Been a long time since I was on here!

BG -- how are you doing? Did you get discharged? It's crazy that they don't send people to other hospitals if they are that short staffed. You might want to file a complaint with the state health department.

In hospital #3 today. My gi doctor called across town where they have beds available at a different hospital. I am in the er waiting to see what happens. He said I absolutely cannot be at home. He is worried the dehydration will affect my heart and other organs. Definitely hate being here. He basically forced me to go! They want me on 125 mg of iv solumedrol. Is this normal? I feel like I would rather just die .

Wow, that's a lot of steroids. I don't handle IV steroids well. I go emotionally insane. What a nightmare about the other hospital, too. You don't have to be there if you don't want to and feel you can stay hydrated at home. Demand pain medication. What a worthless ER to only give you Tylenol. I wish I could yell at them on your behalf.

There was one time the hospital was not managing my pain effectively and I called my GI and told him how much pain I was still in, and he made them give me pain pills in between the IV dilaudid.

Did you get the stool tests back yet?

Telemetry? Something like that, Flowers?

Did you get your stool test backs yet? I wouldn’t be surprised if you had c.diff, you got too sick, too fast after starting an immunosuppressant.

Hey guys. I got a room last night. Its a doible bed but no partner yet. That will be fun time for them hearing me! Hope I dont get one. Ignire all the types. I have been stabbed like 30 times the past few weeks so everything hurts and its hard to fix mispellings! All infections are negative. Inwas tested at the first 2 hospitals for a ton of psthogens. Unfortunately, all the doctors think my body could not handle shingrix and it led to me being hospitalized. It triggered an insane immune response and basically put my flare into disaster mode. I am not getting the second dose. They want me here for a week to get things under control. I told them id rather die than be on 125 mg iv steroids so I am on 60 mg. I am still having diarrhea but pain is a little less and this hospital gives dilaudid which I desperately needed. Hoping things get better. Not sure what the plan is with rinvoq. The pharmacy took it last night and will give it back when I go home. I am looking pretty thin and skeletal and that will prob get worse since I am on clear liquids. I will keep you updated! I meet with this hospital’s gi team today.

I'd get tested again, you've added steroids. And you don't know if the first place conducted the tests properly - seems like they were understaffed.

How high was your calprotectin? Yeah, I wouldn't waste time with more stool tests. Entyvio is one of the slowest-acting medicines we have. It typically takes months to even find out if it works.

She started it and then stopped it after 10 days because she didn't think it was working fast enough.

I don't understand why your doctors wouldn't have kept you on it, sorry. Hope you get better soon though.

Oh ok, my bad. It sounded like you were pretty much ready to switch to an injection or infusion in a few older posts. The doctors there seem kind of clueless. I sure hope you get to feeling better soon.

BG,

YIKES!!!!!

Holy Toledo Batman!!!!

Hang in there! Sometimes it's good to check out what other doctors have to say and why they think the way they do. Hopefully these doctors can get you back in remission or point you in the right direction.

I can say that.... now....I am very very hesitant to get that vaccine. (And so grateful that you shared your experience) One of the ladies in my support group told me horror stories about how badly she flared after her vaccine...but it was her 2nd one. It's been over 6 months and she is just now starting to come out of the flare. (But I think she sorta cheats on her meds and things....So she might not be a good example.) Still, I am rethinking my strategy.

I really do hope you start to feel better soon. The delaudid is good. They scheduled mine for every 4 hours like clock work so we could keep on top of the pain. So stay on top of that stuff... I'm glad you are in the hospital. The last thing you want is to become septic. The doctors need to get this flare under control asap.

Are you at a teaching hospital or are the doctors where you are at now willing to reach out to a teaching hospital or your previous GI? Sometimes that isn't an option--but you only know if you ask.

Hopefully you won't be seeing a roommate anytime soon. I hated having a roommate when I was on IV steroids. I wanted to leap out of bed and slap the living crap out of my roommate. Not a good thing..... So if that's you too.... You might wanna give them a heads up. I just tell them steroids make me very angry and not myself.... So they limited my roommates. (Plus my nurses that came into my room were either huge or refused to get within arms length. In my meaner moments I'd see how far I could push them into coming closer. I think I probably was like Jack Nicholson on the Shining movie.LOL) I was just plain scarry. So I completely understand where you are at with the steroids. Last time I was there they gave me something to make me more relaxed. I can't remember the name... But it did help... So I know that if you ask nicely they might be able to help you.

Please let us know how you are.

Your in my thoughts and prayers!

Clo

I definitely am not a fan of the Gi doctors here. You can tell they dont have experience with severe UC patients. They dont have a lot of compassion or bedside manner which sucks. They have my Gi’s cell phone number but I dont know if they use it or not. I told them I would like him consulted on my treatment plan. It’s like they are blaming me for the slow response to steroids!! Idk what today holds. We may try vancomycin or a colonoscopy.

I am getting zero sleep from all the patients. I have a lot of night time screamers/hitters in my unit and security was here for a while taking down a patient hitting a nurse. All the beepers and pagers were going off all night for these people. Its like a WWE match outside my door from 9 pm-5 am. Ive never stayed at a hospital with so many aggressive patients. I am holding a lot of water so my joint pain is horrible right now. Hurts to bend my knees and walk. Iv steroids really are the worst and Ive never taken such high doses before. I just wanna go home so I can sleep. The lack of sleep from all the fighting outside is really affecting me because I really need some sleep when I am sick. I wish I had the answers to this but I just dont. I think I would have had a better time just starting rinvoq without shingrix and then waiting for a while to get it. I had no idea it would make my flare so much worse. Guess we all learn from our experiences but I totally regret it. Never did I think it would land me in the hospital.

Hey, BG..... I've been following your trials and keeping you in nmy thoughts Hang in there!

Meg