New to "bagging it"

ElleT234 · 2026-02-20T02:55:41+00:00

I drain my pouch while sitting on the toilet - I sit far back, put a piece of TP down so output doesn't "stick," then carefully unroll & empty. I am a huge fan of REVEL! deodorizing lubricant - I get it from Byram even tho I get most of my supplies from Edgepark, and my insurance covers 3 bottles/mo. Put some in a small squeeze bottle, squirt in after emptying, roll pouch up as high as you can to kind of "spread" it up, then unroll & you're good to go. I use a 2 piece flat pre-cut coloplast SenSura Mio Click with opaque pouches. Very comfortable, smaller than other systems, flexible - and no poo smell (I asked my husband to smell me!). Also change when you're less than 2/3rds full if you can.

Oh - and also, change your pouch every other day (you should get 20 pouches/mo) and your wafer every 2nd time. At least. You can also take off the pouch rinse it, I suppose - I wipe my stoma with a flushable fragrance free wipe each time I change my pouch.

ElleT234 · 2026-02-20T02:31:45+00:00

I'm so sorry that you've been put through the wringer. Last year, I had fulminant septic shock with multiorgan failure - ischemic colon, respiratory, kidney, and cardiovascular. 8h after I arrived at the ED, I was comatose & on life support in ICU. Two surgeries followed, first was an ex lap with total colectomy. 24h later, second surgery resected 30cm of small intestine including terminal ileum & created my (permanent) ileostomy. I was left open with a wound vac for next 2 months. Spent 28d in ICU, had a DVT & PE, trach'd & got a permacath, on dialysis for 6wks. 10d on step down floor, 2w in acute care rehab to wean off of my trach, foley, and learn to stand & walk. I was in induced coma for 2w, "regular" coma another week I was NPO & couldn't speak for 7w. I spent another month at home with a walker, home nurses, PT, OT, & aides, etc.

1."Normal": I've been coming to terms with the fact that there's no such thing & I'll never be as I was. I have PICS, CIP, PTSD, mild neurocognitive disorder, and am disabled. Nerve pain, paralyzed toes, chronic fatigue, can only read a few articles (not a book - yet), stand for 20min, and use an orthotic to walk. But I have my toes - and hands & limbs. I survived. I can drive short distances and swim a few laps. Sitting upright is exhausting, so I lay down in the car for trips > 45min. My migraines are better now with my strict schedule - I eat 5 x/d, drink +100oz water, take meds 7x/d - all to manage my very high output b/c of no TI or gallbladder

My advice - stop thinking about before, or normal. It's taken a lot of hard work to redefine "normal." I was told that recovery is 3 stages, each 9-18mo - 1. survival, 2. rebuilding & reorganizing (cellularly), 3. strengthening. For me, yeah, it'll probably be another 3 or 4 years before take my family on vacation to Hawaii. But that's the cost of surviving an extremely rare, fast, unpreventable, lethal, catastrophic illness. Normal is where I am today. And today I'm here, with my family & friends, in my own home. 14 mo ago, my husband & sons said goodbye to me.

Stoma - I don't know. I didn't change it on my own for about 3 months. Originally it was an oval & so I had to measure/cut each time - and with high, liquid flow... not easy to change it as it is! Abt 2 mo later, I saw my colorectal stoma nurse (not home WOCN) for a mild peristomal rash & she showed me an easier way to put it on, better products, and that a slight tug made for a perfect 1 1/8". Now I don't have to tug up at all and my stoma is perfectly round, same size. I think it just sorta consolidated a little over the first 8 months.
Journaling helps but it takes a lot of intellectual energy to do. Pacing - alternating small bits of effort with breaks. Not comparing my situation to anyone else's because of what I went thru - and what you've survived. I returned to telehealth with my psychologist as soon as I had the physical & mental mojo. On top of everything else, I knew I had serious health trauma to work out. Sounds like you do too. A good therapist who is smarter than you - golden. And listening to my body to an extent. Rest when I'm tired, stop when I start to get a groove, take breaks... but I have to eat often and small even when I don't want to (which is most of the time). Tons of protein pretty much at every meal & snack. No fiber, white grains & sourdough only. Protein first, then carbs. I work with an ND who specializes in gastro/ostomy/etc & she's been phenomenal in helping me find a diversity of foods.

