GI told me I couldn't have twilight sedation or I'd have to be kept for 4 hours...

Update: I just spoke to the endoscopy center and they said there is no such rule. They said you only have to wait 1 hour after twilight sedation and they tried gaslighting me and saying my GI must have said wait "for an hour" instead of wait 4 hours. But he specifically said i'd have to wait until 4:30 to leave (scope at 12:30) and my dad was in the room too and the anaesthesiologist said the same thing when I checked with her!!! If it was a one hour wait, that wouldn't be any issue. Were they just trying to make money off of me? MAC require an anaesthesiologist to be present.

I had another horrible scope experience yesterday with my current GI. They made me get "MAC" anaesthesia again despite having a horrible reaction to it in November. They told me if they gave me twilight sedation, they would have to keep me for 4 hours, despite having my dad there to drive me home. I've always had twilight sedation with all my other GIs and no one ever kept me any length of time afterwards. Is this a new rule or are my GI and the anaesthesiology nurse I spoke to clueless? MAC makes me sob uncontrollably and feel suicidal as soon as it wears off for the rest of the day and evening. It's very scary. It also gives me zero appetite despite starving myself the day prior for prep. I'm still not hungry the next day.

Can someone please tell me if this is a new rule with twilight sedation or something? I cannot find anything online that confirms what my GI told me and I think he is full of crap.

And he told me to switch from Delzicol to Lialda and won't let me start Xeljanx since the scope only showed mild inflammation. It was only mild because I just finished a course of prednisone! I've been stuck on steroids for years now. I could not get off Uceris the entire 6 months I was on Stelara and now he says to stay on Stelara and switch to Lialda. What difference will Lialda even make...? I have a virtual appointment with an IBD specialist at UChicago tomorrow and hope he will make more sense than my local GI who has given me quite horrible advice these past 2 years.

Thanks. Yeah, it's been insanity. I spoke to the office manager and she gaslighted me and told me I probably misunderstood. I did not misunderstand. My dad was in the room and we both heard it loud and clear and I even questioned it! Manager said she asked my GI and he said he didn't remember the conversation and she said he had a lot of patients. This was just yesterday. How could he not remember telling me wrong information? They're lying.

Yeah, he was wrong. Pretty unreal. And now they're all gaslighting me and pretending I somehow misunderstood. My dad was in the room and it was very straightforward. There was nothing to misunderstand when he clearly told us "If you get twilight, you'll have to wait here until 4:30." He either didn't know or was trying to make more money. Propofol/MAC is way more expensive and they can kick you out immediately so the hospital gets more patients in and out.

Yup. $$$$$. That was my experience as well. No one even asked if I felt okay to leave. I almost fell over in the bathroom. I felt drunk. I really wouldn't care if I hadn't been LIED to and didn't have terrifying reactions to it. My GI just wrote me and said he doesn't remember telling me that. Well, isn't that convenient. Good thing my dad was in the room. I am not crazy.

All I know is when I get that twilight stuff, when i wake up I tell my doctor I'm in love with him....HAHA....I do this every single time....

Sara, since I have had UC they ALWAYS do biopsies -- even when in remission. Seems very odd your doc didn't do any. The biopsies would have shown if you have microscopic inflammation that isn't visible which is what I suspect you might have since he said you only had mild inflammation.

The only time I have heard that you don't have to taper pred is when you have been on it for less than 2 weeks or you are in the hospital when they have to do an emergency stop for some reason and they can monitor you. Why did he tell you to just stop without tapering?

PA-- I completely agree. Same here. I've NEVER had a GI not take biopsies. And I've had like 9 scopes now, I think. He told me right before the scope that he probably wouldn't take biopsies. My flare got 100 times worse after he scoped me in November, so I think he said he wouldn't take biopsies to try to reduce the chance of that happening again. But it happened again anyway... Well, and I'm now a week off of prednisone so it was bound to happen soon I've been steroid-dependent for a while now. But yeah, I don't know why he does half of what he does. I'm not seeing him anymore. There have been MANY problems with him and his office. He is a nice man, but doesn't seem to know what he is doing a lot of the time. The whole scope was totally pointless, in my opinion. I had just gotten off prednisone and I barely had any symptoms. Before the pred, I had lots of symptoms, so I feared the scope would look mostly normal. I wish I had refused it.

