PLEASE, how is your daughter?

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princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 1/18/2008 1:16 PM (GMT -7)   
Is she feeling any better?  I really hope so.
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with almost rectovaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Jan 29) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil as needed, Darvocet, Tylenol pm


jayce
Regular Member


Date Joined Nov 2007
Total Posts : 382
   Posted 1/18/2008 3:57 PM (GMT -7)   
hi princesscolon, thanks for asking- you too were diagnosed young-you're still young- and i hope you get to feel well enough to lead a young life. i notice that you did not take 6mp with evertything else you have tried is there a reason you didn't use that, it is really hard to know what to do.
she is not feeling well, can't get out of this flare for the last 2 weeks, going all night 5-10x that is killing me it's got to be exhausting. just had cat scan this morning and the 3 cups of drink are now killing her stomach. thanks for asking. i don't know what to do. she is insisting on starting the 6mp because she is desperate, i haven't told her the side effects, because i don' know what her choice would be. sorry to go on so long. i hope you get a remission soon!-thanks
Mom to 19 year old daughter diagnosed 11/07.
asacol 2 3x daily-discontinued
colazal 3 3x daily/switched to 4 4x daily
proctofoam 3x daily/1-2xdaily
mesalamine enema 1x daily
canasa suppostiories 3x daily /switched to court supp 1-2x daily
culturelle probiotic 1 daily/switched to danon activiea?
chewable vitamin
hydrocortisone enema at bed time


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 1/18/2008 5:35 PM (GMT -7)   
Dear PLEASE,
I had been on the Asacol a few years and then it started to not work as well for me, I was stupid and didn't keep up my doctors appointments and tried to cure myself (kicking myself right now!). So, by the time I went back to my GI, I was flaring so badly and my ulcer had started tunneling from my rectum to my vagina. My GI said there was not enough time to take 6mp or anything since they take a while to kick in, and I started the Remicade right away to close the fistula. That is why I never took 6mp.

I think one of the hard things about your daughter's case is she is on so many things at once, it must be hard to tell what's working, and if any of the meds mare making her worse possibly. (The Canasa made me worse). What meds does she take at bed time, do you think they are causing her night-time bms (maybe the hydrocortisone enema at bedtime?)? I am sorry she has to go through this. Every day is different for me, but I do have normal days where I can function like a normal person. I truly appreciate those days.
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with almost rectovaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Jan 29) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil as needed, Darvocet, Tylenol pm


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 1/18/2008 7:30 PM (GMT -7)   
PLEASE, I'm sorry she is still flaring so badly.

At 19, I think she needs to know the pros and cons of treatments offered to her, the potential side effects and benefits of the medications. One of the hardest things about this disease is that we feel that we've lost all control over our own bodies during a bad flare. Gaining knowledge and becoming active participants in our treatment planning helps to give us some of that feeling of control back and tends to make the situation more bearable for a lot of us. You of course know her best and have to make the decision, but I've found that even gradeschool age children benefit from feeling that they have some say in their treatment.

As far as the drug side effects, I've yet to have a reaction to a medication that was as bad as the full-blown flare I was in at the time I was diagnosed. That always helps me when I'm weighing decisions.

I hope she sees some improvement soon.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 

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