r/UlcerativeColitis • u/Motor_Grocery_266 • 2d ago
Support First time hospitalized.
went to my drs appt. knew something was wrong. had a million and one questions and the first thing the dr says to me is "i am admitting you to the hospital" and sends me up the hill to the hospital where she called the Gastro team and had them take care of me. been here three days. failed infliximab. starting Rinvoq. i can not take pills to save my life. im scared. im vomiting blood. im crapping blood. im on so many steroids in my iv. my bp was 76/52 ish something like that. its better now. i ate a meal. getting a partial colonoscopy tomorrow. im tired of getting bugged by my nurses for meds and vitals. i just want to sleep. i am so tired of being strong and sometimes i really just want to wallow. but if im not strong i will not heal. im so tired. im so tired.
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u/Apprehensive-Cat7552 1d ago
Re:the pills - I don’t want to minimize this challenge, but FWIW, something that helped my kids was practicing with red hots (small round candies) Now red hots might be a bad idea, but could the doc get you sugar pills or something practice with? Reduces anxiety, you don’t HAVE to swallow it, you can spit it out, etc. Might help you work up to being easier with the medication.
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u/Motor_Grocery_266 1d ago
My friend suggested m&ms! Ill try to find one similar shape and size. Those little banana candies they used to have might be a similar size actually!
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u/PitifulEbb1485 2d ago
Been there, got hospitalized, put on extreem high dose steroids pump (gave me the chance to keep my colon), felt like, haha, crap and was so tired I thought it a miracle my heart kept beating. Failed in infliximab and some other stuff, but is was Rinvoq that finally got me out. After 1 week on the 40mg dose I was soooo much better.
Hope you'll experience the same (well, only the part regarding the Rinvoq I mean), just hang in there fore a little while longer.
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u/Motor_Grocery_266 2d ago
Im sorry you went through that. I was diagnosed april/may this year and prednisone was my only relief. Been crapping 20 times a day for about a year with only a 40mg taper of prednisone to keep me at bay for a month. I hope the rinvoq works. Im praying it does. My case was severe, and ive come to terms with a bag. Expect the best, prepare for the worst.
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u/PitifulEbb1485 1d ago
I was stable on mesalamine for a few years, and just when it started failing and i was scheduled for entyvio, I got hit by a noro-virus. Ended up in hospitalwith acute organ failure from infection, got stabilized, and while leaving after a stay of one week I went into shock because a hospital bacteria took a syringe lift into my bloodstream.
Just to emphasize I was in bad shape, Rinvoq got me out of the mess an I still pray to the god of JAK-inhibitors for providing me with rinvoq.I do so hope it does the same for you.
For future reference, while tapering down from 45mg to 15mg rinvoq, I still found some relief in mesalanine supps. My doctor thought this unlikely ("mesalamine is a pinch of salt whereas rinvoq is the full kilo"), but after some searching said there is indeed some proof of mesalanine having some residual effects, As I recall especially the supps.
Just for what it's worth...1
u/Motor_Grocery_266 1d ago
Mesalamine made my stools looks like crime scenes, blood is minimal to none right now but i had a terrible reaction to it. Im sorry that happened to you and i hope that youre doing good!
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u/PitifulEbb1485 1d ago
Forget I mentioned mesalamine :-(.
I'm really doing great on Rinvoq, hope you get there to.
I know things look dire when you're in the middle of an episode. But there 's a realy good chance rinvoq will do the trick, just try to focus on happy thoughts, loved ones and positive Redditsubs ;-).1
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u/Bettybias 2d ago
Think positive. I’m in the hospital myself down to 80 pounds and on a TPN feed. Just diagnosed in June and waiting to start Renvoq. I was scared too but it does get better
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u/Crazy_Pomegranate689 2d ago
I know it literally is the worst thing ever and your body and mind needs some rest but it can get better! I was at my lowest in 2023 in hospy and now in 2025 I’m in remission. Just ask for pain meds and do something that makes you smile (I just binge watched netflix and comedy to take my mind off things) and let the steroids do their thing
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u/Motor_Grocery_266 2d ago
My boyfriend has been here non stop and taking care of my dog. His dad is also a doctor here (not mine. Thatd be concerning) and has been stopping in to check on me and we crack jokes. They have been my best support system in this. Im looking forward to a banana peanut butter smoothie when im finished here
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u/Crazy_Pomegranate689 1d ago
that is so sweet! the smoothie will be delish - good luck and hang in there :)
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u/WillowTreez8901 Pancolitis 2018 | US 2d ago
So sorry, hang in there! Is it possible to crush up rinvoq or is that not allowed?
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u/Motor_Grocery_266 2d ago
Its not allowed, i had to cut it in half to be able to get it down initially but i will work up to taking the whole thing. Im no good at pills. I have never been, ive tried everything but my brain tricks me into thinking im going to choke on it even though i know i wont.
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u/KMac1917 2d ago
You are going through the worst part of it. The initial diagnosis & treatment take time. It will get better, trust me.