I'm not sure I totally understand your second comment. I've always been "asleep" during twilight. At least I never remembered a thing. Are we less asleep with twilight versus MAC? I guess I never knew. That's kind of frightening. I'd prefer they be more careful and go a little slower! The entire MAC flex sig only took 15 minutes from the time they took me out of my room to the time I got back in. I made note of the time on the clock when I left and returned.

Regarding the pred--Yeah, that's my understanding as well with the 2 weeks thing. I don't know why he told me that. I hate to make such long posts for fear of being super annoying so feel free to stop reading, but basically I've been on Uceris for 1.5 years now while trying all these biologics. Last September, I was trying Entyvio, and GI told me to continue tapering Uceris despite my symptoms returning and getting worse and worse. I eventually didn't follow his guidance and went back to daily Uceris but by that time, it was too late, and Uceris didn't help. He then scoped me in early November and I got really bad after the scope. I called the on-call GI who was his counterpart and asked if I should go to the hospital. He told me yes. I said are they just going to put me on steroids and can I just start pred at home? He said yes and that my regular GI would call in a script for me (I had some leftover at home). So I started pred and my regular GI wouldn't call any in for me. He told me "Uceris is equivalent to 40 mg prednisone. Go back on the Uceris." This was after me flaring on Uceris for over a month at this point! I had been on the pred for at least 3 weeks already and asked him if it's safe to just stop, and he said "I think it should be safe." I'm not even kidding. I think he was trying to help preserve my bone density, which I'm very concerned about too, but I can't just sit in the bathroom for 12+ hours a day and suffer in immense pain either.

And then he basically said the same thing just a few weeks ago when I was on Uceris daily, got my Moderna shot, and started flaring despite Uceris. He told me just "give it a few weeks." I made it 2 weeks and kept getting worse and told him I can't wait anymore, I need prednisone or to try Xeljanz or something. So then he told me ok, you can take some prednisone. But then he scheduled a scope 3 weeks into my pred course, and I asked if we'll still be able to see anything and if a second scope in 6 months is really warranted, and he said "Can you try to stop or reduce the pred by then?" So I did a super fast taper which I don't think was good for me just in hopes he'd see I was actually sick in this scope and let me switch to a med that might actually help me... I have had a migraine every day for the past 8 days that started the day I stopped prednisone and I'm wondering if it was from the super fast taper. I don't know. But it's been scary. That's not normal for me and that's what I'm seeing my PCP about tomorrow. It goes away with my migraine med but then comes back. Today it has stayed away so far. I've also been insanely stressed out trying to decide about surgery and stuff.

Yeah, I think maybe you are a little awake, but you don't remember any of it, so I really couldn't say for sure, haha.

Yeah, I tried seeing someone else after that, but he was mean and arrogant (didn't let me ask questions or have a say in my care...told me at both virtual appts that my face looked fat, but I didnt have moonface and wasn't on pred...). Then I just gave up for a while because it gets exhausting, and I felt fine on Uceris for quite a while. This state lacks good GIs, I think. Never had this hard of a time when I lived elsewhere.

Hi geezernow. Thank you! I completely agree...he should have taken biopsies. I was in so much pain all night I only slept 2 hours. I'm so mad I got this pointless scope because it set me back and now I just went back on 40 mg pred. If I would have skipped the scope, I probably could have just went back to Uceris after my pred taper until I figure out my next step.

Yeah, I've been looking for a new GI. I just had a virtual appointment yesterday with an IBD specialist out of Chicago. He was way better but that's 3.5 hours away. I want to meet with one of their surgeons so had to meet with a GI first. My local GI has told me incorrect things several times now, and always messes up simple things like not calling in scripts or bloodwork after he said he did. This latest scope was just the icing on the cake. He was a nice guy and he would respond to all my MyChart messages himself and very quickly. He also was the only GI I ever had who gave me anything (Tramadol) when I was in severe pain, so that was a huge plus because I get severe pain with flares. I have an appointment with a new local GI but they were booked out for months, so that will be in August. I've seen several bad GIs in this state now. Not sure what the deal is. I had finally found a wonderful one and then he moved to North Dakota end of 2018. Glad you have a good one for now at least! I'm guessing I will have my colon removed sometime soon so hopefully my local surgeon can just do follow-ups after that.