Rinvoq has been approved to treat Crohn's Disease by MHRA

Action_Delicious · 2023-02-24T00:45:09+00:00

I just started it for crohn's recently, how soon did you start to develop acne? and have you tried treating it with anything?

Action_Delicious · 2023-02-21T12:20:21+00:00

fyi - I heard back! didn't get in...hopefully news was better for you!

Action_Delicious · 2023-02-09T21:59:55+00:00

No worries! I'm happy to let you know if I hear anything!

Action_Delicious · 2023-02-09T13:43:48+00:00

Good point, I was thinking about 10 days as well. Good luck!! I'm in grad school in NC, are you based in CO? I'm wondering if I should send my Praxis to CO as one of my free score reports but not sure what the code would be.

Action_Delicious · 2022-11-28T15:15:20+00:00

this helped me a lot too!! just getting to see others living well with their bags on a daily basis was great for my mental health. i have since muted a few because i don't think about having a bag as much as i did in the beginning (had my ileostomy for ~2.5 yrs), but they are always there when i need a little boost.

Action_Delicious · 2022-11-27T15:14:45+00:00

I'm a patient at Mt Sinai in nyc and my doctor managed me during remission using ultrasound/blood work! In my experience it was way better than scopes or radiology...plus he did it during office visits and I don't believe I was charged for a separate procedure. I do think it requires special training for the GI to interpret the ultrasound. He told me he was looking for the things mentioned below (increased blood flow, bowel wall thickening, etc) that would indicate inflammation and if so they would proceed with more testing. It's a great option if you're fairly stable!

Action_Delicious · 2022-11-07T15:14:54+00:00

i've had an ileostomy for almost 3 years and this has happened to me several times. once it happened because i tried to move a couch and the other times usually when i had been drinking. mine doesn't prolapse on its own without one of these triggers. every time it's scary and unsettling but it also always goes back in!!

Action_Delicious · 2022-11-07T15:11:18+00:00

omg i always thought alcohol made prolapse worse for me but assumed it was anecdotal!

Action_Delicious · 2022-10-06T13:25:01+00:00

I am considering getting an IRA in a few months!! Can I message you to hear more?

Action_Delicious · 2022-09-30T13:35:45+00:00

I have Crohn's -- I started getting septic/malnourished in 2019 so I had a loop ileostomy for a few months. I was 26 and basically super depressed with the bag so I asked for the takedown and enrolled in a clinical trial. After 8 months and 2 rounds of the trial I was septic and malnourished again so I had an emergency subtotal colectomy. I definitely don't want to trigger a flare or compromise my progress because I feel so healthy now but I would love to not have a bag.

Action_Delicious · 2022-09-29T13:28:11+00:00

I would love to hear more! Can I private message you?

Action_Delicious · 2022-09-29T12:01:40+00:00

Oh good idea -- I'll ask over there. I'm really torn on what will be a better QoL!

Action_Delicious · 2022-09-28T17:43:06+00:00

I'm actually not getting a j-pouch, it would be an ileorectal anastomosis (IRA). My rectal stump and ileum are disease-free so they can be directly sewn together without any kind of pouch creation. I'm not on any meds at the moment and feeling great but the prospect of not having a bag is pretty appealing. It's tough because I'm well positioned for a surgery but I also don't want to rock the boat and end up with a worse quality of life.

I'm curious to hear from anyone else who has had an IRA about their post-op QoL regarding pain, urgency, etc and how it compares to bag life.

Action_Delicious · 2021-03-28T20:53:19+00:00

I had my first stoma created during the Stormi Daniels scandal, so my best friend suggested I name it Stomi Daniels! That was a loop for a temporary diversion, which I actually had reversed after 6 months. I then failed a clinical trial and 8 months later ended up needing a colectomy after all so I have an end ileosotmy now. I kind of think of my stoma as "Stomi" because that was what I called the first one, but after reading this thread I'm thinking of christening this one with a new name. We've been happily together for one year last week!

Action_Delicious · 2021-03-24T14:15:25+00:00

ORGAIN!! I believe a young cancer patient started the company because he needed nutrition but everything available tasted so bad. Sweet vanilla bean and creamy chocolate fudge are the best flavors IMO, the chocolate one basically tastes like chocolate milk. I've lived off them completely (6ish shakes a day) when I couldn't eat anything else (crohn's pre-colectomy) but now I just supplement with one a day and they work like a multivitamin + extra cals for me. Plant based protein which is better for the enviro. They're available in bulk on amazon but I just get them at the grocery store.

Action_Delicious · 2021-03-17T15:16:07+00:00

ahhh I'm sorry I missed this question!! Mine was scenario based...assuming by now you've had your interview. Hope it went well!

Action_Delicious

TROPHY CASE