article on UC in today's New York Times

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UCinNC
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Date Joined May 2007
Total Posts : 528
   Posted 2/26/2008 5:47 AM (GMT -7)   
hey Friends - I am about to reveal my anonymity here, but, whatever..... below is a link to a piece I wrote about my UC that is published in today's new york times. my hope is that this piece will raise visibility about our disease. please circulate the story to as many people as you know so that together we can leverage this opportunity to bring UC a bit more into the public sphere and make people less afraid to talk about it. thanks for all your support during this first hard year, and hopefully you'll enjoy my piece. -Loren

<http://www.nytimes.com/2008/02/26/health/views/26case.html>
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!!!!


puglover13
Regular Member


Date Joined Aug 2007
Total Posts : 25
   Posted 2/26/2008 6:00 AM (GMT -7)   
That's a great article - glad to see I'm not alone in my thoughts on all this.  Thanks!
Diagnosed UC June 2007 (mis-diagnosed with IBS for 3 years)
Current meds: Asacol 9/day, iron, multivitamin.
6-MP 50mg, Cortenema, Remicade, Lexapro 10mg/day


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 2/26/2008 6:23 AM (GMT -7)   
It's a great, well-written piece. Congratulations on your publication in the NY Times! And thanks for letting us know that it's you. :)

I'm sure your piece will help a lot of people understand UC better.
-------
UC for the last ten years
Current Meds: 6MP since 2006
Past Meds: You name it; I've tried it.


tjf
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Date Joined Dec 2005
Total Posts : 3238
   Posted 2/26/2008 6:32 AM (GMT -7)   
Wow! Congrats!!!!
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

http://www.healingwell.com/donate
Co-Moderator UC Forum


Numb78
Regular Member


Date Joined Sep 2007
Total Posts : 63
   Posted 2/26/2008 6:41 AM (GMT -7)   
Excellent article. I wish I could share your view of hope.... I have been a very negative person my entire life and I know that I need to change this outlook to help my disease but I just don't know how. I'm losing hope very quickly as I have been dealing with the last flare since last summer, I'm quickly sinking into depression and having a very tough time with life in general right now. Please tell me how you managed to achieve this positive outlook in the face of this awful disease....

I'm sorry to throw my whining into your thread but I do want to re-iterate that you wrote an excellent article and the more info that we can get out there about this disease the better the future will look for all of us.

Thank you...
29 year old male, diagnosed after bad flare in Summer 2005, quickly brought into remission by pred and salofalk.   2 years symptom free after that!! 
Currently in a flare since summer 07 - I desperately miss remission!!!
Current Meds: finally down to 5mg Pred (after months of 40mg), 2000mg salofalk, calcium supplements, Pantoloc, Buscopan, Clonazopam, Cortenema
Started 100mg Imuran Jan 15/08 - no noticeable effect yet...


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 2/26/2008 6:48 AM (GMT -7)   
Very well written :) I think the more people that speak out about Uc the more scientific advancements we are going to have. I like the way you brought the life long struggles we face but yet give hope to all that suffer from Uc. Kudos to you!
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/26/2008 7:03 AM (GMT -7)   
What a terrific piece! In a few well-chosen words, you summarized what we all go through in adjusting to having a chronic disease, while still struggling to see ourselves as whole, healthy persons.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 2/26/2008 7:47 AM (GMT -7)   
Excellent article and thanks for letting others get a glimpse of what people with UC have to deal with.  This illness can make you feel very vulnerable (especially when it's 3 in the morning and you've woken up to sit on the pot!) but I truly believe that having the right attitude will get us through this.  After all, pain in life is inevitable - suffering is optional.
Rio, 31 yr old male - diagnosed with UC in 07/2006.
 
Alternative therapies for several months (SCD, ayurvedic treatment, VSL#3): didn't work and became anaemic. Canasa, 2 daily: remission for a month then flared-up.
07/07-11/07: 4800mg Asacol (6 x 400mg, twice a day) & Aloe Elite.
Completed first (6 week) tapered course of Pred in 10/07, flaring up since coming off it.
11/07: Switched from Asacol to 12 x 750mg Colazal (3 weeks on it and symptoms got worse)
12/07: Asacol 4800 mg, Started Azathioprene 175mg, Prednisone taper from 60mg - Now on alternate days of 20mg and 10mg; 2/08: added 1 Pentasa x 1mg.


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 2/26/2008 8:20 AM (GMT -7)   
Wonderful work! So well written. I am going to forward the link on to as many people as I can! Kudos for sharing about such a "taboo" topic :)
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Aciphex, Effexor XR, Forvia and a Probiotic
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate


superdeejayanna
Regular Member


Date Joined Jul 2007
Total Posts : 77
   Posted 2/26/2008 8:23 AM (GMT -7)   
Excellent piece! I am forwarding to all my family :)

WhiteSox1
Regular Member


Date Joined Oct 2007
Total Posts : 135
   Posted 2/26/2008 8:46 AM (GMT -7)   
Absolutely beautiful.  Brought a tear to my eye. 
 
Thanks for writing and sharing the article.  I, too, have forwared your article to friends and family.
Pancolitis - Diagnosed on 9/6/07
Asacol 4 pills 3x's daily
Imuran 150mg.
Prednisone 10mg.
Canasa
Multi-Vitamins
Calcium with Vit. D Tablets


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 2/26/2008 9:54 AM (GMT -7)   
very good article! Glad you are dealing with this so well.
Beth, 32
Major Flare Sept/Oct 07 ~ no blood since Dec 07 ~ almost normal bm
UC dx'd March 2000 (30 cenitmeters as of 2005-proctosigmoiditis)
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd Sept 2007
Prednisone 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fursomide 20mg 1xday.  Potassium 100mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 2/26/2008 10:27 AM (GMT -7)   
Fantastic article...I will save the link and share it with friends and family.

Thanks,

NBT
Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
Currently taking herbal meds in the search to regain full health.


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5151
   Posted 2/26/2008 11:16 AM (GMT -7)   
Congratulations on getting published in the Times! Will it make any difference to the general public? That I tend to doubt ... people don't realize there's a major incontinence component to IBD that makes living with it a unique & perpetual terror. It's not just bloody diarrhea, fatigue, & weight loss, symptoms associated with many other illnesses/conditions & therefore perceived as less incapacitating to the individual than heart disease, stroke, etc., which get steady publicity. Until some major celebrity admits to pooping his/her pants, IBD is likely to stay on the back burner as a public health issue. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

jano437
Veteran Member


Date Joined Jul 2005
Total Posts : 1613
   Posted 2/26/2008 11:18 AM (GMT -7)   
Great article, thanks for sharing
Diagnosed July 2005 with Pancolitis
Asacol 4 tabs 3 times daily
Pro-Bio
Forvia
calcium
Diosmin(for leg and vein support)


Maureen4RU
Regular Member


Date Joined Dec 2007
Total Posts : 42
   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)


perach
Regular Member


Date Joined Apr 2007
Total Posts : 116
   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


quincy
Elite Member


Date Joined May 2003
Total Posts : 30089
   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 !!!


aquafly79
Regular Member


Date Joined Aug 2007
Total Posts : 317
   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...
 


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   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!!!!


Carlow
Regular Member


Date Joined Sep 2007
Total Posts : 113
   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)


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   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.


damo123
Veteran Member


Date Joined Jul 2007
Total Posts : 714
   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."
 
 
 
 
 
 
 


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4034
   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)


tooth fairy
Regular Member


Date Joined Jan 2008
Total Posts : 98
   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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