Been a long time since I was on here!

I got them to give me Xanax (had a prescription already) in hospital. They didn’t want to since they were monitoring my heart, but I literally did not sleep a wink the first night or two. Hospitals are not made for sleeping what with the noise and the bloodsuckers and blood pressure checks. I had a roommate the first few days who kept her tv or radio on all night really loud plus she was sedated and her IV pump alarm kept going off every 30 minutes or so and she slept thru it so I had to keep calling the nurse. Hospitals do suck as far as getting rested so you can heal,

Luckily, I have my own room! I am in isolation. I know the steroids make it hard to sleep too but I got maybe 4 hours last night so I feel more rested. Anyone have any good supplements they use while on steroids to help you sleep? I am desperate!

They are talking about discharging me today or tomorrow on oral steroids and then just continuing Rinvoq. The doctors decided against vanco since they want me to still be able to use it for c diff without developing antibiotic resistance. I still have colonoscopy prep style diarrhea but they are just hoping this will improve with the oral steroids. I hope it does because it is tiring. My flares usually aren’t like this. It’s typically smaller amounts with more blood and not so much water. I feel like things are still unpredictable and my only chance now is Rinvoq kicking in at some point in the next month. It’s only been 19 days on Rinvoq so far so I hope by the 8 week mark I am better and off steroids.
Does this sound right? Sending me home on 50 mg to reduce by 10mg a week. I assume below 20 I will go by 5 mg a week. Ive been on 60 mg IV for 6 days.

Thanks for all the kind words and thoughts, guys. I always like filling you in on what’s going on since we are all in this together and whatever happens to me can hopefully be a learning experience for you or just something to keep in mind regarding treatments.

I was lucky that this flare never passed my transverse colon and didn’t affect my stomach or small intestine at all (usually always does). This was a more mild flare than my last one back in 2010-2014 even though the symptoms are still severe and it escalated so quickly after I got shingrix.

BG,

Good news on the room. I am astounded on the hospital. (I think the staff should be able to blow dart and tranquilize the noise makers....) Hospitals should never have 2 to a room. I get frustrated with the unwillingness of doctors to coordinate care with your primary care doctors. Those egos .....

On sleep supplements while on steroids.... I use 10 mg melatonin. It works in about 40 minutes and knocks me out... Even when I am on 80 mg of Prednisone. It does make me hazy the next day though so be prepared.

I hope you feel better soon.

Clo

Clo the screamers were still screaming as I was leaving last night! I knew I was in for another loud night so I am glad they let me go home. Honestly, they wanted to keep me longer but I begged to leave because I needed sleep so badly. I am on strict orders to drink a lot of electrolytes and still rest a lot at home. I told them I would come back right away if things went downhill though. Is 80 mg your flare dose? This hospital uses 125 mg as a flare dose but I asked it to be cut in half because of the side effects!

Good grief, poor you!
I am glad you are out of that hospital and I sure hope that the plan in place starts to improve things for you ASAP. Are you at a point where if you had to you could make it to the hospital your GI works out of? I certainly wouldn't want to go back to any hospital but if I had to get to one, I would most definitely not go back to that one you just left! I hope you find a way to slow down that butt faucet

Momto2boys the hospital I was at mon-fri was pretty nice! I have had several stays there in the past. The nursing staff is great and I had my own room for a week with a shower. It was really the screaming patients that made it bad and I wish the nurses actually could tranquilize patients but I guess they cant. I will never step foot in my GI hosptial’s ER again- i’d rather die on the street honestly. It was like a third world country and they dont have enough staff to admit people. The care there is horrible. I will probably solely use this hospital from now on since most of the staff is friendly and they have enough staff to admit people.

Poopydoop yeah I understand all about the drug and loading dose! It should’t mess anything up too much being off for 2 days so I am just going with the April 3 start date. They do not keep any patients on 45 mg longer than 8 weeks. My nurses were very clear about this so I have to get the 1 month bloodwork soon and then the 8 weeks bloodwork. My bloodwork usually shows everything bad going on with me but so do my symptoms. I will definitely notice if its not working as I taper prednisone. Just trying to think positive but I do know that it’s just a 50/50 chance that it will work or not. I saw like 4 GI doctors at this hospital and they all said my Gi doctor is one of the best in the country and some were residents under him. They told me he gets the complicated cases that no other GI can fix so I figure I just have to go with his medical plan for the time being! It just sucks that I cant get treated by him at the hospital since there isn’t enough staff.

