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Crohn's Disease Forum » Support Forum » Mental Health Support » Haven't felt this sick since ER visit that dx'd Crohn's - Any Advice???


11-22-2011, 10:03 AM   #1
suschex
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Haven't felt this sick since ER visit that dx'd Crohn's - Any Advice???

Yesterday marked 6 weeks since my hospital visit/colonoscopy that dx'd Crohn's. I had felt a bit better in the last week or so but feel so badly today I wish I could go back in the hospital for help. Still on 40mg of Pred. Humira should arrive today but can't start until a nurse does the loading and not sure yet when that will be.

Is this how CD works...you feel better and then wham back to as bad as you felt before starting the Pred? Should I be worried/scared? Because I really sort of feel really worried and scared. Do I call the doctor or is this just part of it and there is nothing he can do anyway?

Please help...advice needed!!!
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Suzanne
Crohn's Disease - October 10, 2011

Current Meds
Prednisone
Entyvio

Past Meds
Humira
Lialda
6-MP
Remicade
Etc.......
11-22-2011, 09:43 PM   #2
Silvermoon
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Yes, quite a few people experience good days and bad days. The thing to learn/know is: is this a "normal" bad day for you? Did you maybe overdo it yesterday because you felt good so now you are knackered and can't get off the couch? How many "bad days" in a row do you have? After 25+ years with this disease, I am STILL learning how to answer these questions myself...lol.

It is going to take some time to learn what is "normal" or "abnormal" for you. The big signs to watch for are nausea/vomiting, bloody diarrhea, and extreme pain.

I am sorry I can't help you any more without further information on exactly what you are feeling... but if you are scared or worried, then it may be worth getting checked out by a doctor or nurse. There may not be anything they can do other than what is already going on, but being anxious/worried isn't going to help the symptoms (in some cases it can actually worsen them) - and until you learn what is "normal" for you, sometimes you need reassurance from someone who can actually set their eyes on you and see what is going on.

I am sorry this isn't very helpful, but hopefully tomorrow will bring a better day for you.

Squishy hugs.
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11-22-2011, 11:09 PM   #3
suschex
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Silvermoom - Thank you so much for the kind words. There really is just so much to learn.

I decided to call my doctor to see what he thought. He wasn't shocked that things were still not great. He said he knew the pred. wasn't doing all it needed to and what we needed was to start Humira ASAP. Well, it just so happened that my Humira loading doses were delivered today! He felt I was fine to inject on my own tonight so I just did!!! I am just so excited I could cry!

Just knowing that I am now on a new drug that may be able to get things into remission makes the "bad day" seem a little less "bad" right now.

Thank you so much!!!
Suzanne
11-23-2011, 01:37 AM   #4
Spooky1
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good luck with the humira, suschex. pred never resolved my crohns issue but helped the rhuematic joint flare ups.
11-29-2011, 05:23 AM   #5
zilla7777
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Hey there! Make sure you take it easy on your bad days because some days the pain might kind of snowball. Learned that the hard way a few days ago, and thought I should share the new found lesson, ahah. Hope the Humira is doing you some good

Last edited by zilla7777; 11-29-2011 at 05:49 AM.
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