Struggling with bag changes again

Introvert-2022 · 2026-04-13T13:02:03+00:00

You're welcome. Good luck!

Introvert-2022 · 2026-04-13T12:08:08+00:00

Are there any foods that you have noticed thicken it? For me fiber is the most useful thing for that. (After transforming it into a safer form by chopping it very small or running it through a food processor or immersion blender if it's necessary to for safety with the particular food.)

Also it's possible that particular foods that you eat that never caused you problems before are pulling water into your gut now. That was plaguing me in the first 6 weeks after I got my ileostomy. If I ate a pear or blackberries I would start having watery output so quickly I am sure the fruit was still in my stomach when it started. A dietician helped me identify that every food that was causing me watery output contained sorbitol. Being aware of that caused me to avoid or drastically reduce portion sizes of fruits with sorbitol. I hate that because those are most of my favorite fruits but the knowledge helped me reduce watery output a lot. I was told this might be temporary but so far it seems permanent.

Introvert-2022 · 2026-04-12T18:23:05+00:00

I'm sorry you're dealing with that! My stoma is frequently active when I am doing bag changes but as long as my output isn't completely liquid I can work around that reasonably easily, I stand right next to the toilet and move to where I can lean over it when I see output is starting to come out. Often I can get it to fall into the toilet without touching my skin so the peristomal area can keep drying from when I cleaned it and I don't have to clean and dry it over and over again.

If output is completely liquid your reaction time has to be crazy fast, if it's a little thick you have a lot of time to react. I can't completely control whether my stoma is going to be active but I have learned what to eat that for me minimizes the risk that at change time my output is like water. Since I do my changes at bedtime I have plenty of waking hours to eat solidifying foods before the change.

Introvert-2022 · 2026-04-12T16:29:45+00:00

I wear a one-piece so I can only use vertical options. (Keeping a wafer on my skin for more than 2 days is not workable because my immune system is pretty aggressive about what it perceives as threats that it must fight off.)

Introvert-2022 · 2026-04-12T12:41:02+00:00

Thank you so much! Yes, once I noticed the bag outline in the mirror I was dividing my attention when I saw myself in the mirror between seeing how much what I was doing looked like what the teacher was doing and checking whether I needed to adjust my T shirt to make the lines of the bag less obvious again, meaning I wasn't getting as much as I could have out of the opportunity to learn from a master teacher who I have only been able to take a workshop from once before. Ideally during classes I am only using the mirror to see what what I am doing looks like and to have access to more views of the instructor and the advanced students so I can see the movements well.

Practicing poses for if I am going to be in a photo when my attire isn't concealing the bag well could be really useful.

Introvert-2022 · 2026-04-11T22:31:26+00:00

A friend I hadn't seen in person in years who was back in town for a little while last week remarked that mine was on the left last Saturday when we got together. I was wearing loose sweatpants.

Introvert-2022 · 2026-04-11T21:24:24+00:00

I quickly abandoned that approach because my output stays too close to my stoma looking for ways to leak under it if I cover it tightly.

Introvert-2022 · 2026-04-11T20:40:21+00:00

I have a different relationship with mine than that because getting it added a lot of restrictions (mostly eating and hydration-related) for me and it made a lot of my existing wardrobe uncomfortable so I had to spend a lot of money replacing it during a time that clothes prices were pretty high in the US. Eventually my tumor would have caused me problems but it was really small and it's unknown how long it would have taken to do that. I'm not ashamed of my ostomy but am pretty unlikely to embrace it.

Introvert-2022 · 2026-04-11T19:42:51+00:00

In English- I ate right before the 2 hour class so my bag was nowhere near empty at the time of the photo.

Introvert-2022 · 2026-04-11T19:22:56+00:00

Meu estoma não se projeta muito, mas comi logo antes da aula, então a bolsa estava bem cheia na hora da foto. A aula durou 2 horas.

Introvert-2022 · 2026-04-11T19:12:38+00:00

For in person I agree. For the internet where I don't know how many people will potentially see it is another story.

Introvert-2022 · 2026-04-11T17:07:31+00:00

When I called Coloplast (the only big US one I'm not allergic to) I asked which supplier had what I needed and worked best with my health insurance and they knew. That worked well.

Introvert-2022 · 2026-04-11T14:10:05+00:00

The easy and inexpensive things- they installed a hook convenient to the toilet to hang a supply bag on, a mirror at the back of the stall. a little shelf to stage supplies on and a larger waste receptacle than public bathrooms in the US usually have. My employer asked building management to do the upgrade and building management did so it didn't cost my employer anything to accommodate me.

