PLEASE HELLP Advice on scoping

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buckeyeinchicago
Regular Member


Date Joined Feb 2009
Total Posts : 40
   Posted 2/21/2009 6:33 PM (GMT -6)   
I have been in a bad flare for about 4 weeks now.  First we tried upping my asacol to 4 pills 4 times a day, then we started and ended cortifoam because it didn't work.  Then I went to 100 mg of 6mg and still didn't work so I turned to prednisone at 60 mg and have been on for almost a week.  I still am having BIG issues and talked with my doctor on Friday.  I had a colonoscopy five months ago when I was in remission just to check and make sure everything was okay.  It came back completely clear.  Now in the midst of the flare the doctor said that the next step would be to scope me on Monday to see if there's anything else going on up there.  He also said that there would be nothing he could change about my medicine though since I'm already on the highest doses.  I feel like it's almost pointless to get a scope knowing that it's probably just a bad flare and he'll say to stay with what I'm doing on the meds and hope that it helps.  He wasn't real descriptive of what else he could find.  I need to decide tonight if I want the scope so that I can prep tomorrow.  Would you go through with it?  Please respond with any/all advice.
Diagnosed when 13 and am now 25. Currently taking 100mg of 6mp, 60 mg of prednisone and 12 pills of asacol a day


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 2/21/2009 6:43 PM (GMT -6)   
When I was flaring that badly my doc never liked to give me a full scope because it could sometimes exacerbate the symptoms. He would just do a flex sig on me - which I prepped for right in his office using 1 or 2 fleet enemas. Out of curiosity - how long did you give the 6mp to work before you decided it wouldn't cut it? That drug usually takes a few months to kick in. Did you try using enemas twice a day - 1 Rowasa/Solafolk and 1 cortifoam?
Mamas Boys
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!


buckeyeinchicago
Regular Member


Date Joined Feb 2009
Total Posts : 40
   Posted 2/21/2009 6:53 PM (GMT -6)   
I've been on the 6mp for four years but just upped it 2 years ago. I am still on it in hopes that it helps with remission but my doc said it would take awhile. I tried the enemas before and have never had results.
Diagnosed when 13 and am now 25. Currently taking 100mg of 6mp, 60 mg of prednisone and 12 pills of asacol a day.  I tried cortifoam for this flare and it didn't work.  In the past I've tried rowasa, enemas, pentasa, colazal, sulfasalizine.  I was in a four year remission until the end of January.


Christine1946
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Date Joined Aug 2008
Total Posts : 5965
   Posted 2/21/2009 7:35 PM (GMT -6)   
     My GI doctor tried to scope me while I was flaring a few years back and only was able to go up 20 cm.  All that crappy prep for naught!  From then on, he wouldn't dare attempt a scope on me while I was in a flare.  He said he was afraid of perferating the ulcers.  Make sense to me.
     I was hospitalized last May for UC and my fifth day I was scoped but the GI doctor used a pediatric scope on me.  Very narrow.
     So in answer to your question.  NO...I wouldn't go through a colonoscopy while flaring.  Explain to your doctor that you would rather wait till you are in remission.  Furthermore...you just had a scope five months ago!  My scope was last May and my doctor isn't pushing for me to have another one yet.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/21/2009 7:49 PM (GMT -6)   

Guess I think a little different - maybe depending on the severity of the flare.  Seems like you have to find out something.  Maybe a ct scan would be better.  I had three scopes last year and this - all flaring - bleeding and inflammation - no problems - two colonoscopies and a sigmoid!  I just relied on my doctor to do what was best for me - he feels he cannot treat until he "sees" what is going on!

Good luck!

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only few cm. left to heal in rectum - tried Proctofoam for weeks - no luck.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Tried hydrocortisone for two weeks with no change.
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 
 
 
 
 
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 2/21/2009 11:35 PM (GMT -6)   
buckeyeinchicago how long did you try cortifoam for? The worse the inflammation the longer it can take to kick in...I've taken for as long as a year before tappering off of it at one of my worst proctitis flares...it's the only rectal med that does the job for me and the longer I wait to use it (which I've learned a valuble lesson from that and don't wait anymore) the longer it takes to work because generally the worse the inflammation is the longer you wait.

:)


My bum is broken....there's a big crack down the middle of it! LOL :)


buckeyeinchicago
Regular Member


Date Joined Feb 2009
Total Posts : 40
   Posted 2/22/2009 10:18 AM (GMT -6)   
I only did it for a week two times a day. It was making my stomach hurt a lot after I put it in so my doctor pulled me off, possibly too early. This morning I only went two times and both times weren't as horrible so I'm goign to put off the scope another week and see what happens. If I really am turning a corner like I think I might be then hopefully I can avoid the scope. Thanks so much!
Diagnosed when 13 and am now 25. Currently taking 100mg of 6mp, 60 mg of prednisone and 12 pills of asacol a day.  I tried cortifoam for this flare and it didn't work.  In the past I've tried rowasa, enemas, pentasa, colazal, sulfasalizine.  I was in a four year remission until the end of January.


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 2/22/2009 11:44 AM (GMT -6)   
I was also going to suggest a flex sig, if you just want to confirm a flare. Colonoscopies while flaring can just make things worse...but

What are the big issues you are having? Does it seem completely different such that the doc has some concerns it is not "just" UC? I guess I always ask, what would be done differently if a scope show, yep, your're flaring!
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion), trying Curamin. Doing OK, but still have some bad days. 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 2/22/2009 1:58 PM (GMT -6)   
buckey, it giving you a painful stomach is a weird symptom from cortifoam, one I've never heard, although I've olnly ever used the cortifoam once/day just before bedtime...if you need rectal meds, I'd try it again (once/day @ bedtime), maybe it was just a coincidence that your tummy hurt when you tried it before.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/22/2009 4:19 PM (GMT -6)   

Proctofoam, hydrocortisone enema and Rowasa made my stomach and colon hurt a lot for about 20 minutes.  I just relaxed (sometimes hard to do) until it subsided and then went to sleep.  The cramping was bad sometimes.  None of those worked for me either - maybe a little but mostly made my rectum feel worse and more blood.  The only thing that did not hurt after, etc. was the Canasa suppositories but they did not stop the bleeding either.

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008
Tried all mesalamines and enemas, Canasa, etc.  Colonoscopy 10/28 showed only few cm. left to heal -hydrocortisone enemas 12 days - much worse.
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 Feb. 21 - down to 20 mg. - no blood, no pain, no bad side effects so far.  Plan on adding 6MP (or?) at lowest possible prednisone dose.
Probiotic Align, Prilosec for GERD
 
 
 


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 2/22/2009 4:36 PM (GMT -6)   
The only ones that used to do that to me were the Colocort enemas (Cortenemas).  I couldn't tolerate them.  Suprisingly cortifoam was fine.

Mamas Boys
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!

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