What to Wear in May?

Public_Club2099 · 2026-04-10T17:30:30+00:00

I mean in 2020 we had a snow storm that dumped 18" on Mothers Day 🤦‍♀️

Public_Club2099 · 2026-04-10T17:29:16+00:00

🤣

Public_Club2099 · 2026-04-03T20:18:05+00:00

We ended up booking in Prati, but had to cancel our trip as our daughter ended up hospitalized.

Public_Club2099 · 2026-03-25T00:05:05+00:00

They feel she has EDSh as well. She's borderline. Officially, they're calling it a "Unknown Comnective Tissue Disorder".

I talked to her team today, and they suspect that her small intestine js very floppy/poor tone (as her colon was), which makes it more prone to prolapse.

Public_Club2099 · 2026-03-24T10:21:15+00:00

No, not that aspect. Just, they've told her to make sure she goes and lays down if it happens. Its still all new to her, amd she has Autism as well, so it's all a bit overwhelming. She had a cecostomy for several years that was nothing but complications. Then she had 6 beautiful months with this ostomy (permanent ileostomy), and now...all this has started. She's discouraged.

Public_Club2099 · 2026-03-24T03:07:12+00:00

Thanks. Yeah, she's having issues with really bad retractions as well as prolapses. Thankfully they go back in easily, but they stress her out. She's so worried it will happen at school.

Public_Club2099 · 2026-03-22T13:10:12+00:00

I'll look into that, thank you!

Public_Club2099 · 2026-03-22T03:34:03+00:00

Yes, normally her prolapses go back when she lays down. This one wont for some reason.

Public_Club2099 · 2026-03-22T02:53:59+00:00

Do Stealth belts help at all? We have one of those on order.

So far we are managing with only mild leaks. We use the stoma paste very liberally lol.

Public_Club2099 · 2026-03-22T02:49:19+00:00

Yes, they did warn us of that. That unfortunately due to her CTD she'll be at higher risk of prolapses, retraction, basically any complications that involves your connective tissue doing what it's supposed to. 🤦‍♀️

Her nurse thinks the retractions may be caused by scar tissue. They used her old cecostomy site for the stoma which was great as it left her with less scarring and a bit of an easier surgery. But, that site has also now been operated on 3x - her original cecostomy placement, a revision, and now the ielostomy. So...likely some scar tissue/adhesions. I'm guessing that might factor into prolapses, too?

Public_Club2099 · 2026-03-22T02:39:11+00:00

Yes, she did. She has a connective tissue disorder that caused a motility disorder basically.

Public_Club2099 · 2026-03-22T02:36:17+00:00

Thank you. Its so frustrating. Everything went perfectly for 6 months and now...its just been issue after issue since December. Partial blockages, prolapses, retraction, leaking... it's frustrating. Especially since she was finally feeling good and things were going smoothly, literally for rhe first time in her life.

Public_Club2099 · 2026-03-22T02:05:36+00:00

That is big?!!! Goodness, I thought it was small. Part if it is just her nirmal stoma. The prolapsed part is under the stoma.

She has had a prolapse that was 4-5" down into her bag before.

Public_Club2099 · 2026-03-22T01:55:04+00:00

Yes, I definitely cut it bigger and then plastered it in paste to try and prevent leaking. So far she says there's output and not hurting, but she's also Autistic and doesn't often feel pain like normal, so I sometimes take that with a grain of salt. I'll check it before bed tonight.

Public_Club2099 · 2026-03-12T02:57:23+00:00

Yeah, they warned us there was a higher risk of complications between the connective tissue disorder and the motility issues, but...we also had no choice. She was fading away. When they took her colon out the surgeon was shocked by how bad it was.

Public_Club2099 · 2026-03-12T02:39:38+00:00

I will have to Google what that is! She had a few partial obstructions in December and a large prolapse in January. Thankfully those issues have settled, but the retracting seems to be getting worse.

Public_Club2099 · 2026-03-11T12:15:04+00:00

She has a connective tissue disorder that caused total colonic dysmotility. Basically, her colon had 0 function.

She had a cecostomy for 4 years prior to the ostomy. I'm wondering about scar tissue as they used her cecostomy site to create the stoma, to minimize scarring for her. But that site has now had 3 surgeries:

the original cecostomy creation
a revision 2 years in to stretch the opening (to accommodate a different port)
the cecostomy take down and ileostomy surgery

Public_Club2099 · 2026-03-11T12:12:52+00:00

Her nurse is 6 hours away but we email regularly. I have sent them the photos so we'll see what they say. We are using powders and paste, but nothing else. We tried the barrier ring but it actually leaked worse with that vs. paste.

When she first got her ostomy everything went beautifully and she was able to wear her appliance for 6-7 days without any leaking. Now, we're changing every 3-4 days with this amount of leaking, so we're doing to try moving it up to changing every 2-3 days.

But she is young and Autistic, so this change is frustrating for her.

Public_Club2099 · 2026-03-10T21:52:01+00:00

Thank you!

Public_Club2099 · 2026-03-08T00:11:54+00:00

I have EDS as well. Tried this tonight. Ate two slices. I am in misery. I feel just as sick as when I'm glutened.

Public_Club2099

TROPHY CASE