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inspectorgadget
Regular Member


Date Joined Nov 2008
Total Posts : 35
   Posted 11/4/2008 8:34 PM (GMT -6)   
Hello all,

Been reading here for a few days since the start of my recent flare. Wow, I feel for you all. Can't say that my experience has been as bad as many of you. Like some here I remain convinced that my problem is body chemistry that can be corrected, although my conviction is waning some. I've never found my Dr. to be very forthcoming, nor confidence inspiring. I am hesitant to relate all of my food and supplement experimentation for not wanting to send anyone on a wild goose chase. Especially since I've never kept a diary to support my hypothesis on the things that seem to work for me. Gonna try to commit to the diary now.

My most recent flare started about a week ago after I quit my Asacol cold turkey after clear scope (3 weeks prior). I was told to continue my meds but I was optimistic that I was OK now. This flare was the worst I've had and may have been exacerbated by a flu bug at the same time as the frequency was far beyond any issue I've had in the past. The flare sent me and now my wife to the net where I've now recently discovered new and vexing information to complicate the puzzle for me, but also maybe some promising info too. Luckily, in a way, the flare didn't really affect my work at all. Even more lucky is somehow it has calmed down enough that I can work without too much fear of an embarassing moment (I think there is a pun in there). I have 2 to 3 hour appointments with new clients every day. Some give complete attention, some give little to none.

I think my symptoms started sometime in 2005. I consider many suspects including - HIGH stress, - Broad spectrum antibiotics from surgeries, - Wheat bread, - Starbucks or any combination of the above. My recent searching has revealed an accepted link between UC and Accutane which I took 20 years ago. I'm taking so many supplements now along with the Asacol I have no idea which are doing what. I am determined not to be on Asacol the rest of my life as it gives me excessively oily skin and acne, and who knows what else. I can control the acne with a strict regimen but it drives me nuts. Besides that and maybe some hair loss, that could be mom's genes, the Asacol seems to work. 2 3x a day.

Once I am down to 1 BM a day, never really solid but almost, I start to dream of not paying for the Asacol and not having the oily skin and the bleached pillow cases from treating the acne and I'll quit the Asacol. I will be great for 2-3 weeks and then BAM, a day of SEVERE headache and some fatigue. Then the mucous comes back, then some blood, then the worst part - frequency and urgency. Like I said, this time has been the worst. I didn't have appointments on the worst 2 days otherwise that would have been the first real effect it had on my business. I would have had to cancel. I did have 2 appointments on one day but made it through with clients that didn't hover. Nothing like a practical test.

Honestly, besides severely spicy food I can't put my finger on any real diet triggers. I have some suspects, ironically sunflower seeds it one, but I eat them like a baseball player, salted and in the shell (I don't eat the shells...much). For 2 years my doctor would say my diet made NO DIFF, NONE. Not a trigger , nothing. Finally, recently, he said "you should take vitamins". I guess I looked like sh_t that day. My net searching has led me from white bread to tortillias to oatmeal, to pineapples and now POND SCUM.

I searched the forum couldn't find any reference here to SPIRULINA. I can only guess some combination of the 3 supplements I just added calmed this flare up faster than the others before. I just added Gingseng, Spirulina, and odorless garlic to my regular, Vit A and D, Omega 3, Zinc, Vit E, Folic Acid, Vit C, Bromelain and Culturelle, not to mention I went back on the Asacol. In less than a week I went from not being able to work to being able to. The last flare up a year ago never prevented me from working but took months to get under control.

Which is working? I wish I knew, but I love spinach and sunflower seeds so I'm willing to try that too. I think it may be the Spirulina??

