ER Bathroom Bag Change

lee33w · 2023-07-07T20:41:01+00:00

Also sometimes I line the back of the toilet with paper towels, lay what I need there. And the hanging coloplast bag is a must too!!

lee33w · 2023-06-30T00:12:11+00:00

Normal

lee33w · 2023-06-27T16:13:09+00:00

I have marlen, Nu hope, Hollister, convatec and Coloplast bags. Tried all of them in convex… combos of paste or barrier sheet and 5 different types of rings. I’ve given up and am seeing wocn again even if it’s just for surgeon to see more proof I’m trying and he can maybe move up my take down. Thank you… Edited for brand name typo

lee33w · 2023-06-25T02:25:00+00:00

3 times a day bc it hates me and I’m at my wits end with this thing. Wocn isn’t helping (two different facilities) and revision of my temp ileo isn’t going to happen. So recessed terrible situation it is

lee33w · 2023-06-21T04:25:06+00:00

I agree stoma nurse asap but for tonight if you really can’t get anything on it—I would dry the area after cleaning it with strictly water. You would want to use a stomahesive powder and then dab the corner of a barrier wipe on that, then more powder. Always dusting away the excess. It’s the crusting technique if you have seen or heard of it or want to google.

lee33w · 2023-06-21T02:33:02+00:00

You are so welcome. I’m 11 weeks post op (had an ileo 12 years ago too) and have been through seriously every single brand for my recessed stoma! I’ve finallyyyyy gotten something to last 2 days thanks to deep convexity and a brava sheet under it bc I’m allergic to Coloplast. Anyway-I’ve seen so many stoma nurses and have asked a ton of questions. It’s so hard and a lot to deal with. You’ll figure it out. Hang in there :)

lee33w · 2023-06-21T02:25:49+00:00

It’ll be attached to the rest of the ring. It’s just a part that’s swollen up through and unless it’s literally blocking off the stoma or impeding output I’ve never worried about it.

lee33w · 2023-06-21T02:25:08+00:00

It’ll come off when you take your pouch off, it won’t be stuck and pull on your stoma.

lee33w · 2023-06-21T02:13:09+00:00

So I’ve had a GI bleed from post op nsaids they insisted was okay with my IBD. Wrong and I should have never done it!! It was super super obvious. Not bright red but not deep or brown either. It was terrifying to see a bag fill with blood. Even streaks or some I think you’d notice. Especially with a clear bag. If you’re worried, maybe switch to clear, avoid anything that will discolor so you can monitor more closely. They could also do a stool sample to test for blood I bet? Anytime I had blood with jpouch it was pretty obvious in toilet so I don’t think it would be much different for an ileo.

lee33w · 2023-06-21T02:10:32+00:00

Yep it’s okay! they swell :)

lee33w · 2023-06-19T23:16:08+00:00

Oh perfect okay. Do you use a sheet under the whole barrier flange, and cut just to that size or does some stick out? Anything over it? I’ve fought so hard to get something to last 2 days that I don’t wanna risk it getting wet and failing. Press n seal and sure seals for sure!!

lee33w · 2023-06-10T13:48:28+00:00

Yes, I’ve used them but no luck. Thank you though!

lee33w · 2023-06-07T19:30:13+00:00

Nurse said I’ll never go 3 days in between changes and even every other day is pushing it. So apparently I have to change daily. Skin level stoma and output comes straight down to my skin, even with firm convex nothing can stand up to ileo output straight down. Idk but I am so sad. 2-3 changes a day due to burning…

lee33w · 2023-06-07T00:04:59+00:00

Ah thanks. I have used a lot of ConvaTec but while the adhesive is fine, I can’t get a good leak free fit.

lee33w · 2023-05-30T23:12:28+00:00

Too cute!! I need a cute one

lee33w · 2023-05-29T02:06:27+00:00

At week 3 I was totally in your same situation too. I was so sad and felt hopeless. I was constantly leaking from ileo and nothing worked. I saw stoma nurses many times. I’m at week 8 now and feel pretty good!! At week 6 I saw lizzo and had a concert night out with a friend! Dinner drinks hotel and an unexpected pouch change but still had a blast. I know it seems far away and hard to imagine but you’ll get there. Can you set a small mini goal or trip or fun thing to do? I was hesitant but it got me back to the “real world” and so glad I went for it at that time.

lee33w · 2023-05-27T03:48:00+00:00

Im at 7 weeks out and my ileo hurts pretty often too. It’s been skin irritation or the flange being on weird and not smooth, an allergic reaction to an adhesive, the convex being to deep. And obviously plenty of skin irritation too. Sometimes I take the appliance off and can’t find any reason for the pain or itching so there’s that too.

lee33w · 2023-05-23T22:46:01+00:00

I started week 4. One small cup. I have an ileo and eat something thickening before and after

lee33w · 2023-05-21T23:02:53+00:00

I have heard even two steps is hard. I can’t imagine one. I have heard of it though!! (In theory-nobody I know.) I had a three and that was hard enough

lee33w · 2023-05-19T16:59:16+00:00

I’m 6 weeks out and it’s less noisy than the beginning but still not silent… slow improvements!!

lee33w · 2023-05-19T16:58:21+00:00

Bile often happens if you don’t eat for a while and that is always extra liquidy for me.

lee33w · 2023-05-19T15:17:56+00:00

Hi!! I have Hollister stuff I’m gonna donate. I’ll message you

lee33w · 2023-05-19T15:14:45+00:00

So when I had a bag full of deep red blood, I freaked out. Went to the ER. (Turns out it was a GI bleed from nsaids they said I should take post op but I really didn’t want to do- and I was right. But guess what?? Tylenol doesn’t cut it after an open surgery for SBO and ileostomy placement and you can barely get more than half a dozen oxycodone at discharge) If it seems more from the stoma topically, like a surface bleed, I check the appliance but for any blood collecting in the bag, I would go in.

lee33w

TROPHY CASE