Update on Scooterk

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scooterk
Regular Member


Date Joined Dec 2006
Total Posts : 124
   Posted 5/18/2008 8:19 PM (GMT -7)   
Hi everybody. It's been a long time since I posted here. I just wanted to give a quick update to those of you with whom I engaged in discussions regarding my disease.

Anyway, I'm doing GREAT. I have been in remission ever since about the middle of last year when I returned to the US from Germany where I received the Adacolumn treatment for 3 months in an open label clinical trial. I was in the group which received 10 treatments over a couple months. It did not seem to work for me whatsoever, as my exit c-scope looked just like my entry c-scope.

When I returned home, I met with my GI who, knowing how hesitant I was to try remicade, agreed to put me on maximum doses of Lialda (4/day) and Canasa (2/day). Within say 2 months, without any other treatments at all, I was feeling well enough to return to work, where I remain to this day.

At my last c-scope, my GI found about 40 possible polyps which he removed and sent to the lab. Turns out they were all pseudopolyps (non-cancer, benign) and I looked totally healed! I have lots of scarring which is why I will probably always have "bathroom issues" but they are NOTHING like what I used to have to deal with (incontinence, urgency, bleeding, 20 trips a day, cramping, depression, etc.).

I don't know if the adacolumn helped in a delayed way. I'm not sure if any of those other modalities would have worked (I tried fecal infusion, lidocaine enemas, lecithin enemas, olive oil, omega-3 ... actually, I'd be surprised if there's anybody who tried more things and more radical things than I did).

My current diet is completely without restriction. I don't take any other meds than the 2 I've listed. I am a trial attorney and I have no problem working full time plus.

So. There it is. It turns out that the 5-ASA meds actually DO work for me, it's just that I need to take them in high doses.

I thank God for every bit of health He gives me, and every day above ground is a good day.

Don't give up; it took me several years to find what worked for me.

GOOD LUCK TO ALL OF YOU!

Scooterk
Disease History:
1999: Ulcerative proctitis --> 2002: pancolitis --> 2006: 40cm left-sided colitis.

Current meds:
Lialda-4 pills in the am, Immodium-no longer needed, Lidocaine enemas-3oz/400mg twice a day.

Current condition:
Getting much better ...


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 5/18/2008 9:58 PM (GMT -7)   
Thanks for the update, scooterk. It's always nice to hear a success story.

Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
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.


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 5/18/2008 10:11 PM (GMT -7)   
Great news!

quincy
Elite Member


Date Joined May 2003
Total Posts : 30108
   Posted 5/19/2008 1:11 AM (GMT -7)   
Thanks for your posting!

So, you're on Lialda and Canasa...still the same dosages?

Curious..what 5ASA meds were you on originally? before you did the other treatments?


Be well!

quincy
*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 !!!


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 5/19/2008 6:14 AM (GMT -7)   
Awesome news, Scooterk; it's always great to hear success and it gives others hope. Take care and check in every once in a while and let us know how you are doing! :-)
Carol

Remicade - will have my 21st infusion on April 17.
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


BumTum
Regular Member


Date Joined May 2006
Total Posts : 304
   Posted 5/19/2008 8:37 AM (GMT -7)   
Congratulations.  We love to hear those good stories.

  • Pancolitis since 5/06 at age 50, IBS since childhood
  • Degenerative Disc Disease/Spinal Stenosis - L4 and L5
  • Prescribed: Asacol, Atenolol, Zoloft, Synthroid, Menest, Crestor 
  • Prescribed: Xanax & Hydrocodone as needed
  • OTC:  Probiotic 15-35, Multi Vitamin, B Complex, Turmeric, Fish Oil, Biotin
 
 
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 5/19/2008 12:06 PM (GMT -7)   
Hooray for remission!

So glad to hear you're feeling well :)
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Getting close to remission!?!?!
 
10mg pred, Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate

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