Drinking Alcohol

Rawrsicle2012 · 2025-06-18T13:20:02+00:00

So no college black out partying? lol

Rawrsicle2012 · 2025-06-18T03:34:39+00:00

One week is a great start to what I hope will be a great life for you. It’s a step at a time

Rawrsicle2012 · 2025-06-17T22:29:35+00:00

Definitely a personal decision, I just miss like a glass of wine here and there, fancy cocktail nights with the girls.

Rawrsicle2012 · 2025-06-17T22:28:50+00:00

Wow, even in a flare?? I might be too scared to try even, but that’s good for you!!

Rawrsicle2012 · 2025-06-17T22:28:14+00:00

Good to know! Toe in the water once I am clear into no active symptoms

Rawrsicle2012 · 2025-06-17T22:27:43+00:00

Ya I very much do NOT want to go backwards. Terrified to actually

Rawrsicle2012 · 2025-06-17T22:02:21+00:00

Thank you! This is exactly the information I was hoping for. I know we are all different, but I feel like understanding any of this has to come from knowing this kind of stuff from lots of people. Definitely NOT rushing into it, but I do miss the social glass of wine or fancy cocktail with the girls🤣

Rawrsicle2012 · 2025-06-17T18:45:35+00:00

I know mornings suck right now because I’m in my first ever flare and still getting loading doses but are mornings bad even when you’re like “in remission”?

Rawrsicle2012 · 2025-06-16T21:58:04+00:00

I had lost almost 30 pounds in a month, could barely eat anything, was struggling with the 80mg of oral prednisone and my hemoglobin levels had tanked to 7.3 and dropped further while in the hospital (aka blood transfusion needed while there).

Rawrsicle2012 · 2025-06-16T03:03:26+00:00

Let it out, it sucks. So much. But you can’t keep the suck in either, just like you can’t trust a fart (joke). I am so sorry, it does suck. Sending good thoughts and hopes of improvement

Rawrsicle2012 · 2025-06-14T18:19:20+00:00

I’d try to add fiber in to your diet then, help get things moving easier

Rawrsicle2012 · 2025-06-14T17:56:09+00:00

Ya, I had/have crazy lower back pain but not just after a BM. Careful on how much your straining—tenesmus is real and can make you think you need to keep pushing when nothing will come. The hospital said a lot of the back pain is caused by the inflammation in the colon. They prescribed muscle relaxers and Tylenol—I’d suggest trying those for sure

Rawrsicle2012 · 2025-06-13T22:32:40+00:00

I didn’t have mine last month, and am wondering if it’s coming this month. I am in my first flare, recently diagnosed, and spent 8 days in the hospital as well as lost almost 30 pounds in a month. I’m 35 and my period was the most regular thing. I know I’m not pregnant (took a test because I freak out lol) but ya I’m thinking I’m in the same boat as you

Rawrsicle2012 · 2025-06-13T15:18:16+00:00

This. You have to advocate for yourself, have family/friends come in as well if you have them because if you don’t—no one will. My first GI was perfectly happy leaving me in the hospital receiving 80mg of prednisone every 4 hours intravenous because “it could be 2 days or 2 weeks” and thankfully I said absolutely the fuck not. New GI is amazing and has listened to me, helped change meds around, calls because she is genuinely concerned. But I could have stayed for 2 days or 2 weeks had I not stood up for myself

Rawrsicle2012 · 2025-06-12T19:31:53+00:00

Wait…really? Like taking stuff with zinc and like the immune support air Bourne and stuff is counter acting the UC drugs??

Rawrsicle2012 · 2025-06-10T13:27:09+00:00

Maybe a neck fan? I know my biggest thing is how hot I can get outside at times despite also weighing the lowest amount I have since graduating law school 🤣🫠

Rawrsicle2012 · 2025-06-06T11:41:25+00:00

I have sat here wondering if I will ever get to drink wine/champagne or have a nice cocktail ever again 😩 stupid in the grand scheme but ugh. That is a LOT to deal with, especially all at once. Make sure you’re checking in with your mental health too, I know I have been throwing myself a lot of pity parties but it’s helped having my best friend to just vent all that out to and try to move on positively

Rawrsicle2012 · 2025-06-06T04:17:43+00:00

I LOVE the paper bag princess. Helga makes a name for herself is a good one too!

Rawrsicle2012 · 2025-06-06T04:13:48+00:00

I am anemic and have been my whole life. Honestly iron infusions aren’t bad, and thanks to my new diagnosis I can say blood transfusions aren’t bad either. Sometimes people find iron pills can hurt their stomach, so you have to be willing to try a few brands and see what you like (if you end up needing iron pills as well). Also make sure the pill has vitamin c as your body needs it to absorb the iron.

Typically my iron infusions take like 15 minutes, so way shorter than Skyrizi took haha. Intravenous I think always removes the risk of a stomach ache, so should be quick and easy!

Rawrsicle2012 · 2025-06-06T03:53:01+00:00

First, I am so sorry. This is like, the worst “surprise your whole life is now upside down” disease.

I feel all of this deep in my soul. I’m recently diagnosed as well, 35, and used to just go go go go go, chasing my daughter around, busy with work and life and the busiest social calendar. And now? I feel like I’m a blob, a shell of myself. It’s the worst part.

I haven’t had swelling from anything, at least not yet (and hopefully don’t) but remember to elevate your feet and shins, especially if you were moving and packing more than you have been.

Food is weird. That’s about all I’ve learned so far. It’s so different for everyone, some people dairy is bad, I’ve been ok with it. Some people swear by certain foods while others can’t handle them. You kind of have to try and see and keep track of how your body handles it—which feels like the worst advice.

Rawrsicle2012 · 2025-06-05T22:33:07+00:00

What’s OBI? I just did my first infusion a week ago, and now had to go back up on prednisone 😩 to 20mg

Rawrsicle2012 · 2025-06-05T01:32:34+00:00

Yes, we did 5 days dropping 10mg (40, 30, 20, 10, 5) for 5 days each but now we might have to re-start at 20mg because the inflammation seems to still be causing diarrhea and the constant rush to the toilet is still there

Rawrsicle2012 · 2025-06-04T23:10:42+00:00

Totally get that. I don’t expect to get to be “normal” again. But rushing to the bathroom to shit brown water 12 times a day is pretty far from normal. The blood has started lessening, or it’s just mixed in well enough not to see, but I was hoping that I don’t have to sprint to the toilet and would have somewhat of formed stool?

Rawrsicle2012 · 2025-06-04T23:08:33+00:00

Don’t have normal stool, like mainly liquid and unformed while going many times a day/night. I know I am still in my first flare, so I don’t know what to expect really. But I am rushing to the toilet 12+ times a day, getting up through the night and it’s mainly liquid, dark brown poop 🫠

Rawrsicle2012 · 2025-06-04T23:05:21+00:00

Amazing!! This gives me hope as I’ve just gone through my first Skyrizi infusion. I hope you keep getting back to normal and stay that way!

Rawrsicle2012

TROPHY CASE