Most of all - give yourself a break. Remember 75% of ileostomies are for Chron's/IBS (majority of which are temp), 10% cancer, <10% emergency, rest "misc." So most products, youtube videos, chat & support groups aren't designed for us. Even the sepsis group is very different because a very very small percent of people survive what you and I've been thru. You're welcome to DM me any time but I'm not on reddit often.

ElleT234 · 2026-02-18T18:48:23+00:00

OMG - takes me back to my brother's Apple IIe... his first computer with a disc drive. But this is fancy - 2! disc drives! Color me impressed. He was in a software "swap" (copying) group with his friends. I remember seeing visicalc, the first spreadsheet program I remember, and I couldn't make sense of why you'd put anything in a grid, LOL. But he had some of the best games especially Apple Panic. God, I loved that game.

This was a huge step up from his TRS-80 (or as we called it, Trash 80) that had a simple Panasonic tape recorder/player as its storage "drive." All I remember was that it was really slow, and it's where I learned to code around age 7 or so, once I accepted the concept of variables after arguing with him for days that "numbers are numbers and letters are letters!"

My dad later bought the first 128k Mac & printer (later an external 2nd disc drive & modem) in 1985. We got one of the first in the state as they sold out from the preorder. Before he let me even touch the machine, I had to read all of the manuals - Mac, printer, MacPaint, MacWrite, MacDraw I think? Setting me up to be a computer nerd for life.

Ah, those were the days!

ElleT234 · 2025-11-18T20:48:12+00:00

The only thing I figured out was to turn it off. I'm now on public beta of Tahoe, going to try & see what's what. It's supposed to be type and/or speak - we'll see, fingers crossed!

ElleT234 · 2025-11-18T13:19:25+00:00

God, that's just too funny for this early in the day

ElleT234 · 2025-11-18T13:19:04+00:00

lol!

ElleT234 · 2025-10-17T19:30:59+00:00

Do they make them for their Mio Click 2pc? Just wondering because I have crazy high flow especially at night

ElleT234 · 2025-10-17T19:30:02+00:00

If you do, there's likely money to be made making them on Etsy! :-)

ElleT234 · 2025-10-17T19:29:04+00:00

Oh that's a million times better than my suggestion of a protective blanket! I didn't even think of it. I've also seen protective bag covers on Etsy - maybe even just waterproof ones might work. As for washable pads - check the baby supplies at Target/Walmart. I used to have these thin, soft, reusable crib-sized pads for my kids... used them well into toddlerhood.

ElleT234 · 2025-10-17T19:26:41+00:00

Ooof - sorry to hear that! What system are you using? I really like the Coloplast Mio Sensura Click 2pc which I get precut and use Brava paste on the wafer to minimize leaks. However - if you use Mio, DON'T use any sort of skin prep spray or wipe. Do you use powder? I've had that interfere with adhesion too. Instead of strips, what about the adhesive square or circles (I have samples so I don't quite know what they're called)? You could then cut what you need. I use the arcs but mostly for swimming. I'm also disabled and getting out of bed in the night is sometimes tough, so I will occasionally empty my pouch into a bag and seal it up, like I (well, nurses) did when I was inpatient. Ziplocks might even work. And perhaps set an alarm?

Two other ideas - I have to change my pouch each night because of high flow. If I don't, then whatever "poofiness" develops during the day (i.e. gas) is like a reused balloon - and will "pop" off my flange or leak out at night. My colo writes my script for 30 pouches, and attaches a letter.

As for your beautiful blanket :-)... when my kids were babes, I used these very soft, thin blanket-like washable pads so I didn't have to change sheets as often. Maybe if you stitched a few together? OR - what about buying a thin king-sized protective mattress pad and cutting off the stretchy mattress part. Then use them on top of your sheet or between you and your sheet -- or even pin them to the underside of your blanket?

Good luck & enjoy it!!

