Hospitalized from Flare - Not improving

Hey guys,

I wanted to get some input/advice on a current bad flare I have going on. about 2 months ago I started a round of Uceris to try and tame a flare. It took about 3 weeks but symptoms finally started to subside and I felt "normal" for the last month of the dosage, as I was only prescribed 60 days. about a week off Uceris I began flaring back extremely badly and rapidly. Bleeding, unable to eat, lost 20 lbs in 2 weeks, extreme dehydration etc etc. I had been trying to get into my GI doc and they just kept saying she was too busy and had no appointments available to see me until Dec 27th. Eventually they did prescribe me prednisone and after a week of zero improvement, I've been admitted to the hospital.
They have started me on Iv steroids since Monday. I feel zero difference. Urgency, bleeding, no appetite, pain is all still the same after 4 days and yet they haven't changed a thing to my plan.
Is this normal? I feel like after 4 days of zero improvement they would try a higher dose, different method or something.
I was finally approved to start Humira, which I will as soon as we get the medication in. But I know it's not a quick fix to getting out of this flare.
Does anyone have any advice on if this is a typical process for a flare in a hospital? I feel like they are just letting me lay here and suffer

I would definitely get stool tests if you haven't already. Always something to consider when you don't respond to steroids: is there a pathogen making things worse? If it's clear, then I think the biologic is the right option. I am surprised they would go with Humira over remicade, but either could be very effective & they can work quite quickly. It's too bad it's taking so long to get you some relief. The other option would be cyclosporine, that might jump start remission, but you would have to have a GI who would be willing to treat you with it in the hospital. What dose of steroids are you on? 4 days isn't long, it can take longer. It sound sound fairly normal though, it takes time to get things to happen in the medical system & it takes time for healing to happen in the body.

Thinking of you Texas. Most of us here fully understand what you are going through.

I'm wondering why they didn't start you on abx? In some cases, if not most they will try flagyl/cipro along with roids to stop a wicked flare.

Good luck with Humira tomorrow! It's a quadruple dose so you never know, there may be improvement by Sunday!!

Fingers crossed. You will get through this.

From what I understand, Humira is self administered, so it will really be dependant on how you feel if you can go on your trip. Sorry it's so rough right now. My first hospitalization I didn't see much improvement the first few days. Hang in there.

Sorry to hear you are hospitalized and struggling. I hope you get the care you need and results as quick as possible.

Texas1992 said...
They have started me on Iv steroids since Monday. I feel zero difference. Urgency, bleeding, no appetite, pain is all still the same after 4 days and yet they haven't changed a thing to my plan. Is this normal?

There really is no normal, we can respond fast to steroids or slow. Depends on how severe our flare is.

Texas1992 said...
I've been on solumedrol ? Is that a stronger version of prednisone ?

Yes. It can be given with much stronger dosages by IV under nurse supervision. If the solumedrol doesn't kick in, you can ask for Cyclosporine instead, which is another strong rescue medication for us.

Texas1992 said...
Does Humira work that quickly?? Also if I take Humira tomorrow, my next dose will be in 15 days correct? I had planned to be on Christmas vacation during that time period.. (hoping I can still go)... is Humira hard to travel with if I need to take the dosage while on vacation?... or should I plan on not going altogether?

Humira can work quickly or take up to 6 weeks to show results, it varies on flare intensity. The majority fall somewhere in the middle, seeing results in about 3 weeks time. Dosing is variable, as you are hospitalized it's perfectly reasonable to ask for a higher dosage and more frequent injections, which might kick start humira and get you quicker results. Humira can be a good rescue medication when taken in larger doses with greater frequency. Ask your doctor on this, can you give me the highest dosage up-front and see if I respond quicker?

You can take humira pens with you during travel. We had a poster who hiked for several months while on Humira. The key is to keep the humira pens cold. You can put them in a refrigerator, in a cooler with an icepack, etc. You can pre-clear medications with airport security, and travel with them. You can often get extra humira pens if you are going to be abroad and traveling for a while.

