Can’t catch a break

Bacon Girl said...
Thanks guys. I left a message with the hospital social worker to see if she can help me with all of this. Also going to call the Rinvoq manufacturer and see if they can send me it for less. I do know Simponi’s manufacturer was amazing and sent me Simponi at no cost while I had no insurance several years ago. I just know Medicare is so limited with what kind of assistance you can get. Trying to get a hold of someone who can actually help is the hard part. I called the medicare number and the lady I got said she can’t give any opinions on plans or what plans cover Rinvoq. I told her I was asking for advice and facts on plans, not her opinion. She hung up on me! That was after being on hold forever so I officially hate them.

Try calling Medicare again. I have been dealing with them and the person I got was so helpful. I was on hold for awhile but a recording comes on and asks if you want a call-back. I said I wanted a call-back. They called back within 1/2 hour.

Thank you ladies! This was very helpful! I just got a letter that I was approved for the extra help program but I need to call and see if this includes Rinvoq. That is honestly the only drug I care about since I have paid out of pocket for marinol and dermatologist meds for a while now.

Have not called this week due to prepping for my scope since Wed. I had my partner write “Hey! My eyes are up here” on my right butt cheek since I have written a message on my butt for like 12 years now. I had the colonoscopy yesterday under conscious sedation. I was informed by my good friend that the doctor did not order an anesthesiologist to his OR that day so the nurse would be administering conscious sedation. I freaked out since I still have belly pain but it worked out. The fentanyl and midazolam combo was extremely strong. I was completely asleep and not aware of it happening. I barely remember anything that happened yesterday but had very severe nausea and could barely walk. I slept for 2 hours when I got home. Was not even hungry at all afterwards but managed to eat a cheeseburger and hot dogs around 7 pm just to get some nutrition in. But the amazing news is that I am in endoscopic remission! I was completely shocked but my bloodwork and stool tests have been great on that end so I guess the pain I am having is something else. I will schedule an appt to go over this with my nurse since my doctor is impossible to get an appt with. I had the scope with a doctor in the practice who is an IBD doctor too but I have only met him a few times at the hospital when I am in there. I guess prednisone and rinvoq fixed me right up! I was totally not expecting a great scope but it was one of the best I have had in terms of appearances which is insane since I was still very ill in April/May.
I just still get this stabbing pain a few inches above my belly button and do have my left sided and right sided daily as well. I am wondering if it is all just colon soreness from being sick. I have had an ultrasound, ct scan and now the scope and don’t know what it is. I wish he did an upper scope too just to check in there so I will probably have to go back for that. But I will still take this as a major victory! I am still feeling nauseous today so will probably take more zofran and ginger. I never get nauseous/upset stomach after the scope so it must be from those iv meds. I always get propofol and zofran as the med combo and will definitely request iv zofran next time if they dont have an anesthesiologist again.

Congrats on the good scope!!! I keep hearing good things about Rinvoq. Glad you found something that works!!

Awesome news about your scope, woohoo!! Get the biopsies pathology in hand and let us know the results 😉

Hope the abdominal pain source can be figured out. Where exactly is the pain?

q

Thanks quincy! I dont think any were taken this time. It doesn’t say on the paper he gave me and I dont remember what he said after I woke up. My bf doesn’t recall anything besides “your colon looks great and to continue rinvoq.” I was still extremely drugged out and dont remember getting home. My pain is mainly a few inches above my belly button on the left side.

Serenity, would it say on there like “biopsy taken at this section and this one” or would it not be mentioned? I read through it and it talks about the regions of the colon but not saying a biopsy was taken. My bf Sean is very shy and does not ask questions. I wish they would speak to us when we are more lucid. I honestly don’t even know how I got in the car or in the house. It is all a blur. Before they wheeled me back, all that I said was that I was in a bad flare this year and to be gentle with my colon. I didn’t think to mention biopsies since they have always been taken no matter if I am flaring or not. Uhh was it a waste of a scope if none were taken?? I am so annoyed about this.

"I wish they would speak to us when we are more lucid."

Amen to that!!! I am still seriously annoyed that my GI talked to me RIGHT after they stopped the sedation and I remember only 1 sentence of anything she said to me. Plus, I had told her during our prior phone appt that I don't remember anything she tells me right after the scope. It's almost like she did it on purpose.

The report "usually" mentions taking samples, but I wouldn't be surprised to find a GI forgetting to mention it.

I guess the thing to do is ask him next time you speak to him. Or send an inquiry if you have that "portal" thing where you can make inquiries (I don't).

No it wouldn't be a waste of a scope, there is still a lot of info to be gleaned from looking at the state of things.

Bacon Girl, congrats on your scope! My gi uses 2 different nurse anesthetists to give conscious sedation. They go to school & undergo training to do this. I have to wonder if this is what the gi used. Both are great, right before they give me the medicine they ask if I am ready for my margarita, lol. I go out like a light & remember nothing & I am always groggy waking up.

It is illegal for a nurse to give a patient anesthesia of any kind, that would leave a hospital or facility wide open to medical malpractice.

I think I would send a message on the patient portal asking if biopsies were taken, I would be shocked if the dr didn't.

I made an appt for Friday to go over stuff with my nurse and ask if any biopsies were taken. If they weren’t, I assume he didn’t think they were necessary and I just have to go with his expert opinion on it. Can’t do anything about it now.

Conquer thank you! I have been on 30 mg for maybe 1.5 months so far. I did not notice a difference dropping from 45 to 30. Do you know why they dropped you all the way down to 15?

Straydog, I am wondering if they just call themselves nurses here. The lady that administered my sedation also rolled me back to the room and introduced herself as my nurse for the procedure. I took a look at my scope note and it said “sedation administered by endoscopy nurse.” All I know is that I wish they had given me zofran because my stomach was extremely upset afterwards. I was hugging my toilet bowl when I got home! I also think it is weird that biopsies probably were not taken but I can’t go back in time at this point so I will just ask my nurse Friday.

Flowers, thank you! I was definitely surprised that my scope looked this good so quickly. I wanted a prednisone-free scope so it worked out.

Serenity, it totally sounds intentional but they have to know we won’t remember crap or be able to have a lucid conversation. I think an appt afterwards to go over it should be necessary for everyone.

CcinPa, yeah I thought so too but maybe this doctor I had a scope with doesn’t biopsy everyone. I will ask my nurse Friday. I assume if he saw something concerning he would have biopsied it. I had a few last scope due to a polyp being removed

Happy to hear this good news Bacon Girl!! I hope you are feeling better soon, I am weaning off prednisone myself (from 40 to 30 last week) and it’s not something I would wish on anyone. Can you ask if they take pics when you have your follow up? One of my first doctors sent me home with pictures during a colonoscopy and I’ve asked for them ever since, they just print them out for me and it’s helpful to see