Pancolitis and 5ASA's - anyone take those w/Pancolitis?

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Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 7/21/2008 11:27 AM (GMT -6)   
I was on sulfasalazine then asacol and both greatly helped my Proctosigmoidits.  I went into a major flare after stopping them cold turkey, believing that is what caused my kidney disease.  I think now that perhaps the 5ASA's did not cause my kidney disease and that I had that before taking the 5ASA's. 
 
Just want to know if anyone w/pancolitis uses 5ASA's successfully?
 
I go away every year w/my girlfriends to the beach and have been doing that for the past 10 years and this year at the beach (this past weekend) while they were asking me about everything that was going on w/my health, I told them what I thought and a couple of them remember my ankles swelling up the summer prior to me being dx'd w/UC and taking the 5ASA's.  I kind of remember that too, I know the swelling was intermittent for a while, I know I went to the Dr's about it after my UC dx (just because I was dx'd right before my job I am at now and went to the Doc's about the swelling after I started my job). 
 
I am going to request a copy of my medical records to see if I ever brought it up in passing to any of my Doc's before and maybe they made notes?
 
What if my the MCD is not caused from me taking 5ASA's?  I don't want to end up getting surgery if it was all just a coincidence and also, i'd rather be on those than imuran and remicade.
 
Well I am going to get a 2nd opinion anyway, so I will bring this up, but if this was all just a coincidence I could just flip right the eff out.........but I kind of feel like I did the right thing by at least trying???
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 30mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 7/21/2008 11:59 AM (GMT -6)   
I have extensive colitis and I used to take Asacol and now take sulfasalazine.  The Asacol wasn't doing much but there's been a night-and-day difference since I switched meds.

daniella510
Regular Member


Date Joined Apr 2008
Total Posts : 48
   Posted 7/21/2008 12:00 PM (GMT -6)   

Hi Beth,

Sorry to hear that the 5ASAs could have potentially given you such a bad reaction!  I hope that it is not the cause for you.  I figured maybe I could at least go on record for you here that I do have pancolitis and I have been on Asacol for pretty much the entire run.  (I had a brief try with Sulfasalazine but was switched quickly due to sulfa allergy.)

Hope it helps you at the docs!  And I do agree that you did the right thing by at least trying to see if it was the 5ASAs that were giving you problems.  That is one of the most frustrating and exhausting things about this disease - playing guinea pig with yourself over meds and foods! 

Best of luck :-)
__________________________
Danielle
26/F
Dx: Pan colitis for 11 years
Meds: Asacol (400mg x12 daily)
         6mp (50mg from Aug06 to Dec07)
         Multivitamin
         Fish Oil
         Culturelle x2 daily


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 7/21/2008 12:36 PM (GMT -6)   
I was dx'd right from the start with pancolitis. Colazal did nothing for me. Asacol worked very well for a couple of years.
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  Remission?!?!?
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Remicade: 1st infusion 06/17/08:  Next (3rd) infusion 08/12/08
Last Prednisone dose:  7/15/08
 
Co-Moderator UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 7/21/2008 12:42 PM (GMT -6)   
thanks everyone for your responses, I know we are all different.

It is hope that keeps me going = )
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 30mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


Pooie1981
Regular Member


Date Joined Mar 2008
Total Posts : 274
   Posted 7/21/2008 1:30 PM (GMT -6)   
Well, I have had pancolitis since 2004 and have been taking Asacol since then as well. I only had the one major flare in 2004 prior to being diagnosed then was put on Asacol. The last 2 years I was taking my Asacol only off and on because I was feeling ok. I was certainly not taking it as prescribed. Then I ended up in a major flare (my first since being diagnosed) this passed March. I was switched to Sulfa but because of bad headaches had to stop taking it.. also tried Pred and Mesasal <spelling>. Back on my Asacol now and feeling well again. In my opinion.. my flare was from not taking my Asacol properly and my poor diet and lack of sleep.

Good luck with everything, hope you feel better soon and get things sorted out !!!
Jenn 26/female
Ulcerative PANCOLITIS diagnosed 2004
Asacol 3 pills once/day
Daily Vitamin for Women and Folic Acid
Flare March-June 2008.. pretty much in remission again July


burnabygirl
Regular Member


Date Joined Jun 2008
Total Posts : 205
   Posted 7/21/2008 6:46 PM (GMT -6)   
I have been using Salofalk (5ASA) enema since I was dx with UC in July 2006. At that time only my rectum was inflammed. The enema helped me to go into remission after 3 months and I tapered off with it slowly to 1 in 5 days. Then I had a flare in November 2007 and was prescribed Salofalk tablets as well. But my UC has become more serious and I was put on Prednisone after 2 ER visits for diarrhea and dehydration in February 2008, meaning that the Salofalk tablets were not strong enough.
Colonoscopy in April confirmed that I have pancolitis. After tapering off completely from Prednisone (after 3 months), I am now taking Salofalk tablets and Azathioprine. I also use Salofalk enema every night.
I feel much better now, going 3-4 times a day with formed stools. I think my current medications and supplements all play a part.
Good luck to you and I wish you'd feel better soon.
UC since July 2006. Medications: Salofalk enema nightly.
Remission from Nov 2006 to Oct 2007. Then a bad cold and a bad flare till the present.
Pancolitis diagnosed in April 2008. Current medications: Salofalk enema, Salofalk tablets 1000mg x 3/day, Azathioprine 50 mg. Warfarin for my Deep Vein Thrombosis which resulted from diarrheas and dehydration in Feb 2008.
Supplements: Probiotics, Calcium with Vitamin D, Vitamin B Complex, Vitamin C and psyllium capsule


AlabamaBabs
Regular Member


Date Joined Jul 2007
Total Posts : 172
   Posted 7/21/2008 7:23 PM (GMT -6)   
Beth,
I was diagnosed with pancolitis and started Lialda and am still on it and doing very well. A flex sigmoidoscopy showed that my colon had healed within a years' time since diagnosis. I am still on the Lialda for maintenance and also use cortenemas and canasa when my bottom is hurting and a flare is starting to 'rear' it's ugly head.

I think getting a hold of your med records and researching this is a great thing to do! Keep us posted!! What meds would exacerbate the kidney conditions for you?
AlabamaBabs
Pancolitis diagnosed 5/07 
4 Lialda/day since 8/01/07
Canasa suppositories 1000mg, as needed
Cortenemas, as needed
 

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