BG,

IV steroids were usually at 120 or so. They'd start to taper me down a little the 3 days before leaving and then I'd usually go from 100 to 80 mg the first week. (If I was lucky) I'd be at 80 for a week and then go down by 5 mg. By the time I got down to 20 it was a real struggle symptom wise. So expect the struggle and yet hope that you may be surprised. I never knew how or when things would slide into place. Sometimes that 80 mg dose lasted for a month or so..... I too have osteoarthritis with no cartilage in my knees, thumbs, elbows and now 1 shoulder. I have to lose weight to have knee surgery or an ablation... So until then it's grin and bear it.

On the dosage. Talk to your doctor... Not just the nurse or the PA. You will have to be the squeaky wheel to get what you want.... And sometimes if they know that you really are determined.... Well that can speed things up or give you an extra week on a med that might suddenly start working.

I too dislike my GIs hospital. It's a learning hospital, staffed with not enough people and the people that are there in the ER are marginal. I've decided to go to the smaller hospital by my house and they can transfer me if they have to---but they are in the "Baylor" hospital family so the doctors and surgeons do call and collaborate between their facilities. I just can't handle the downtown ER again. They missed my case of shingles and sent me home, they let me set out in the waiting room puking for 4 hours and I kept telling them I was obstructed. They had to put a NGO tube down and so much air came out.... And then they offered me Tylenol for pain with an obstruction. LOL. What a bunch of idiots. To give the GI floor nurse an example of the pain level I had to threaten to twist off his... Well you get the picture.... Then suddenly he understood it hurt like holy heck and he was all over the place getting the pain meds...whining that I scared him with my "demands", I had to holler "I can hear you" And then... " I was giving you an example of the pain level that you could relate to because you surely weren't understanding anything else I said" . I told him to get adequate pain meds or I was calling an ambulance team and channel 4 news to come take me out of that hospital. My spouse was on the phone with my GI team and my CRS to get me the care I needed. It was awful. So when you say flare and bad hospital....my non working b-hole still puckers up.... LOL.... Sorry TMI.... I am sorry you had to go thru that but glad that you found a better place to land.

I had to take the melatonin last night and that 10 mg tablet made me fuzzy all day today.... But at least I did get some sleep last night. My shoulder was hurting so bad yesterday morning that I tried Tramadol. It just gave me a migraine and made me think crazy thoughts.... Nothing fixed the headache but the melatonin did knock me out for sleep. I need some good pain pills. Tramadol is not cutting it. I hope they gave you some.....

You hang in there and let us know how it goes.

You're in my thoughts and prayers.
Clo

Thursday Update. I started Culturelle almost a week ago for c diff prevention and that seems to have firmed things up a lot but the gas and pain is still really an issue. My nausea is 10/10 bad. I am nauseous as soon as I take my prednisone after breakfast (9 am or so) and until I fall asleep for a few hours at night. The nausea keeps me up very late because it is that bad so I am exhausted from not sleeping. Is there any help for prednisone nausea? I do remember my last flare that I always threw up my prednisone tabs so I am definitely on the verge every time I take those pills. I use cough drops and breathe spray to rid my mouth of the taste. They destroy my stomach and I was not having constant nausea with this flare before I was discharged on oral prednisone. IV pred gave me zero stomach issues. I currently take 8 mg zofran every 4-6 hours and then sometimes a marinol before bed if I am desperate (usually am). I dont know how people gain any weight on pred if it prevents me from eating. Any natural meds or remedies you know for pred? Maybe something to coat the stomach while still letting it absorb? My nurse just said to keep up with my nausea meds but its not cutting it. The plan is to do the 1 month rinvoq labs soon and then assess from there. She does want me to stay on it for the 8 week loading dose. If things are going downhill as I taper, then we will change biologics but they dont wanna add any immunosuppressants. I told her I would know pretty fast if I taper pred and rinvoq isn’t picking up the slack.