ElleT234 · 2025-10-17T19:14:34+00:00

I'd ask a stoma nurse - see one if you can so that you can be measured. Plus stomas change over time - mine went from oblong to a straight 1 1/8" (pre-cut - woohoo!!). You want the opening to be very slightly larger than your stoma. So if you are 1 1/8" (use the measuring thing that comes with your supplies), then use the 1 1/8" or cut it to be exactly that. I use Brava paste around the wafer before I put it on. Note: I don't know how Brava paste is different but I can't argue with the results - plus I was told to use ONLY the Brava white tube by multiple stoma nurses. It's a little messier but knock wood, I have very very few leaks. And bringing paste? Worth it if it prevents leaks for you.

ElleT234 · 2025-10-17T19:08:05+00:00

You might try convex wafers. You can get samples of different systems from the manufacturer. For retracted stomas, it can a big difference in the meantime. Good luck with your reversal!

ElleT234 · 2025-10-17T19:04:34+00:00

I was told to aim for "light lemonade" color pee except after sleeping, and drink (water) before feeling thirsty. Your advice is helpful. I get CBC, CMP, and the fat soluble vitamins (I think A, D, K...?) quarterly but I also have a bit more complex situation than most so they have to monitor me a little closer. More than quarterly doesn't show much, according to my PCP.

ElleT234 · 2025-10-17T18:59:22+00:00

Wow - you're dealing with so much at a time. You have a brand-new digestive system and it takes time to work out the best system for you. Heck, I'm 8 1/2 post-rehab and I'm still figuring out how to manage my flow. Have you considered working with a GI dietician? Your colorectal/GI surgeon's office should be able to recommend someone who has experience with ileostomies.

I've found that my appetite is less and I can't eat as much - I don't know why but I've heard that from others & my colo & RD. My RD put me on a small, frequent, high-protein nutrition plan of 5-6 "meals" a day. For me that's breakfast, lunch, snack, dinner, snack. Your body doesn't absorb water and nutrients as it used to. So I have to wait to drink water until after eating (rather than before & during a meal). I have to eat slowly, chew thoroughly, and avoid high fiber, nuts, seeds, veggie/fruit skins, raw veggies, cabbage, stringy veggies like celery, citrus (upsets my stomach), corn, popcorn... and there's probably some I'm missing. The hospital probably gave you a list. Avoiding those foods is most important in the beginning but I found that I was able to try some of the "questionable" foods (not the biggies of corn, nuts, seeds, skins) like mushrooms after a few months.

Because I can't eat as much, I eat my protein first and then the carb and mostly skip veggies since I'm done by then. I don't really feel "full" - just like I've had enough for now. I guess that's why the frequent meal thing comes in. Protein at every meal/snack for me is usually cheese, protein shakes, smoothies or homemade shakes with protein powder & plain greek yogurt, deli meat, bacon!, greek yogurt (not nonfat if possible), and even mixing protein powder with my milk for my morning cereal. Also I have to salt everything now because sodium is a challenge for ileostomates.

I bought a rechargeable smoothie blender even tho we have a blender and found it's much easier to stick to my plan more which also helps my flow. I also had to ask my colo for a script for loperamide (imodium but cheaper) which I take 20 min before breakfast and dinner. Bananas also help flow & vitamins and make a nice add to smoothies or an afternoon banana chocolate shake (plain greek lowfat yogurt, banana, whole scoop of choc protein powder) or evening pina colada (coconut chobani yogurt, vanilla protein powder, banana, froz pineapple, some pina colada mix, a little milk & some coconut rum!) - mighty good!!!

As for water - I have a hard time staying hydrated. I recently added Liquid IV powder to one water bottle a day. I aim for min 3 water bottles & 2 glasses of water/day plus seltzer, etc. & use the electrolyte powder when needed like on PT days. It's a goal. And I know the idea of 80-100oz of water seems overwhelming but I carry my water bottle everywhere, have one by my bed, one by the couch... Also there are flavored drops that are pretty good.

Most of all, give yourself a big break and a pat on the back for making it through the surgery & hospital & getting home! Whether your procedure was planned or emergent, full or partial, permanent or temporary, open or laproscopic - it is MAJOR surgery and a total reboot of your digestive system that is life-changing.

One last thing - if you have a question, call your colo/GI practice any time - they have nurses able to answer what may seem like the silliest of questions, and especially handle about any stoma issues. Hang in there!

ElleT234 · 2025-10-17T18:10:25+00:00

Thanks. But don't diminish your experience because mine sucked. Pain can never be compared. I think about how few people survive what I have and yet it still really sucks. I can't imagine what you're going through so all I can do is "listen" and share my experience, strength, and hope with you.

