APR, Stoma, Permanent Colostomy, Oh My!

[roadrunner]

[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.]

[Markdale]

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

[roadrunner]

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.

[jts]

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

[jts]

[double-post deleted]

[utahgal7]

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

[roadrunner]

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.

[O Stoma Mia]

... 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.

... 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/

[IDF108]

Roadrunner, man, admire your indomitable spirit and resilience!