Hospitalized from Flare - Not improving

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Texas1992
Regular Member


Date Joined Jan 2014
Total Posts : 27
   Posted 12/7/2017 5:00 PM (GMT -7)   
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 sad

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10096
   Posted 12/7/2017 5:44 PM (GMT -7)   
Well, I always responded pretty quickly to IV steroids: by the next day I'd be feeling miles better. That said, there are slow responders and non responders to steroids. People can start off by responding well to steroids, then - with repeated courses - become steroid resistant. You sound like you have become one of the steroid resistant.

What about your inflammatory markers? Have they gone down since starting the IV steroids? Also, have the hospital done any stool tests (for c. diff, etc.)?
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15435
   Posted 12/7/2017 6:34 PM (GMT -7)   
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.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

Texas1992
Regular Member


Date Joined Jan 2014
Total Posts : 27
   Posted 12/7/2017 7:07 PM (GMT -7)   
My inflammatory markers are still high. They have tested for c diff and everything has come back negative. A Ct scan showed I had severe swelling they thought was a blockage but came back okay. They did a sigmoid flex scope to check for an infection before starting Humira as well. He said visually I didn't appear to have any infections and he cleared me to start Humira tomorrow.
I'm just very frustrated to be here this long and still feel so horrible. I was already thin to begin with and I look like a walking skeleton... even just drinking a sip of water has me running to the bathroom.
I had been very hesitant to start Humira because of the side effects but now I'm praying it's my saving grace.

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 904
   Posted 12/7/2017 7:14 PM (GMT -7)   
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.
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 150mg imuran

Doing much better and more stable on Stelara. No remission....yet but closer!

IVIG on occasion.

Texas1992
Regular Member


Date Joined Jan 2014
Total Posts : 27
   Posted 12/7/2017 8:22 PM (GMT -7)   
I wondered that myself? I just feel like if I'm not improving, that we would try some hard hitters.
Does Humira work that quickly?? I was expecting it to take weeks before I saw results.
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?
I'm not sure how strict the guidelines and dosing are for it.
Tomorrow is the 8th and next dose would be the 23rd. My flight leaves Dec 20th and returns the 26th...
Oh the timing of these things sad

Spring
Regular Member


Date Joined Jan 2017
Total Posts : 113
   Posted 12/8/2017 5:18 AM (GMT -7)   
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.
36yr old mother of 3 Moderate Pancolitis 1/3/17. Hospitalized 1 week on Solumedrol, Delzicol. Apriso, pred, then switched to Balsazide Disodium 750 mg, and Uceris 9 mg 3 wks. Minor flare in August, in a more major flare since Oct 20. Acute pancreatitis from Balsalazide hosp. 2 days, starting Humira soon. Vegetarian whole life, Gluten free since 2008, dairy free

Texas1992
Regular Member


Date Joined Jan 2014
Total Posts : 27
   Posted 12/8/2017 5:47 AM (GMT -7)   
I was initially on Uceris, then after flaring immediately I tried it again for another week which to no avail.. then they switched me to oral prednisone for 4 days and since I've been in the hospital I've been on solumedrol ?
Is that a stronger version of prednisone ?
I'm also having a bout of extremely painful external hemmorhoids. So not only is the UC a factor, but having to go so often is just about unbearable.
Has anyone else had experience easing that pain as well? Hydrocortisone cream has done nothing and I've had the hemmorhoids since May of this year..
I'm just so ready to feel normal! I haven't had a real meal in over a month! The little things we take advantage of..

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 11047
   Posted 12/8/2017 6:31 AM (GMT -7)   
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.
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

U.C. = Unimaginable Crapnado

Post Edited (iPoop) : 12/8/2017 6:34:38 AM (GMT-7)


iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 11047
   Posted 12/8/2017 6:37 AM (GMT -7)   
And ask for a second stool test. As C diff tests are prone to false negatives. Not responding to steroids is a great big, waving red flag that it could be infectious/pathogenic in cause.

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 904
   Posted 12/8/2017 7:40 AM (GMT -7)   
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.
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 150mg imuran

Doing much better and more stable on Stelara. No remission....yet but closer!

IVIG on occasion.

Spring
Regular Member


Date Joined Jan 2017
Total Posts : 113
   Posted 12/8/2017 9:28 AM (GMT -7)   
The only thing I have ever found to help hemorrhoid pain (mine were thrombosed) is to wrap a piece of ice in paper towel, and apply directly until numb. Its such insult to injury, wish I didn't empathize.
36yr old mother of 3 Moderate Pancolitis 1/3/17. Hospitalized 1 week on Solumedrol, Delzicol. Apriso, pred, then switched to Balsazide Disodium 750 mg, and Uceris 9 mg 3 wks. Minor flare in August, in a more major flare since Oct 20. Acute pancreatitis from Balsalazide hosp. 2 days, starting Humira soon. Vegetarian whole life, Gluten free since 2008, dairy free

Texas1992
Regular Member


Date Joined Jan 2014
Total Posts : 27
   Posted 12/8/2017 11:49 AM (GMT -7)   
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 sad 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 sad
Praying this Humira starts working sooner than later

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 11047
   Posted 12/8/2017 12:25 PM (GMT -7)   
Yes, other's have said it helps to inject where you have a little bit of body fat. If you're injecting into muscle tissue then it will hurt more. If you don't have any fat on your belly, then look for a spot that has it. I've heard of others doing thigh, butt, or in a fatty area underneath the arm for injections and you can ask the nurse if there's a better area like one of those.

