u/kock_by_chance

I've been laughing out loud for the past five minutes.

En route from the closed-for-construction bathrooms back to my truck, walking past the little breakfast tables outside the boat house at the lake:

A prim older woman sitting with her cappuccino was staring at me as I walked away from the closed-for-construction restrooms, heading towards the parking lot beyond her table. I was walking very slowly because I had been having high output for the previous couple of hours and was weak and tired, probably due to the combination of intermittent blockages and low electrolytes.

In an attempt to diffuse her hostility, I met her gaze and said, smiling, “Hello.”

No response. I held her gaze and tried again, slightly louder even though I was by then a few steps closer to her. “Hello.”

No greeting, but she did acknowledge my presence with, “What’cha carrying there?”

I wear my bag (opaque 7” Hollister closed pouch) out, as the extra pressure from clothing is very uncomfortable, and as I often peek at my stoma to check for retraction and prolapse, and to reduce the pressure in the bag. When my bag is heavy, as it was at that moment from the liquid output that had filled it over the prior thirty minutes or so, I support the bag from below with my hand because I have a mechanical closure (presumed from abdominal scar tissue) that is exacerbated by the weight of the bag pulling downwards.

I did not mention any of this to her, but simply answered her question, “A bag of poop.”

“What?” she asked, I think in spite of herself, as she struggled to open her bag of nuts.

“It's my ostomy bag, a bag of poop.”

I was just adjacent to her at this point and she looked away and gasped, “Oh my God.” before shoving the nuts into her mouth.

A step or two past her by then, I just said, “The things we wish we didn't know….” And then I laughed. I laughed at the absurdity of the situation, at her shock, at the fact that I was, in fact, holding a bag of very liquid poop in my hand. I laughed off and on the whole way back to my truck, the laughter bursting out of me each time the ridiculousness of the whole thing struck me afresh.

I also sang the song that's been going through my head today, “This is why -- I gave you all compassion,” “This is why -- y’all can't have nice things”. Thank you Hayes. Thank you, strange woman. The laughter was wonderful and welcome. As is the blue sky and bright sunshine.

https://open.spotify.com/track/5ijg5jN9uzGoyjHhfDHMWx

Sharing this story of mine, from April, because sometimes the only way to keep going is to laugh. To keep walking towards the sun, to keep on going, even when you're going through hell. To pick yourself up and carry on. And sometimes, just sometimes, things do get better. In the last few weeks I have noticed that I do not have to hold my bag up when it is full to keep my stoma open. <3

Edit for clarification -- I'm talking about putting saline into the inactive limb of my loop ileostomy, the 'entrance,' as it were, to my inactive colon. I'm irrigating to flush out my colon, an attempt to clear hardened mucus, heal my diversion colitis, and improve my microbiome prior to reversal.

Has anyone else tried this, perhaps as a participant in a study? Would you share your experience? How did you do it, what did you use, how did it affect you?

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I've found several articles about irrigating the colon via the efferent limb of a loop ileostomy.

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Some use saline with probiotics:

https://pmc.ncbi.nlm.nih.gov/articles/PMC8267790/

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While others use saline with a thickener:

https://onlinelibrary.wiley.com/doi/full/10.1111/codi.70448

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It seems like this can reduce diversion colitis (the first paper) and post-operative ileus (for reversal). And it makes sense that getting things moving the the colon again would help it be healthier and be prepared for being reconnected.

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I've had severe diversion colitis, probably because I had already had a lot of GI issues prior to my stoma placement. For a year I felt like I needed to poop pretty much all the time but could rarely pass anything (and the first time I tried after my fistula repair surgery it broke the stitches at the internal rectal opening, causing a new abscess and, later, tract). When I decided to ignore my surgeon's recommendation against enemas, I finally had some relief, and for the last year I've been reliant on them almost daily. Isotonic saline.

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I thought that the inactive limb of my stoma was tied off, so I used only enemas, despite the fact that the liquid rarely seemed to get past my descending colon, if it even got that far. A couple of months ago I read these papers and then just tried it, using a syringe with a catheter tip. And the first time, I felt so much relief, as if something had unlocked. My small intestine gurgled and my whole belly relaxed.

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My surgeon is okay with saline but seems not to be familiar with any other options. I had read about butyric acid enemas from compounding pharmacies, but my integrative doctor suggested sodium butyrate (from a pill) dissolved in saline, much cheaper and easier.

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What I've tried -- skip this paragraph if you're squeamish! I started with saline, and then with the sodium butyrate dissolved in it, but nothing was coming out. I felt like there was a blockage somewhere that I couldn't get past from either direction. I finally put a few drops of mycelized oregano oil in the irrigation saline, and this worked, but I was in hell until the blockage cleared. I didn't understand what was happening then, but I was sick sick sick as the oregano worked its magic helping my body fight the bugs and biofilm. At least, that's my guess, because finally one day I pooped out the most foul yellow liquid. It smelled like some of the clods of gray paste that had occasionally come out previously -- putrid, like a decaying dead animal. And then I felt so much better. Soon after that, I read about NAC being used to dissolve impacted stool in the small intestine, with 4% NAC saline being injected with a needle through the abdomen just above the obstruction. For a few weeks now I've been irrigating with NAC saline, and based on what has come out, it's no wonder I've had so much trouble. Clumpy white stuff, hard yellow stuff, long strands of white stuff (one 3 ft long!), flat pieces of semi transparent stuff among them. The first couple of times I felt incredibly awful after the NAC went in, and then like a new person, alive again, after passing whatever it loosened. Since then it's been easier, but there's still a lot of gunk coming out. I've generally only put about 30 ml in, and sometimes I use the sodium butyrate after the NAC. I'm hoping to try some resistant starch and/or probiotics, but I've been hesitant because of how much gunk seems to still be clogging up the pipes.

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I'm very curious to hear if anyone else has tried this and what your experiences might have been!

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For those who like wordplay, and who have independent-minded stomas:

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I used to have two dogs. Both were very smart, but in very different ways. One was a cattle dog mix, a herding dog bred to please, and the other a klee kai mix, bred to do as she pleased.

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I got help from a trainer, and she taught me how to capture behaviors. I would sit in the living room with a bag of treats and wait for them to do something interesting, ready to immediately reward them. The cattle dog loved the game, and would try out all sorts of behaviors, trying to trigger the reward, even whimpering in frustration when she couldn't figure it out. The klee kai, on the other hand, would lie there, one front paw crossed over the other, looking at me as if to say, "I *know* what you want me to do, but I don't feel like it right now."

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My stoma, Splendid (after a Yellowstone geyser), was originally very headstrong, and did not care one whit whether the bag was on or off, or whether there was anyone nearby. After an injury to my abdominal muscles (6 months post op, now two years ago), her will and independence gradually diminished. She tightened up and retracted and tried so hard to pass output but continually struggled, and I got sicker and sicker over the ensuing year. In the last six months, however, after tremendous care and attention, she's beginning to perk up again.

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With delight, I recently read that klee kais are a type of Spitz, a family which includes huskies and malamutes, dogs that were bred, in part, for their independence. Now, when I write about Splendid being unexpectedly energetic, I write, "Splendid is Spitzing away!"

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It was hard for me to be glad to be incontinent, after my ostomy placement. But, after struggling for so long (I was malnourished, anemic, and skeletal at the lowest point), in the process developing a kind of partial continence, and now beginning to return to health, *enabled by incontinence*, I'm so grateful.

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Please share your ostomy-related puns, if you have them, or simply your joy in the increased function and health that your stoma may have brought you. ♥️

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[Klee Kai on the left, Cattle Dog on the right.]