An annoyance for me lately is everyone saying that I look great (which I feel like is a lie). Even my nurse said on my telemed visit that you’d never know that I was even sick. I feel that this is a problem and is working against me. My neighbor said she couldn't believe I was on pred because my face has gotten so slim and I dont have moon face. It makes me feel that people are dismissing my symptoms and suffering. Like my hands and arms are covered in bruises from ivs and bloodwork and my belly is all bruised from blood thinner shots. I cover these things up obviously but I wish people would understand that you can still look ok but be so ill. I haven't felt this horrible in years. I figure maybe some of you can relate so I figured I would share. I didn't lose 45 lbs this time or become blue from anemia so I guess that means I look healthy? Just seems weird to me. Anyone notice this in your life when you are so sick?

But yeah. That is currently whats going on. Hope all you guys in remission stay healthy and you guys flaring with me get some relief, too. I went for a walk outside yesterday with my partner and couldn’t climb our hill anymore. My legs felt like cement. It still felt great to get some sun on my pale legs though. I feel like a total recluse.

Oh i totally get you.... when I was flaring badly I had so many people say to me "How are you - you're looking well!" when I was DYING on the inside. It was so invalidating. What exactly is "sick" supposed to look like? And funnily enough when xeljanz started to work, I remember my GI peering at me and saying "You are looking better than a couple of months ago"...seriously, only a trained specialist can really see the difference between flaring and healing....

I get it too. UC is an invisible disease often from the outside, especially if one isn’t in a losing weight stage. And I don’t like being a complainer so when people would ask how I was I’d always answer fine or ok. At least we have a safe place here where we can complain and know we are being understood.

As far as nausea, have you tried ginger? I remember reading on here about making ginger tea by steeping fresh ginger root in hot water. Someone on here used to juice it too. You can try a search but it was when I was flaring 6-7 yrs ago so I don’t know if it’s still here. Also you can get ginger tablets.

People are idiots. I'm very "fluffy"... Very fluffy... And I get that... Oh so and so has UC/Crohn's and they are so thin...... And then they tap their foot and look at me. I tell them to try taking 80 mg of Prednisone for months at a time for years and see how fluffy they get.... And while they are going thru that to eat only butter noodles, beef jerky, Cheetos or bacon cause it's all you can keep down. Idiots.....

On the nausea... There is another med they use during chemo. I believe its called Emend. It's for chemo patients and you can take it while taking zofran. My insurance would not cover it and for just a few pills it was very expensive. 40 to 100. Dollars per pill. My doctor was able to get a few samples. I think he called the company begging. It worked but gosh the cost was awful. I was too sick to see if there was a way to save even more money....Maybe you can contact the company directly? Cause it was worth it. But once it wore off It was rough.... I sipped ginger tea and spearmint/peppermint tea. Weak....just to flavor it a bit but it seemed to help... And the last thing we did was ginger ale with real sugar... Not the canned stuff--you gotta look for the bottles online and it'll tell you how much ginger is in it--plus Lays potatoes chips. The ginger ale was sorta pricey but I'd space them out. This didn't get rid of it completely but helped enough that I didn't want to cry because I was so nauseous. Plus I stayed on top of the Zofran every 4 hours. There were 2 dose levels... My GI went up to the higher dose every 4 hours. The higher dose helped more but it knocked me out and made me a little constipated. And finally.... We did SCD chicken bone broth soup plus threw in a few potatoes or noodles. We'd simmer that pot for a looong time and I'd just drink the juice and once the carrots got super soft I would eat a piece of that occasionally. My spouse just put the whole pot on the stove on low first thing in the morning and he kept it on low and kept adding water to it.... Then it'd go in the fridge that night and then back on the stove the next day.

I'm sorry you are going thru this. There's nothing worse than going thru a flare.... And no one understands it like other IBD warriors. So vent here when you need to.

You are in my thoughts and prayers. Hang in there,!.

Clo

PS. I forgot.... I'd nibble on ginger cookies. You can buy them at the store--but my neighbor made them with extra ginger and baked til they were dry and crumbly. They seemed to help some.

Post Edited (clo2014) : 4/27/2023 7:23:35 PM (GMT-8)

Oh boy this made me remember something my mom said to me before I was diagnosed with UC. I was telling her the possibilities my doctor had mentioned and Celiac was one of them. She looked me up and down and said "People with Celiac are skinny so I doubt it". I was heavier than I am now, and even now I am not overweight but certainly not skinny. That stung. Since then I've met other Celiac patients who are not skinny at all, even heavier than I was at the time.