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5968
   Posted 11/4/2008 10:38 PM (GMT -6)   
I never heard of Spirulina.  Crabcakes triggered two of my flares.  I am convinced of that.  My GI doctor said diet has nothing to do with flares, but I tend to differ.  Diet alone may not trigger a flare.  Stress plays a big part in this disease too.  I am off the prednisone once more...yippeeee!!  Now to see if I can remain in remission for longer than two weeks.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Still flaring.   Afraid that I am pred dependant.  Back on Pred 40 mgm for five days, then taper.  Other meds...Colazal, 6MP, Nexium, Cort enemas, Canasa suppository, Benicar, Toprol xl, water pill.
Calcium, Probiotic, Flaxseed oil capsule, multivitamin with Iron
Also have osteoporosis and high blood pressure
Remicade NOT an option. Not a candidate for surgery yet..says surgeon.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30677
   Posted 11/5/2008 12:31 AM (GMT -6)   
welcome to the forum!

It wasn't the food that encouraged your next flare....it was because you went completely off the Asacol cold turkey.

I must add that you should be on rectal meds as well.

Is your UC throughout your colon or limited?

quincy
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 11/5/2008 1:35 AM (GMT -6)   
I started taking Asacol when I was first dxed in '06. Never had a flare until I stopped taking it, and I tapered down. There are only a few meds that I'd stop cold turkey and not expect some negative effect, and Asacol is not in that category.

I don't believe diet triggers a flare, but it certainly contributes to how I'm feeling physically. Certain foods make me gassy, certain foods make me go to the bathroom alot, but no food itself makes me bleed or gives me near-constant diarrhea for weeks on end.

Hope you get your flare under control soon. If you end up on the Asacol again, you might want to consider taking it awhile after you are feeling better, and then do a slow taper off. Some people are able to maintain remission without meds.
Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06
Meds & supplements: Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Colocort, Prednisone, flaxseed oil, L-glutamine.


inspectorgadget
Regular Member


Date Joined Nov 2008
Total Posts : 35
   Posted 11/5/2008 4:50 AM (GMT -6)   
I've had 2 scopes. The first Nov 2006 showed limited left side UC - 4cm is what I remember. I had been well enough for some time and my recent scope in Oct showed NO Ulceration at all. So I gave it a shot.

beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 11/5/2008 5:35 AM (GMT -6)   
I wonder if your flare started because you stopped the Asacol, or if it started because you stopped the Asacol suddenly? Even with my taper, when I finally stopped the Asacol, I felt fine about a week, and then one day the flare started. I'd never flared before, so it was a new, and very unpleasant experience for me.
Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06
Meds & supplements: Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Colocort, Prednisone, flaxseed oil, L-glutamine.


inspectorgadget
Regular Member


Date Joined Nov 2008
Total Posts : 35
   Posted 11/5/2008 7:27 AM (GMT -6)   
Like I said my conviction is waning. I am sure this flare is since I stopped the drug completely. I can almost predict the day it will start the next time I try to stop the med. I believe my cause is the result of some long term item I've either had too much of or not enough of. It may even be fiberglass insulation I've ingested from climbing though thousands of attics (didn't always wear a mask). I don't know yet but I believe its a body chemistry issue. I emboldened to give up the med when my scope was free of ANY ulceration. Next time I'll cut back first. The Doc had said if my scope was clear then he'd consider cutting my dose, but didn't after the test. Not scheduled to see him again until 12/23. I'll take the ASA since I need to enjoy my holidays and playing in the snow.

Michigoose
Regular Member


Date Joined Oct 2008
Total Posts : 64
   Posted 11/5/2008 9:02 PM (GMT -6)   
Inpector--
 
Quincy and Beartooth are spot on--The last two flares I had came after I stopped my Asacol--just about 2 months after I quit in both cases.  It'll do it every time--believe me, I learned the hard way! shakehead
 
Michigoose
Moderate to severe left-sided UC, Dx 1991
Lialda 2 per day
Prednisone for flares. SCD recipe yogurt daily for probiotics.
Fish oil caps and Multivitamin and Bee Pollen
Prima. Reuteri. L Glutamine, and iron supplement

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