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My amazing father

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renaecihacek

I have joined the forum for help and inside information from actual people with Crohn's. My father was misdiagnosed years ago and now has severe Crohn's. He is living in Arizona and I am in Nebraska. For the last couple of months, he has been in a living hell. He went from a solid 185lb healthy male, down to a 125lb bag of bones. He has been on numerous medications, then ended up with c diff. After the first round of c diff, the doctor prescribed Humira. Right before the first set of injections, he tested positive for c diff again. The doctor still wanted him to take the injections, while taking meds to get rid of the c diff. He had his second set of injections the other day and now he is doing worse. He is having accidents daily, horrible abdominal pain, severe depression and wants it all to end. Does anyone know what he can do next? He has an appt with the doctor tomorrow morning, but I am afraid that they will not do anything for him. The doctors in Arizona are terrible!!!! My poor father cannot leave the house. He has not left the house in months. What can I do?
 
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lenny

Ask a nurse for a recommendation? My oldest daughter is an RN and she knows who the good docs are. But, only in San Antonio. She always tells me that the difference in outcome is HUGE.

It sounds to me like your father needs to be put on Prednisone?
 
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renaecihacek

They have an appt with the doctor tomorrow, so my mother will be asking about it. She wants to have him admitted to the hospital, but I am wondering if it would do any good?
 
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worriedboy

Did he have a scope done lately ?
I would expect that his doctor will run some tests including a colonoscopy.

Since the immunosuppressants of different kinds are not helping (yet) - I wonder if it's not the cdiff which is giving him this hard times.

Maybe the strategy should be to get rid of the cdiff first and foremost ?
 
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renaecihacek

He went to the 2nd doctor and was told that he cannot do anything else for him. He told him to go to the Mayo Clinic ER. He went to the Mayo clinic and they told him that they were having a dispute with his insurance, so he would have to be treated at another hospital. They went to a different ER and they took blood work and a cat scan. Blood work came back good and the cat scan showed inflammation, so they released him. They hooked him up to an iv, but he wasn't dehydrated. So now I am wondering what he should do. He is still in extreme pain and cannot eat. He is very weak and is severely depressed. He is dropping off his stool sample this morning to test for c diff and they are calling to schedule another colonoscopy.
 
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renaecihacek

They gave him pain meds. His c diff test finally came back negative. He has another round of Humira tomorrow. They said that the inflammation has to decrease before they can do a colonoscopy. He is still cramping and now has to wear Depends at all times. I pray that the Humira starts working!!! Thank you so much for checking in. I truly appreciate it!
 
my little penguin

my little penguin

Moderator
Staff member
Humira takes a while
Think months not days
Can his GI admit him for Iv steriods ?
Those work quicker than oral steriods.
EEN is formula similar to ensure or boost
Easier on the gut helps with inflammation and works as good as Pred
It's used in kids instead of pred -so no food just formula for 6-8 weeks.

Some need prescription formula -peptamen or peptide
DS drinks peptamen jr -it tastes foul but helps his gut .

Good luck
 
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