Icing the injection site before helps, some have said.

Depends on the airline, if you have travel insurance, etc. Some tickets are transferable/refundable and others are not, depending on ticket. If you have travel insurance than it should be covered. I'd call and ask.
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

U.C. = Unimaginable Crapnado

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15435
   Posted 12/8/2017 2:53 PM (GMT -7)   
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.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

Texas1992
Regular Member


Date Joined Jan 2014
Total Posts : 27
   Posted 12/8/2017 5:30 PM (GMT -7)   
I'm trying to get my flight refunded as we speak.. it sucks but it's part of it.
They had me do an ultrasound today and asked if my gallbladder had been removed, which it has not. I have no idea what that could mean but I'm hoping they didn't miss something silly.
Something about my liver levels went up today as well. But they didn't tell me what that meant either.. I feel so in the dark sometimes.
Half of me wants to say I'm fine and just go home! I'm unable to give myself any nutrition tho.. I've never been so afraid of food in my life. Usually prednisone ups my appetite but I want zero to do with it.
Going to try some soup and a grilled cheese and hope for the best. First meal in a week.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15435
   Posted 12/8/2017 6:29 PM (GMT -7)   
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.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

Spring
Regular Member


Date Joined Jan 2017
Total Posts : 113
   Posted 12/8/2017 8:09 PM (GMT -7)   
Does your hospital have a patient portal? I could log in while in the hospital and look at my labs and tests and then look up what things mean. It made me less in the dark. I hope you can get it refunded!
36yr old mother of 3 Moderate Pancolitis 1/3/17. Hospitalized 1 week on Solumedrol, Delzicol. Apriso, pred, then switched to Balsazide Disodium 750 mg, and Uceris 9 mg 3 wks. Minor flare in August, in a more major flare since Oct 20. Acute pancreatitis from Balsalazide hosp. 2 days, starting Humira soon. Vegetarian whole life, Gluten free since 2008, dairy free

Texas1992
Regular Member


Date Joined Jan 2014
Total Posts : 27
   Posted 12/9/2017 9:42 AM (GMT -7)   
They haven't told me if they do have a portal... sad 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.

Spring
Regular Member


Date Joined Jan 2017
Total Posts : 113
   Posted 12/9/2017 10:10 AM (GMT -7)   
When I am bad off I eat eggs, potatoes, rice cakes, vegan yougert, bananas. I know diet is very individualized, so those things may or may not work for you. What you are going through is not normal, and yes, your body is betraying you. I am a person that tries to always be in control, and when things get to where I can't control it, it can be quite unsettling emotionally. Do you have help/support for when you get home? When I went home after my first flare I couldn't even fix my own food I was so weak. It took me a month and a half to be able to walk through a store. Try to be patient with yourself, it's going to take time to come back from this.
36yr old mother of 3 Moderate Pancolitis 1/3/17. Hospitalized 1 week on Solumedrol, Delzicol. Apriso, pred, then switched to Balsazide Disodium 750 mg, and Uceris 9 mg 3 wks. Minor flare in August, in a more major flare since Oct 20. Acute pancreatitis from Balsalazide hosp. 2 days, starting Humira soon. Vegetarian whole life, Gluten free since 2008, dairy free

Hugo18
Regular Member


Date Joined Mar 2017
Total Posts : 56
   Posted 12/9/2017 1:42 PM (GMT -7)   
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.

straydog
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Date Joined Feb 2003
Total Posts : 15332
   Posted 12/9/2017 2:59 PM (GMT -7)   
Tx, when I was on Humira for my loading doses the nurse & I rolled the pens between our hands to warm the pens up somewhat. After that, with my drs blessing, I would set the pen out about 20 minutes before using it & still rolled it between my hands. I never got the courage up to inject my stomach, I injected on my thighs. I also pinched up a little skin too.

I do hope that it helps you.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Texas1992
Regular Member


Date Joined Jan 2014
Total Posts : 27
   Posted 12/9/2017 8:37 PM (GMT -7)   
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..

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 723
   Posted 12/9/2017 9:51 PM (GMT -7)   
Texas1992,

I am so sorry you are going thru this. I was so sick at one time. All I could eat was a half piece of beef jerky and 3 cheetos a day. Those were the only things that would stay down. Ensure came right back up. My spouse went to Wal-Mart to get the chocolate ensure thinking maybe that would work-they were out-and he ended up buying the Equate chocolate drink. It is now the 3rd thing that I can eat when I am really ill. FYI...even when I only ate the half piece of jerky and 3 Cheetos...I still went to the bathroom 10 to 15 times a day.

I hope the humira kicks in and you feel better soon.

Hang in there!

Clo

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 11047
   Posted 12/10/2017 10:23 AM (GMT -7)   
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.
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

U.C. = Unimaginable Crapnado
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