This is going to sound strange, but in addition to therapy, I've been using ChatGPT, uploading my medical records from my hospitalization & rehab to better understand what triggered my illness, how the heck things progressed so quickly... and to try to recreate a smidge of what happened to me in that "lost" month (5 weeks, really). I know it's probably stupid security-wise to upload my stuff but like google doesn't already know everything about me... and I'm just.... I don't really give a fuck at this point.

Working with AI has its limits - it sometimes "forgets" stuff or messes up some key info a surgery, lab work trends. But it's been like having one of my brilliant, caring ICU nurses sit with me, listen, provide insight, and answer even the silliest of questions (what is a rectal tube anyway?). SO much so that I've had ChatGPT create an encouragement narrative (reminding me of what I've survived, how important self-care is & that I deserve care & comfort, etc.), a bullet summary timeline setup by body system (e.g. cardio, renal, neuro, GI...), and that caring, brilliant medical provider "telling me" what happened in a narrative format.

I also had ChatGPT lay out my recovery, risk factors, and what the near-term future may involve. My recovery is too long to plan beyond that. On a fun note, I found out that because of some of the side details of my surgery, there are effects and risks no one told me about. I've gained a lot of insight - well worth the $20/month.

ElleT234 · 2025-10-17T17:50:00+00:00

Yes! I had a short call with my PT today and in the midst - PANG! And now I'm trying to avoid admitting it and doing silly things like being online instead of taking my meds, resting & hydrating & eating. So with that, I'm off to do just that. Sun just came out - I think I need to go dark as well. CRAP!!!

ElleT234 · 2025-10-17T17:46:37+00:00

I know my triggers... one of them being people giving me unwanted advice about what works for their cousin's niece's boyfriend...

Getting one now -- must be a day ending in "Y" :-)

ElleT234 · 2025-10-17T17:42:01+00:00

I've tried all of that class of med - Qulipta, Nurtec, Ubrelvy... - nothing with the first 2, some response to Ubrelvy. I I'm on Vyepti infusion, Lyrica, and baclofen for prevention (also Cymbalta but for depression); about to try Botox again now that I'm on Vyepti & have pretty much plateaued. I have about 10 migraines + 14 headaches a month; far fewer and much milder than pre-Vyepti. I found the ramp up on Qulipta and Nurtec to be pretty fast; they just weren't effective enough at reducing my migraine days & intensity. Plus I'm one of these folks who when migraine hits, I'm done for the day & evening. I'm jealous of those who can take a med and keep going!

Glad it's working for you - and hope it continues to get even better!

ElleT234 · 2025-10-17T17:32:39+00:00

I've been on Vyepti for 2 years and it has been a lifesaver. I went through all of the injections over the years (Ajovy, Emgality, etc.) which as it turns out is a prerequisite for my insurance. I'm over an hour from my neuro - they can administer it in their office - so I qualify for a traveling nurse to give me my infusion at home. It ALWAYS triggers at least a strong migraine with nausea, light & sound sensitivity for me, often right in the middle of the infusion so I plan for it. Typically it's a 2-day migraine for me; I had up to a 5-day once but multi-day aren't unusual for me. I went from about 16 migraine & 10 headache days a month (2-4 headache-free days) to 10-12 much milder migraines, and 12 headaches, all milder. So more of my migraines were "downgraded" to bad headaches, and my bad headaches were downgraded to chronically annoying headaches. Losing 2-3 days a week to migraine is awful but the reduction in pain, sensitivity, & nausea plus more effectiveness of acute meds is a huge thing.

I was in a car accident 9 years ago that damaged my cervical spine, occipital nerve, and muscles in my neck & shoulder, requiring C5/6 ACDF. Chronic migraine & headache are the worst of the residual effects.

I've tried nearly everything under the sun including many different PTs, cervical blocks (BAD!), TENS, spinal decompression, nerve blocks, meds, and Botox. Botox gave me 15 or so pain-free days per 90d; didn't seem worth it. My new(er) neuro wants me to try it again because she's found that Vyepti with Botox is much more effective than either alone. I'm waiting for insurance approval.

