New to the Forum

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??

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

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.

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.