You can travel with your pens but they need to be kept refrigerated or at least in an ice pack. You'll be given all that info today I'm sure along with training. I found instant relief after my first loading dose but I wasn't nearly as bad as you and frankly it really didn't do much for me after. I will warn you the injections are incredibly painful!!

I second the second stool test and ask for abx as well.

As far as your trip; it's up to you how weak you'll feel once you get out of the hospital. You've lost an incredible amount of weight etc. Humira wouldn't stop a trip but your body may tell you to slow down.

Well I just did my 4 doses of Humira. I only did 1 myself and ending up not pressing hard enough and it leaked on me...
I'm hoping that doesn't effect my results they were still very cold and the nurse had me do them all in the belly. They burned and I have zero fat so idk if that's why it hurt more..
They are recommending I don't go on my trip since it's my initial month of loading doses.... I'm hoping the airlines will refund my tickets
Praying this Humira starts working sooner than later

I really hope it works well and quickly for you. In your current state, I personally would avoid traveling, but that's just me. We have some members who are very tough, and have put up a fight, and succeeded at traveling in some dire situations. I know I wouldn't enjoy myself so I would rather schedule for when I was healthy.

Maybe you will start seeing results quickly between the Humira and the prednisone, and you will be fine to travel.

Usually I would take a bunch of pred to get better quickly, then I could travel, but since pred isn't helping you, that's not going to work. I agree with the retest for c diff. Better safe than sorry. UB is also correct that antibiotics help some people. At this point you should probably stay the course with what you're doing and reassess whether travel is possible in a week or so, but decide one way or the other sooner than later.

Grilled cheese and PBJ were always my go to. I really hope tomorrow is a better day for you. I also think it's smart that you're working on a refund. You need to focus on getting better. Traveling is stressful, especially while fighting a severe flare up.

They haven't told me if they do have a portal... but levels are all stable according to them. Ultrasound came back normal. They did another bacteria stool test with came back negative as well.
They basically don't understand why I'm flaring so bad... just that I'm becoming steroid resistant and it's taking longer to heal... they've done every test under the sun. Half of me is scared I'm just getting weak to where I can't mask the symptoms anymore and act like I'm fine.
I'm used to always having diarrhea and being uncomfortable but this time it just kicked me down. Usually I'm able to keep trucking but I don't know if my body finally gave in and said no more..
I'm down to 106 lbs at 5'6" when I was close to 130lbs in November, so I guess I'm not making up the fact that something is wrong! Right?... it's not normal to use the bathroom 10 times a day when you eat a piece of toast for the day. Or is it?

Does anyone have any meal suggestions to try at home for the next coming week to regain strength? I can barely walk in my state.. I'm trying to eat very bland as well because the hemmorhoids burn and throb anytime I use the bathroom still as well, but I'd still like to try and be eating as healthy as I can to get back.

I was in your position 6 months ago. IV steroids simply did not work for me. I had salvage therapy in the from of remicade. My symptoms took 3 weeks to improve and I lost 20 punhds on my 150lb frame.
Are they giving you CRP tests? It is important that the number is lowering.
Your symptoms may improve following this.
All the best and good luck.

They sent me home today. They believed if I can do my best to eat and drink on my own then I could try it. I'm extremely weak still so I'm staying with my parents and taking the week off from work to recoop and see if I can start gaining some weight.
I was able to eat some chicken and rice soup which is a start. I'm still having 10 plus BMs and lots of pain, bloating, gas etc. I can barely make it to the bathroom in time.
I'm hoping the belly pain subsides bc it makes it that much harder to eat when the instant food is swallowed that it sends your belly into twisting fits.
Does anyone have suggestions to ease that? I'm going to try a heating pad and see if it helps any but I'm just at a loss.. they did prescribe tramadol and dycyclomine but it doesn't seem to help that.
This forum is a good place to not feel so alone in all this. It's been such a frightening ordeal and I'm so ready to feel "normal". I don't even remember what that's like..

Big meals will feel uncomfortable. So, eat a little bit of food at a time on a more frequent basis. Eat a handfull of this at a time. Snack more frequently.

You can try ensure. It has a lot of junk in it though and gives some troubles.

Heat pads/hot water bottle help for temporary reluef of aches and pains.