Posted 2/26/2008 11:23 AM (GMT -7)
What a wonderful piece! You have a wonderful ability to put into words exactly what we are going through, which is not easy! I have sent the link to my friends and family. Congrats!
Maureen4RU
lived with UC for 7 years
Colozal (12 pills a day)
Entocort (3 pills a day)

Posted 2/26/2008 11:37 AM (GMT -7)
what a wonderful piece, thanks so much for writing it. i am having a rough day with my colitis and it helped remind me that hope is the most important thing.
-currently having a flare
-prednisone , rowasa enema, Lialda (4 pills 1 time a day), canasa, probiotic, multivitamin, calcium with vitamin d, iron

Posted 2/26/2008 1:15 PM (GMT -7)
Loren...thank you for sharing! Personal experience is a good way to help others (to hopefully) start to understand living with UC and chronic illness.

Heather
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  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 !!!

Posted 2/26/2008 1:36 PM (GMT -7)
Loren,

Your focus on not having control over one's body and the general unknown about this disease I think is what so many of us can't explain to those around us who don't have UC. We can take the pills, improve our diet and change our lifestyle, but the immense frustration in not being able to totally control one's body is what the world needs to understand. Well done!

meredith
aquafly79
 
Diagnosed with UC in 2004
Had flares all through pregnancy last year, and current flare on and off for about 6 months, Imuran helped me get off Pred. and get into remission!!
Currently on Lialda, Imuran 75mg,
prenatal vitamin(taking for folic acid and other nutrients), calcium, and Bifidus Balance FOS probiotics.
Mesalamine enemas as needed...
 

Posted 2/26/2008 1:47 PM (GMT -7)
hey all. thanks for the kind words and so glad to hear that you feel I have represented us well. I do sincerely hope you guys will email it to other people, which you can do straight from the New York Times website. I feel strongly like this is a chance for us to get a bit more visibility for the disease. OLD HAT - I understand what you're saying that a celebrity needs to poop in their pants, but I couldn't get anyone to agree to that.... :) so, we have to just use this as a baby step in the long road of education.

anyway, having approval from you guys means a lot, so thanks again.
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day (was on 12 Asacol/day, but suddenly got sick from it)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Cortfoam in AM, Rowasa in PM (is working wonders for me thus far)
Various vitamins, bit of fish oil, a probiotic.
Getting married October, 2008!!!!

Posted 2/26/2008 3:17 PM (GMT -7)
Its good to see some publicity on this disease. I've run into far too many people who were unaware of its effect on people and their lives. Thanks Loren!
Diagnosed Fall of 2004
(Scheduled for Stage 1 of IPAA in late February:Complete!)

Meds:
Prednisone (10mg taper)

Posted 2/26/2008 3:36 PM (GMT -7)
Your article was beautifully written, it even made me cry a little. I really felt the words you wrote and cannot agree with them more. I am sending it to all of my friends and famiy and telling them this is what I've been trying to tell them! I share your hope and your pain. This disease sucks but we will get through. My family tells me I have a great attitude about my disease but it is how you say...things will work out, just becuase they will.

Thank you for writing the article, you are expressing more thoughts than your own. And congrats on the publlication!!!
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, started at 60 mg 1/07, 15 mg pred, down to 10 mg 1/11/08...down to 10/5...
75mg Imuran starting 8/23/07---bumped to 100mg 10/8/07--bumped to 125 11/14/07...
Taken off of Imuran temporarily 1/11/08-back on 1/16/08 now at 150mg imuran
waiting to be scheduled for remicade.
Prontonix once daily for acid reflux, zofran twice daily for nausea, darvocet for pain
antispasmodics didn't work.

Posted 2/26/2008 3:37 PM (GMT -7)
I'd also like to thank Loren for her contribution. I find it to be a remarkable piece of work as most people on here have said.

As to the comment that it won't make a difference. Of course it does. If one single person gains from this article then it has made an infinite success. And by the looks of it many already have. As for needing a celebrity to have to "highlight" this disease, well firstly we seem to have one in Loren! and secondly I don't need a celebrity to highlight this conditon for me. Each one of us on this forum deals with UC in their own unique way. We live with this condition becasue we find a way to deal with it, ourselves. Not because we rely on the outside help of some "nominal" media name.

As for IBD being on the back-burner. No I don't think so. You know sometimes you have to just believe that the human being is of noble spirit and behind all the cynicsm of us in the West people do care. The case of UC will fall. It will be solved. Science will beat it. Not money.

We are the heros here. Everyone of us. Everytime we get out of the bed in the morning to face another hopeful day. We deal with this issue just as Loren has said. Never forget that no matter what UC throws at you.

So yes Loren I think your contribution will make an amazing difference to the general public.

D
400-800 mg Asacol a day
Iron supplment,Probioitcs
Balanced Diet (...ish!!), Reduced Stress
 
"There are only about a half dozen things that make 80% of the difference in any area of our lives."
 
 
 
 
 
 
 

Posted 2/26/2008 4:01 PM (GMT -7)
Great article, Loren. It made me get teary-eyed. Congrats are getting published in the Times. Are you a regular writer there or was this a freelance piece? Thanks for sharing.
24 years old
Diagnosed with UC March 2007; yet to go into remission
Asacol 4 tablets 3x/day
Rowasa (generic) - daily
Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin; Metamucil; Viactiv (Calcium and Vit. D)

Posted 2/26/2008 6:05 PM (GMT -7)
Loren,

Thank you for sharing your Times piece with us. I immediately copied the link and emailed it to all of my family and close friends. You're piece is spot on and very eloquently written. (incidentally, I didn't realize that you were engaged, congratulations!) Thanks for a great read!
Erica, 31
Pancolitis, diagnosed July 2006, at age 29
Imuran, Asacol, Rowasa*(new!)
Experimenting with diet, live culture yogurt and probiotics

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