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it's a catch 22. we just can't win for losing.
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Ulcerative Colitis
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Chris'sColon
Regular Member
Joined : Jun 2008
Posts : 237
Posted 10/3/2010 1:15 PM (GMT 0)
so chris has been doing well (as far as the bottom end goes) on the prednisone, but he got a nasty ant bite on his knee that his body was unable to fight because of all the immunosuppressants, so we got him some strong antibiotics because his pediatrician thought it looked like a staff infection. well of course the antibiotics sent him back into a nasty flare and we're on his last day of pred and the GI doesn't want to continue him on it. a date for surgery hasn't been set yet, but it will be soon and the surgeon wants his colon in the best shape possible at that time. i don't want him on the pred either (mainly because it makes him a little monster, and the nasty physical effects it has) but i don't want him flaring either. so what to do? should i beg the GI for more pred or suffer through? should i go around the GI and ask the surgeon since he needs the colon healthy for removal? chris has never made it out of a flare on his own without prednisone.
suebear
Veteran Member
Joined : Feb 2006
Posts : 5698
Posted 10/3/2010 1:47 PM (GMT 0)
I think most of us had surgery while on pred. Yes, it's not optimal but when you're sick, you're sick and if you aren't heading towards remission why keep adding more pills? Have you talked with the surgeon about
a 3-step surgery? This is usually done when the patient is ill. Three steps allows for a good bit of recovery, and pred withdrawl, without compromising the end result- a healthy new plumbing.
Sue
Scrap Girl
Veteran Member
Joined : Feb 2007
Posts : 653
Posted 10/3/2010 1:49 PM (GMT 0)
I was on 20 mg when I went into surgery and it was no big deal. I think they would rather have the patient healthy because they will taper the prednisone quickly after surgery.
Chris'sColon
Regular Member
Joined : Jun 2008
Posts : 237
Posted 10/3/2010 2:01 PM (GMT 0)
so ya'll vote for more pred? that's what i'm thinking. but with today being the last day we have on it, he'll be off tomorrow. will we have to start over at 20mg to knock the flare back out or should we do something more like 10mg just to maintain until surgery? obviously his DR.s will decide how much to give him, but i'm just wondering what ya'll think. we still have a few more days on the antibiotics.
sue, the surgeon plans to do the surgery in one step without a j-pouch. he says that with chris being so young and growing and otherwise healthy he can hook the small intestine right up to the anus, stretching it a little in the process and as he grows it'll adapt on it's own. said he's done it this way hundreds of times and only does j-pouch on older children who aren't still growing like small children do.
WIMOMOFTHREE
Veteran Member
Joined : Apr 2009
Posts : 654
Posted 10/3/2010 2:09 PM (GMT 0)
I'm sorry. I hope he feels better. I would talk to his doc. if he is no help I would talk to the surgeon. I my opinion he would be the one to ask because he is going the surgery route. Don't worry about
offending anyone. As my husband says they will get over it and if they don't to bad. It is your kid and you do what is right in your mind. How scary an ant bite can do that. Best of luck
Chris'sColon
Regular Member
Joined : Jun 2008
Posts : 237
Posted 10/3/2010 2:12 PM (GMT 0)
oh i am not afraid to hurt anyone's feelings over my son's health. and yeah if a little ant bite could do this just imagine what a spider would do.
C_G_K
Veteran Member
Joined : Dec 2006
Posts : 1421
Posted 10/3/2010 10:19 PM (GMT 0)
CC,
The inability of many of us U.C. sufferers to take antibiotics without flaring is a major problem and leads to situations like the one your son is facing.
After suffering with a kidney stone this weekend, I was so relieved to find out that I didn't get a bladder infection from the stone, which I thought for sure I had.
zamba
Regular Member
Joined : Feb 2010
Posts : 90
Posted 10/3/2010 10:31 PM (GMT 0)
Hope chris gets better soon.... i would suggest talking with 2-3 different GIs/surgeons....just be after them til they answer each and every concern you have. Did u read the post 'Hailey's letter' some time back... i think last year- she is a little girl with UC who was cured when she took medicine for pneumonia..... here is the link......
https://www.healingwell.com/community/default.aspx?m=1689855&f=38&p=1
i wish Chris finds a cure & does not have to go for surgery.
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