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Is this a normal flair?

upsetmom

upsetmom

Location
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My daughter recently changed fron remicade to humira about a month ago. She's had diarrhea for about 2 months but was able to manage it with lomitil. The last week or so the tablets started working less and less. She started to get very weak and tired, l tried to get in touch with her GI but no one got back to me for days so on Sunday l took her to the ER. She was very dehydrated. Her team came to see her and decided to admit her to see what was going on. As she had done work placement at the hospital and was in contact with gatro patients they thought she might have caught something. Her FC was very raised but we're still waiting to see if she has an infection. When she was admitted she was on total bowel rest but yesterday they decided she can have fluids. Her diarrhea has increased to every 10 mins. I'm wondering it it normal to be going toilet so often? The plan is if no infection, she'll be put on steroids and discharged today. Im getting worried at the thought of her coming home like this.
 
Cat-a-Tonic

Cat-a-Tonic

Super Moderator
For me, and I think for a lot of us, every flare is different, so there's not really a such thing as a "normal" flare. I think, though, that you should listen to your gut (no pun intended). If it seems like she shouldn't be discharged, then tell her doctors that and let them know about the diarrhea coming back with such a vengeance if you haven't already told them that. If her FC is very raised then presumably they could do other tests to find out why - if it's not an infection, can they do a colonoscopy while she's admitted? Or MRE or some other test to see what's going on? I agree with you that ruling out an infection shouldn't automatically mean she should be discharged from the hospital. She's still ill and suffering and they need to figure out why. Do advocate for that. Good luck and please keep us posted on what happens! And I hope your daughter can get some relief soon.
 
Catherine

Catherine

Moderator
FC being raised in normally due to a flare in a Crohn patient but infection should be rule out.

Due the current situation with flu Australia I am not sure I would want her in hospital if she can manage at home.
 
upsetmom

upsetmom

Location
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The drs came past this morning and said she's not coming home whether this is a flair or infection. I think the nurses had already documented how often she was going toilet. If no infection she'll be getting IV steroids. They said this was an unusual case as when the FC is raised there are usually white cells but there are none in my daughters. Her FC is so raised its not even on their chart. I should know more later this afternoon if the results are back.
 
upsetmom

upsetmom

Location
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No infection. The DR doesn't want to start steroids yet as she thinks something else might be going on. She said it could be something on top of her crohns like norovirus so before starting steroids she wants to do scopes tomorrow if she can squeeze her in her schedule.
 
upsetmom

upsetmom

Location
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Scopes showed the whole bowel is moderately inflammed. Dr wants to rule out CMV before any treatment is started, which can take a few days for biopsies to return. She's still on fluids which has slowed down the diarrhea.
 
upsetmom

upsetmom

Location
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So it is a crohn's flair. My daughter has never had it this bad before. They've got her on steroids now hopefully things settle down fast.
 
Maya142

Maya142

Moderator
Staff member
Sending hugs - so glad she is on steroids. Is she on Humira every other week? Giving it to her weekly might help.

We also found adding Methotrexate helped.

Humira can take a while to kick in - it took 6 months for my daughter, after we had made the injection weekly and added MTX. Then it worked like magic.

Hope she starts feeling better SOON!
 
upsetmom

upsetmom

Location
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Maya, she is on it every two weeks. They did a blood test to check her levels to see if they need to increase the dose.
 
upsetmom

upsetmom

Location
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I thought I'd give an update. My daughter is still on steroids. Everytime she reduces to 15mg she gets sick so she goes back up to 20. She has low bone density so I'm worried about her being on steroids for so long.

We're waiting for approval to start stelara, apparently this is our last option.
 
my little penguin

my little penguin

Moderator
Staff member
Ds started Stelara in August
Be prepared it does take every bit of 6 months to be fully effective

He is starting Stelara every 4 weeks
This week mainly due to arthritis
 
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