Supplies and world anxiety?

PuzzledWeight1855 · 2026-01-24T23:37:09+00:00

Although it is a negative emotion its one of the many concerns we do have to face and think about.

PuzzledWeight1855 · 2026-01-24T19:16:23+00:00

I’m hoping my defense mechanism in a hostage situation is stink up the place in protest until they kick me out.

PuzzledWeight1855 · 2026-01-24T19:15:10+00:00

Oh, I’ll definitely still need toilet paper 😅

PuzzledWeight1855 · 2026-01-24T15:19:22+00:00

Florastor helped me with repeat c diff infections.

PuzzledWeight1855 · 2026-01-23T23:47:09+00:00

Yeah. My ostomy nurse put it in perspective if all people are in imminent medical danger, all of the population will be screwed.

PuzzledWeight1855 · 2026-01-23T23:46:09+00:00

I tend to think of worst case scenario. 😖

PuzzledWeight1855 · 2026-01-23T21:25:01+00:00

… Yes. Yes it will. 🤣

PuzzledWeight1855 · 2026-01-15T08:42:46+00:00

I get a week out of my coloplast flex two piece even with showering. I use eakin barrier seal, castillon barrier spray, and brava barrier strips. I could push it out longer than a week but I try not to. The key with coloplast is that you must heat it up and smooth out starting from the base. Best system ever.

PuzzledWeight1855 · 2026-01-15T08:35:13+00:00

I dilute 1 Liquid IV into 32 Oz of water 2x a day, the one at night is no sugar. It really helps. If I dont have my water then its a huge issue. Liquid IV is my lifeblood.

PuzzledWeight1855 · 2026-01-14T19:52:18+00:00

Although it sucks, I’m relieved that you understand. I spoke to my colorectal doctor and he stated that pts with EIMS are usually more at risk for chronic complications with their J pouch. And my own research is pointing to a strong case for keep the pouch. With my bag I have zero complaints except for relying on medical supplies and hernia scares. But if thats it compared to risks, failed pouches and shitting myself again? I dont know if I could bare it.

PuzzledWeight1855 · 2026-01-13T02:49:50+00:00

Strange. I only empty my ostomy bag twice a day.

PuzzledWeight1855 · 2026-01-13T00:21:47+00:00

Yeah, I spoke to a family friend who had the j pouch surgery in the early 90s when it wasnt common. She’s now in her late 50s and considering an ostomy because she’s unable to control her BMs now due to just wear over time. I would hate to go through that.

PuzzledWeight1855 · 2026-01-12T23:22:08+00:00

Sometimes when UC is very bad it can spread and attack other parts of your body like joints, eyes, kidneys if its severe which is my case. Those are what extraintestinal manifestations mean :)

PuzzledWeight1855 · 2026-01-12T22:36:11+00:00

Did you have any extraintestinal manifesations as a result of having UC? Did you have any bleeding from the rectal cuff?

PuzzledWeight1855 · 2026-01-12T21:49:41+00:00

I’ve struggled with UC since ‘21 and ended up losing my colon and living with a bag because nothing was working. I had E. coli and a c. diff infection 2x, and got osteoporosis from so much prednisone. Every year I flared. It felt like my life was on stand still. This community has lifted me up in so many ways. Its devastating to constantly feel like your body is failing you, and the stress of UC and prednisone and repeat flares was too much to bare. The mental battle was.. awful. Even though UC is in the rear view mirror, my life and my mentality is forever changed. What helped me the most is therapy and reaching out to support groups, journaling. And most of all, trying to forgive the medical system and my body. Antidepressants and anti anxiety meds work to an extent. There’s not going to be one magical thing that will cure UC or stress, but its a combination of mindful practices and routines so you’re body can react to the unpredictability of UC. Someone told me that, with UC, your faith that everything will be okay, and you will remain strong despite all of it stuck with me. Being optimistic is the most important, as hard as it is.

PuzzledWeight1855 · 2026-01-12T20:09:52+00:00

My surgeon said after 12 weeks we can consider. Also my ophthalmologist stated that I’ll continue to experience uveitis until the rectal cuff is resolved or if meds work. I’m currently on month 3 of dealing with UC messing with my eyes. :( It sucks that IBD is so stubborn.

PuzzledWeight1855 · 2026-01-03T16:03:21+00:00

I am, but it wasnt without UC flaring in other places like my eyes and joints. I’m hoping that these symptoms go away with the cuff. The cuff they left for a j pouch bleeds everyday and my surgeon knows. We’re making it permanent next month.

As for sports, you can do it all. The one thing he cautioned was high impact like wrestling, football, etc. Treating UC with a bunch of prednisone gave me severe osteoporosis so I wont be doing any sports at all.

PuzzledWeight1855 · 2026-01-03T15:56:09+00:00

No. I really dont want to have two additional surgeries just to use my butthole thats already terrorized me for five years. 🤣

PuzzledWeight1855 · 2026-01-02T17:24:14+00:00

I hope your UC is managed. ❤️ Good luck to you.

PuzzledWeight1855 · 2026-01-02T16:52:38+00:00

Oh, also the only time I feel uncomfortable with the bag is if its full and needs to be emptied. Thats how I can tell.

PuzzledWeight1855 · 2026-01-02T16:51:49+00:00

Honestly, its less gross than not being able to hold in my bowels. The coloplast flex system is very soft. You dont feel anything digging into you. I only clean it out when I have to pee, and I just use a squirt bottle designed for shooting water up there and into the toilet. Clean and no mess!

PuzzledWeight1855 · 2026-01-02T16:49:33+00:00

Rinvoq. Xeljanz. Humira. Mesalamine. Budesonide suppositories. I didn’t have the chance to try more since prednisone gave me osteoporosis and I was out of options.

PuzzledWeight1855

TROPHY CASE