 3.0; 1.6; 2.0; 1.2; 1.4; 1.2; 1.0
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy; ypT3N1bM0; MSS, KRAS G12A
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection
FOLFIRI 10 cycles
4/24 left brain craniotomy (RC met)

roadrunner
Posts: 512
Joined: Sun Jan 12, 2020 8:46 pm

Re: APR, Stoma, Permanent Colostomy, Oh My!

Postby roadrunner » Wed Sep 11, 2024 9:41 am

jts: I’ve never had an ileostomy. I never did the TME. When I got a ncCR to chemorad, I elected to do a trans-anal excision of the tumor bed. Thus I kept my rectum for five years. In the end, that didn’t preserve it, because cancer in one lymph node appears to have survived radiation unexpectedly. Because of damage from radiation, a couple of excision surgeries (one for a suspicious polyp), and my background circumstances (including potentially ibs), it was pretty clear to both me and my surgeon that a TME now would just lead to incontinence. Thus the APR/colostomy.

Of course, I know a ton about this now, so I can say the following: in general, ileostomies are regarded as more challenging than colostomies. This is true in part because you have to empty them more often (output is more liquid-y because earlier in digestion and more frequent), dehydration is more of a threat (same reason), and blockages are more common, which influences diet choices. Output is also more irritating to skin if you have leaks. However, it seems pretty clear that once you get past the technical/management aspects of these issues, the stigma is again the big thing for most folks, at least before they get the ostomy.

Nobody wants an ostomy of either sort, at least unless necessary, but both a colostomy and an ileostomy are clearly manageable, and you can lead a full, vital, 100% life with either. It just takes resilience, open-mindedness, and some additional work.
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20
Chest CT 3/30/21 growth 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy 7/7/23
5 cycles FOLFOX
APR 6/24. NED for now

User avatar
O Stoma Mia
Posts: 1721
Joined: Sat Jun 22, 2013 6:29 am
Location: On vacation.

Re: APR, Stoma, Permanent Colostomy, Oh My!

Postby O Stoma Mia » Wed Sep 11, 2024 10:47 am

roadrunner wrote: ... Of course, I know a ton about this now, so I can say the following: in general ileostomies are regarded as more challenging than colostomies. This is true in part because you have to empty them more often (output is more liquid-y because earlier in digestion and more frequent), dehydration is more of a threat (same reason), and blockages are more common, which influences diet choices. Output is also more irritating to skin if you have leaks. However, it seems pretty clear that once you get past the technical/ management aspects of these issues, the stigma is again the big thing for most folks, at least before they get the ostomy.

Nobody wants an ostomy of either sort, at least unless necessary, but both a colostomy and an ileostomy are clearly manageable, and you can lead a full, vital, 100% life with either. It just takes resilience, open-mindedness, and some additional work.

roadrunner wrote:... I was trying to put something out there on my recent ostomy experience as well, as my personal experience is pretty out of sync with much of the negative, scary stuff out there.

jts-
I've never had a permanent colostomy, but I had a temporary ileostomy for 6 months.

I agree with what roadrunner just said, in particular about ileostomies. Initially. I had all of the problems that he mentioned there but eventually I figured out how to manage everything, but just as I had everything under control it was then time to have my reversal surgery and to do away with the leaking ileostomy stoma bag forever.

In my opinion, once you have learned how to deal with the range of ostomy problems, it's basically smooth sailing afterwords.

If anyone wants to get a glimpse of what kinds of problems ostomates have to deal with, they can have a look at this article about stoma-bag leaks;

https://www.veganostomy.ca/ostomy-appliance-wont-stick/

Image

IDF108
Posts: 26
Joined: Wed Nov 16, 2022 4:23 am
Location: Massachusetts

Re: APR, Stoma, Permanent Colostomy, Oh My!

Postby IDF108 » Wed Sep 11, 2024 11:21 am

Roadrunner, man, admire your indomitable spirit and resilience!

User avatar
beach sunrise
Posts: 1139
Joined: Thu Mar 05, 2020 7:14 pm

Re: APR, Stoma, Permanent Colostomy, Oh My!

Postby beach sunrise » Thu Oct 10, 2024 11:58 pm

Hi Road runner, I am so happy to hear your surgery went well minus the infection.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

roadrunner
Posts: 512
Joined: Sun Jan 12, 2020 8:46 pm

Re: APR, Stoma, Permanent Colostomy, Oh My!

Postby roadrunner » Fri Oct 11, 2024 7:49 pm

Thanks, Beach. Yeah, the infection was no fun. But as we know, that kind of stuff comes with the territory.
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20
Chest CT 3/30/21 growth 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy 7/7/23
5 cycles FOLFOX
APR 6/24. NED for now

mozart13
Posts: 170
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: APR, Stoma, Permanent Colostomy, Oh My!