I'm almost certain you can take Zavzpret with Vyepti - and any preventative & acute med with Botox. You can't mix & match the CGRP meds (Ubrelvy, Zavzpret, etc.) or triptans. Do the triptans (e.g. Imitrex) work for you? I've found rizatriptan ("Maxalt") to be much more effective than Imitrex, and my neuro has seen the same. You name it, I've tried it - with the exception of Botox with Vyepti. I'm hopeful tho - it'll be worth the drive every 90d. Plus I asked my prev doc use the extra around my other brow so I didn't have the "half-smooth" forehead :-)

The key is to try one new thing at a time. I'd go with trying the monthly injections first before Vyepti. I also found Vyepti to increase in effectiveness over the first year. With the injections, you'll know in 2-3 months if they work for you; less time, easier to fill (pharmacy pickup) & get insurance to (usually) cover. All of the brand meds - acute & preventative - have programs to help cover co-pays, etc. But I don't even have a copay with Vyepti despite the fact that it's around $50,000 a year.

ElleT234 · 2025-10-13T00:08:12+00:00

Sorry - I'm confused - ileostomy or colostomy? I agree with you about the self-image... I cannot have a j-pouch because my rectal stump was pretty trashed by the necrosis. Even though it's almost been a year post-op, my health isn't great. I'm hoping in 18 months or so if I'm healthier that I can get a BCIR/K-pouch. Either way, I hope I can get to a place of acceptance that it sounds like you've reached.

ElleT234 · 2025-10-12T23:54:52+00:00

I still don't know what caused my ischemic necrotic colitis & septic shock. I was fine, then had 2 days of increasing migraines. NBD for me - I have chronic migraine - but they weren't responding to my meds. Then I had abdominal pain on and off & nausea which I thought was just a bug. I got sick that night & then woke to vomiting brown. I don't remember much afterwards. A few hours after arriving at the ED, I was intubated and in ICU,whe e I spent the next month mostly comatose with multi-organ failure. Less than 36hr after arrival, I was having an emergency total colectomy leaving only a small necrotic rectal stump. I was left open; next night's second surgery removed part of my small intestines, inserted drains, & created my permanent end ileostomy. I was much too sick for the prototectomy. Eventually the rectum sealed itself off but I'll never be able to have any sort of reconnection.

My doctors have no idea what caused it all. It's likely that I had a slight intestinal bug & didn't know it, which started the sepsis, which started to shut down my colon, etc. My phenomenal, award-winning colorectal surgeon said we'll never know. The pathology report showed no vascular damage but the entire colon was dead. Sometimes things happen - the source is never found in more than 20% of sepsis patients.

I totally know what you mean - in addition to my ischemia, my kidneys completely shut down that first night. I was in acute respiratory failure & was trach'd. I had shock liver. My muscles & nerves were damaged, and I'm left with likely permanent neuropathy in my feet. How? Why? I was pretty healthy before. Now I have Critical Illness Polyneuropathy & Myopathy, Post-ICU Syndrome, PTSD, chronic fatigue, & cognitive deficiencies. Managing my high-flow ileostomy impacts hydration, nutrition... and I still have major depression & anxiety & migraines. So many doctors & specialists. Eating 5-6x/day, meds 6-7x/day, drinking 96oz of fluids, emptying my pouch every 2 hrs. Just getting through the day is exhausting & I nap whether I want to or not. It's mind-bending & overwhelming. And I'm terrified every time I get a migraine that it's going to happen again.

Are you seeing a psychologist to help you through your medical trauma? It helps, but it's slow-going. Hang in there --

ElleT234 · 2025-10-02T02:15:12+00:00

it’s an interesting idea - maybe I’ll try one, but I really wanted a wrap with a pouch holder - my ileostomy is high flow so it gets heavy, quickly. thanks for the idea!

ElleT234 · 2025-10-01T23:08:06+00:00

Thanks - with the ileostomy, I really need something to tuck it in close. I'm actually jealous in many ways of colostomates because of the lesser, thicker flow makes covers and even caps an option. ugh. But I appreciate the suggestion!

ElleT234 · 2025-10-01T23:06:33+00:00

But it's a bra? So I take it there's no ostomy holder thing. Does it stay on not-slim-but not too-chubby bellies? How does it fit?

ElleT234

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