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Brother in Hospital for 2 weeks and getting worse

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Ulcerative Colitis
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Posted 9/27/2019 11:44 AM (GMT -5)
I have had UC since I was 19 and have been through some pretty significant flares.
My brother was just diagnosed after months of bleeding and pain. He has been in the hospital for 2 full weeks. Prednisone,Asacol, Enemas and as of yesterday Immuran.
He is in tremendous pain. and hasnt talked or eaten anything in 2 weeks.
He has had scans and Xrays. he is getting another scan at this moment.

Has anyone ever been in the hospital this long without any relief? They mentioned they do not want to do surgery at this point.

Thank you. Any info is welcome.
Posted 9/27/2019 12:41 PM (GMT -5)
He hasn't talked in 2 weeks? I would think they'd start him on biologics before Imuran since they work faster. I hope he finds relief soon. I assume they did a colonoscopy to diagnose him? Have they ruled out infections like c diff.? I hope they are giving him pain meds. Those should at least help some but I know sometimes the pain is so bad, they barely touch it. I've never been in the hospital longer than about 5 days.
Posted 9/27/2019 12:55 PM (GMT -5)
I am so sorry about your brother. Is his GI the same as your GI? If not can you get your GI involved since you have been managing your UC (don't know how long). Getting a GI involved will be your best help since many hospitals are not as knowledgeable as a specialist.

Why is he not talking? Due to pain or depression? They should be able to treat his pain but it may take strong pressure to get him that relief since everyone is worried about addiction. In this case there is very good reason he needs pain relief. Speak for him if he cannot do it for himself and keep pushing, maybe they could do an IV instead of pills.
Posted 9/27/2019 3:01 PM (GMT -5)
Why did it take him so long to get diagnosed when you have the disease? It should have been blindingly obvious to even a primary care physician once the family history was known. Why did it take TWO MONTHS for him to get diagnosed? That wasted time is why he is so sick and there is just no reason for him to have had to wait so long for a diagnosis.

Is your brother in an ER or is he in a gastroenterology ward?

Who is treating him? Can you ask YOUR doctor for advice or a referral to a competent gastroenterologist?
Posted 9/27/2019 6:31 PM (GMT -5)
Does he have a fever? How high? How high is his CRP? How severe and extensive does his UC appear to be?

Sara is right - normally with a hospitalized UC patient, first check for infections (c.diff, CMV, others). IV steroids are started. If, after 3-5 days, there is not a good response to the steroids, then perhaps double check for infections. If that's all clear, then start a biologic (remicade) or cyclosporine.

Imuran will take way too long to kick in, if it does at all. And Asacol and mesalamine or steroid enemas aren't strong enough for treating UC that has a person in the hospital.

Post Edited (beave) : 9/27/2019 5:38:24 PM (GMT-6)

Posted 9/27/2019 6:35 PM (GMT -5)
They should also have him on blood thinners, as he is at a risk for blood clots.

And while narcotic pain meds might seem appropriate to treat his pain, they are a risk factor to make bad UC worse and are to be avoided in this situation.

This is all based on ACG recommendations for hospitalized UC patients that either came out this year or will soon be released.

Post Edited (beave) : 9/27/2019 5:40:26 PM (GMT-6)

Posted 9/27/2019 9:09 PM (GMT -5)
I was in the hospital for about 3 weeks with the first diagnosis. A younger male, it's tough to be stuck in bed and in pain bleeding out your rear end. I started remicade and it somewhat worked, to the point I could be released. He should really get on a biologic sooner rather than later imo.
Posted 9/28/2019 12:55 AM (GMT -5)
It's a disturbing scenario .... to add to the other advice, he should be on TPN if he is unable to eat.
Posted 9/28/2019 6:37 AM (GMT -5)
Horrible situation. When I was diagnosed 10 years ago I got incredibly unwell and was hospitalised for 2 weeks. Nothing was getting me better until they put me on the Cyclosporine, which finally turned me around. Was in remission for 5 years. After that, starting experience 1 or 2 flares a year, but nothing like the 1st flare. Unfortunately now I’m going through another horrible flare again that Pred doesn’t seem to shifting it like normally. Probably going hospital Monday to start the IV steroid treatment, so fed up. I feel for your brother as I know the feeling as a young guy.
Posted 9/28/2019 12:26 PM (GMT -5)
I am surprised he's not in IV steroids. See if you can get a GI who treats IBD to see him ... perhaps your own doc? If he's still getting worse after being in the hospital for so long he needs a different treatment plan and maybe a different hospital. Where are you located? Can he more moved to another hospital that could better treat him?

I agree with the other than Imuran will take too long ... it normally takes 2-3 months for it to start working. Your brother needs better treatment now. Does he live close enough to you that you could be his advocate? I hope something works for him soon!
Posted 9/28/2019 1:11 PM (GMT -5)
I hope he is better now!
Usually prednisone works in couple weeks for me, maybe he is at a low dose of prednisone!
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