Postby mozart13 » Sat Oct 12, 2024 2:43 pm

roadrunner wrote:[Posted this a couple of minutes ago on the STAGE IV thread, but re-posting in a new thread because of the ostomy angle. Enjoy!]

So to keep it as short as possible, after my LUL lobectomy in July of ‘23, I worked back up to running 2-3 miles 4-5 times a week, with life otherwise normal. I knew, however, that I had a small tumor in my rectum, likely a lymph node that had somehow survived the original CRT. So I started FOLFOX again in February of this year, and did 5 more cycles of chemo, for 13 FOLFOX total (though some minor Oxi reductions meant I didn’t have 13 Oxi cycles—I do have some minor numbness in my feet these days). The tumor responded, CEA back to normal and stable to slight reduction in size. I had a choice of TME or APR, but my surgeon and I both heavily favored APR, so there wasn’t much debate. There was just too much accumulated damage to my rectum (which I really shouldn’t have had anymore, anyhow), so incontinence would have been likely. I’ll admit I was pretty freaked out about the surgery.

Did the APR in late June. So here’s the thing: it was a reasonably tough surgery, and I even had to go back in the hospital briefly for an infection (likely viral), but overall it was smooth sailing and no biggie. Ok, now get ready for it—I would say the resulting stoma/ostomy is . . . no big deal. Just takes a little getting used to, but overall I’m loving life again and doing wonderfully with it. Just about to start real running again, though I’m already walking vigorously for long distances every day. Sitting (look up “Ken butt”/“Barbie butt” for those of the female persuasion) was fine after a month. The ostomy itself is kinda fun (I’ll admit I’m a different sort of guy, could care less about touching poo (which happens from time to time), and like technical challenges). Still figuring out optimal clothes and even some “appliance” optimization, but no real troubles. Feel 100%, at least, as usual, until my next scan! Have clambered back to NED for the moment.

So that’s the current update. Will answer any questions anybody may have about the ostomy side of things (there’s certainly much more to tell!), and feel free to PM me if you’d like. I may post this tale of woe ; ) in a separate thread as well [e.g., this one], in case anyone out there is considering this surgery. It seems very sad to me now that people get all freaked out by this. It is really nothing in the big scheme of things, or at least it’s been that way for me so far.

To close with a couple of anecdotes: Telling my 20-yr.-old son about the upcoming ostomy surgery while driving to his summer job in Maine back in June, and as it sinks in he turns to me with a mischevious grin and says: “You’ll have a last poo!” Never one to be upstaged, my riposte was “As will you, my friend. As will we all.” But seriously, my “last poo” was not memorable. Surgical prep. Would’ve liked to go out with something more impressive ; )

My 18-yr.-old is more of a tough guy, so I worked it into my dad duties, threatening to chase him around and rub the bag on him if he doesn’t clean up his messes. (It’s pretty much hermetically sealed, so not a real scary threat, but weird nonetheless ; ). But he didn’t really grasp the nature of the anatomical changes, as I discovered yesterday while watching football with him. We were chatting about it, and I said: “I can actually show you my intestine, if you’d like.” He demurred, fortunately, but suddenly got really confused. I explained how the stoma was created by pulling the descending colon through the abdominal wall. His eyes went wide and he said: “Wow! Crazy!” Then we went back to the game. I dunno, maybe it’s good to have boys!

Anyway, all good for now. Sorry for the long post, and, of course, YMMV. I wish everyone the best on these insane journeys.

[One framing note: I don’t mean to minimize any troubles folks may have had with this surgery or the resulting ostomy. I researched this *endlessly* (those of you who know me by my posts will not find that surprising), and so am well-aware of the many things that can crop up (some still may for me!). Just wanted this out there because there is so much fear and stigma around ostomy surgery and ostomy life. And that’s too bad. Also am happy to discuss it in detail if anyone wants/needs to.]


Glad to hear you're doing well after the surgery. It’s inspiring to see your positive outlook on the ostomy experience.
55 year at the time of diagnosis, male
Diagnosed with T1,T2 N0 M0 rectal cancer
Total neoadjuvant therapy or TNT (chemoradiation followed by systemic chemotherapy)
Negative since Feb. '17
No surgery
Watch&Wait approach 8)
I don’t come much to the forum , so if this is not updated it means I remain negative!
Wish good luck to all!

roadrunner
Posts: 512
Joined: Sun Jan 12, 2020 8:46 pm

Re: APR, Stoma, Permanent Colostomy, Oh My!

Postby roadrunner » Sun Oct 13, 2024 1:16 pm

It just doesn’t seem like a big deal so far. No real impediments or issues. Still fine-tuning eating and travel, but all good. I will admit, I’ve been relaxed about getting back to running, have been targeting the next few weeks, so we’ll see. But I’m walking about 3 miles per day fast, so reasonably hopeful.
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20
Chest CT 3/30/21 growth 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy 7/7/23
5 cycles FOLFOX
APR 6/24. NED for now


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 8 guests

cron