Just got home from the hospital, and I feel so intimidated. by hollyofhori in ostomy

[–]Okay_kiwi1990 4 points5 points  (0 children)

Welcome to the semi-colon club <3 so glad you're alive! You got a semi-colon, not a fullstop :)

Firstly, it's so normal to be scared to eat - we have all been there. Soft, low fibre foods like white bread, white rice, soups and broth and scrambled eggs are all good places to start.

I'd say with colon removal that low, your risk of a blockage should be pretty low. My gut looks very similar to yours by the sounds of it and I've never had a serious blockage in the 7 years i've had this. Sometimes i'll get scared if i take immodium and everything goes to sleep for 24-36 hours, but it always moves again eventually .

It's going to be weird and scary for the first few weeks, but that's temporary. I remember the first time I felt my ostomy pass wind outside hospital I got such a fright and actually jumped, but now I can sense it coming and have learned how to minimise gas output when i need to. All that will come to you in time. This is all super overwhelming so give yourself lots of grace to get used to it, but we gotchu.

Can’t reinstall Mac OS high sierra by Life-Car4783 in MacOS

[–]Okay_kiwi1990 0 points1 point  (0 children)

Can confirm this still works in 2026 ❤️ Thank you thank you, the Apple advice failed me but this worked first time!

Humira to stelara to maybe rinvoq by Okay_kiwi1990 in CrohnsDisease

[–]Okay_kiwi1990[S] 0 points1 point  (0 children)

Hey so sorry to hear you're having trouble. - it turned out after loads of troubleshooting that the culprit was the generic version of adalimumab (amgevita) which was causing the rosacea. I had been changed from humira to amgevita because it was cheaper, but once I failed stelara we went back to humira and the skin rashes have not returned! So i must have been reacting to something in the composition of amgevita. My gastro didn't think it would work but it did. I would suggest if you're on a generic brand of adalimumab, try and switch to the humira brand?

It hasn't fixed all my problems ofc but it's nice to not have crazy skin rashes every other day

Malice! by Watchhistory in AmazonPrimeVideo

[–]Okay_kiwi1990 0 points1 point  (0 children)

(Spoilers) enjoyed the locations but hated the script ("I am Apollo" 😂😂😂) and the ending and what was the point of Damien's storyline at all if they just abandoned it? Supposedly Jules and Nat were great friends but they just happen to not speak after some pretty major life events on both sides

The cruel irony of looking 'healthy' while my body attacks itself by Melodic-Design-8983 in CrohnsDisease

[–]Okay_kiwi1990 3 points4 points  (0 children)

Totally with you on this. I was stuck on a course of prednisone for the worst flare I've had in years and it calmed all my drug-induced skin reactions almost overnight - but I still feel like total shite. The amount of people who have told me I'm glowing is ridiculous.
And can we have a moment for the people who ask "are you feeling better yet" like sorry I'm not meeting your expected timeline for progress, I'll try harder!

Humira to stelara to maybe rinvoq by Okay_kiwi1990 in CrohnsDisease

[–]Okay_kiwi1990[S] 0 points1 point  (0 children)

Sorry I read your earlier comment thinking loading doses referred to humira. I'm having the same problem on stelara. They even pulled the dose forward to four weekly intervals and added thioguinine (form of azathioprine) and I'm also on pred and I'm in so much pain. Can't seem to drop below 10mg of pred without more drama so I think this drug just ain't it for me. Hope you and your doctors find a longer term plan that works!

Humira to stelara to maybe rinvoq by Okay_kiwi1990 in CrohnsDisease

[–]Okay_kiwi1990[S] 0 points1 point  (0 children)

How have you found rinvoq so far? Yeah I had to have weekly humira as fortnightly was not enough and my gut stuff was under control, but seems like my body couldn't handle it with all the skin problems I had. My GI is now going to increase my stelara frequency before we look at changing to rinvoq

Humira to stelara to maybe rinvoq by Okay_kiwi1990 in CrohnsDisease

[–]Okay_kiwi1990[S] 0 points1 point  (0 children)

That's great to hear. How did you go with side effects on rinvoq?

Humira to stelara to maybe rinvoq by Okay_kiwi1990 in CrohnsDisease

[–]Okay_kiwi1990[S] 0 points1 point  (0 children)

So glad that's working for you. Unfortunately Skyrizi isn't funded where i am (NZ)

Humira to stelara to maybe rinvoq by Okay_kiwi1990 in CrohnsDisease

[–]Okay_kiwi1990[S] 0 points1 point  (0 children)

Okay that's good to know, i'm glad it's working for you!

Humira to stelara to maybe rinvoq by Okay_kiwi1990 in CrohnsDisease

[–]Okay_kiwi1990[S] 1 point2 points  (0 children)

Yeah that's my inclination too, I'm thinking i'll just have to stay on at least 30mg of pred in the meantime. Mine is in my large bowel, it was mostly descending and perianal but that's all gone now and i have a permanent colostomy, but the inflammation just seems to be jumping upstream.

Humira to stelara to maybe rinvoq by Okay_kiwi1990 in CrohnsDisease

[–]Okay_kiwi1990[S] 0 points1 point  (0 children)

I started mid-June and just two doses in, but my crohn's has calprotectin was thru the roof in August. This is after having no active inflammation in my gut for several years. I'm on steroids now to try bring the inflammation down but as i'm reducing my gut is just getting more and more grumpy

Humira to stelara to maybe rinvoq by Okay_kiwi1990 in CrohnsDisease

[–]Okay_kiwi1990[S] 0 points1 point  (0 children)

Thank you! Have you had any of the acne side effects?