very frustrated!

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kshoe1999
New Member


Date Joined Mar 2007
Total Posts : 14
   Posted 7/17/2008 6:25 PM (GMT -6)   
I'm just at my wits end here. I was doing great and was finally in remission for the first time in over a year. Then in March, i came down with a nasty salmonella infection which totally knocked me into a flare. I was still having problems after finishing the antibiotic course, and my gi wanted me to go on remicade. Well i really didn't want to go on remicade, so i talked him into doing the thiopurine metabolite test thru prometheus to see if my level was within the therapeutic range. I agreed that if it was within range, I would go on remicade. Well, I was way under the range where i should be, so he upped my dose of imuran from 150 to 175. But when i last saw him, he told me that he didn't feel comfortable upping the dose any higher than that, eventhough i really want him to up it to 200, because i'm still having symptoms.
We tried entocort, but when i started to taper off, i immediately flared again. Does anyone know of any good probiotics to try or alternative therapies before i have to get on the remicade bandwagon? Oh and when i retested myself for salmonella last month, since my symptoms weren't improving, it grew out again. So, they put me on a different antibiotic for 14 days and basically scratched their heads, saying they didn't understand why i still had it. So, this has definitely been a crappy couple of months, literally and figuratively. I think I need a body transplant.
Kelli/27y.o.
Diagnosed with ulcerative proctitis spring 2001 (Age 20). Diagnosed with pancolitis Oct. 2003. Now Left-sided colitis as of March 2006.

Current Medications:
175mg Azathioprine
4000mg Sulfasalazine
1,000mg Canasa nightly
Align-probiotic


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 7/17/2008 8:23 PM (GMT -6)   
I'm so sorry that you're having a rough time. Uc is definately not an easy disease for sure. We all respond differently to different probiotics. I had a hard time trying to find the one that works for me, but after I found it, I was glad I stuck to experimenting. Even though I still flare while taking it, it makes my gut feel more "comfortable". I take Pro-Bio from Enzymedica. Then some natural products you can try is fish oil capsules or Bee Propolis (do not take if allergic to bees though). Have you altered your diet at all? Are you still on Canasa? If so, you might want to look into an enema instead such as Rowasa or even a steroid enema to help boost you in the right direction.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs), Hydrocortisone E's, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Allegra
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections~bulging and herniated discs C5,C6&C7~2nd epidural injection 8/14
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kshoe1999
New Member


Date Joined Mar 2007
Total Posts : 14
   Posted 7/17/2008 8:36 PM (GMT -6)   
I'll definitely try the fish oil or bee propolis. I figured i'd talk to my gi about vsl#3 on my next appointment. I was taken off the rowasa enema, because it started to cause chronic diarrhea and and I've tried the steroid enema many times, and unfortunately, like prednisone, it just isn't effective for me anymore. So, we've been trying the canasa. Thanks for the reply!
Kelli/27y.o.
Diagnosed with ulcerative proctitis spring 2001 (Age 20). Diagnosed with pancolitis Oct. 2003. Now Left-sided colitis as of March 2006.

Current Medications:
175mg Azathioprine
4000mg Sulfasalazine
1,000mg Canasa nightly
Align-probiotic


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 7/21/2008 6:17 AM (GMT -6)   
Another good probiotic is Primadophilus Reuteri. I've had much better results from it than any of the others I've tried. One or two capsules a day, and it's affordable.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.

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