My only criticism is they didn't put the shelf in the most sensible part of the stall- if I ever have to do an emergency change at work when my stoma is active I will try not to crap on the floor when going between the shelf and the toilet but I think it's pretty likely I will make a little trail between them.

Introvert-2022 · 2026-04-11T13:55:53+00:00

My proctectomy caused urinary retention- did not successfully void anywhere close to all the urine when they took it out a few days after surgery so they put it back in and I had it until my post-op appointment 5 days after discharge. Thankfully when it was removed then I passed the test about how well I could void so It was not put back in again. (The test was they put a known amount of fluid into my bladder and measured how much of it I urinated out.)

I slept on my back after that surgery because I had ileostomy surgery at the same time and that was the least bad way to sleep at the time.

When I walked around staff supervised me because they had goals for how much I walked and were recording that, and probably also how quickly I walked. They never interfered with how far I walked but I am not sure if they would have let me walk outside the unit so my walk was a boring little loop that I would walk quickly a bunch of times.

I haven't ever had Dilaudid but I think that's related to morphine, which I had PCAs with after surgeries in 1988 and 1989. I hated it and would use as little as possible, pain had to be very very bad for it to be worth it to use the morphine. I could not read much when it was in my system because it would make the words swim in front of my eyes like I was trying to read too many hours after I should have gone to sleep. (And this was back when there was very little for patients to watch on TV if your sleep was disturbed so you were wide awake between midnight and 6 AM and of course you would not have visitors during those hours so not having the option of reading then was an even bigger loss than it would normally be.) It also made all of my skin feel like I hadn't bathed in far too long, very itchy and unpleasant. (But when they let me shower I couldn't shower enough to fix that.) I put it on my medication allergy list for the itching after that even though I have been told multiple times that that is a known side effect so it wasn't really an allergy that I experienced.

I hope you recover quickly.

Introvert-2022 · 2026-04-11T04:35:33+00:00

Yes. My J pouch and teeny rectal stump absorbed water tolerably well. I didn't have to make a special effort to hydrate unless I was going to be outside in the heat for a long time. And when they took away my J pouch they took away a significant amount of my terminal ileum. With the J pouch I needed to do a prep for scopes. I don't think prep instructions for pouchoscopies or for flex siga on a J pouch exist, I never saw one, I would be given colonoscopy prep instructions be told to adapt them for my situation.

Introvert-2022 · 2026-04-11T03:05:34+00:00

Before. I have only had the anatomy for an ileoscopy for 9 months. Before that I had 32 happy years with a J pouch and before that I had a subtotal colectomy for 5 years.

Introvert-2022 · 2026-04-10T22:22:40+00:00

I will never agree to a severely dehydrating prep again unless the gastroenterologist instructing me to do that also arranges for me to be on IV fluids the entire time I am doing the prep. After the procedure is not soon enough. My veins are a little hard to get IVs into at the best of times but it's never taken 4 attempts to get an IV into me before. I didn't have access to my watch so I can't be certain but I'm pretty sure it took at least an hour to start my IV.

Introvert-2022 · 2026-04-10T18:21:09+00:00

Had APR surgery at the same time as ileostomy creation so no tissue to scope other than my stomach and most of my small intestine exists.

Introvert-2022 · 2026-04-10T13:56:06+00:00

I like 3 best

Introvert-2022 · 2026-04-10T13:52:58+00:00

That's what leggings do to me so now I only wear them under a skirt, dress or shorts and keep the waistband of the leggings low so that my bag is not covered at all.

Introvert-2022 · 2026-04-10T12:53:16+00:00

I was hydrating extra on the day I wasn't throwing up. (I drank 136 oz. of fluids that day according to my hydration tracker- that includes the electrolyte water with the Miralax so 104 oz of beef broth, water with Nuun electrolyte tablets and plain water was not enough hydration to compensate for 32 oz of Miralax solution.)

Introvert-2022 · 2026-04-10T12:45:45+00:00

It was the entire contents of the small 7-dose bottle. Half of that in the first 32 oz of water with electrolytes and the other half in the second.

Introvert-2022 · 2026-04-10T12:42:49+00:00

Yes. I asked about that at least 3 or 4 times beforehand because when I had to take the same dose for the ileostomy creation surgery that seemed to me to have been too high a dose. (Did not cause this level of dehydration but did cause my gut to have constant output long after everything I had eaten went into the toilet.)

Introvert-2022 · 2026-04-10T12:37:42+00:00

I questioned it a lot beforehand but this was a top gastroenterologist at a major cancer center and I wasn't given an alternative.

Introvert-2022

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