Victory over UC - a must read especially for you guys!!

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kops2da
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Date Joined Jun 2008
Total Posts : 2865
   Posted 2/25/2009 8:31 PM (GMT -6)   
 
Courageous, determined and an example for us all!
ElaineNY

sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 2/25/2009 8:55 PM (GMT -6)   
that really made me smile. Thanks I needed to read that.
Kara, 22F Married.
Latest-Went to ER cuz I couldn't eat for 5 days and was having severe flare up after passing two kidney stones after a week of the flu. (long month)
GI is currently trying to taper me off of pred fairly fast in hopes to keep me on Lialda and at a lower dosage of pred. to try mesalamine enemas again. Hope it works...if it doesn't.. I go on Imuran and am on pred longer. *crosses fingers*
Medications:Prednisone 40mg Again! (groan)Lialda 4 a day Antibiotic-Amoxyclln
I am so sick of this disease!
 
 


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 2/25/2009 10:09 PM (GMT -6)   
thanks!

mjw82704
Regular Member


Date Joined Dec 2006
Total Posts : 251
   Posted 2/25/2009 10:39 PM (GMT -6)   
That is motivating. I was just sitting here thinking that I would really like to have surgery.
Female, Left-sided colitis diagnosed at age 28 in 2001
Currently, I am in a terrible flare after taking Augmentin (antibiotic)
Trying to drink Glucerna for nourishment but even that upsets my stomach sometimes.
All my meds are approved by the doc. for breastfeeding but they still make me nervous.
3.5mg Low Dose Naltrexone (Stopped taking, didn't have time to wait for it to work), Prednisone 40mg, Zoloft, Asocal (but they are going straight through), enemas=hydrocortisone, Meselamine, vitamin E suppositories (I can bearly hold enemas in and they irritate). Prenatal vitamins, Juice Plus, Expecta DHA,Emergen C, VSL $$$$$ ( (Not taking all of my supplements right now they hurt too badly) Starting 1st Remicade infusion as of 2/24/09.


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 2/25/2009 10:54 PM (GMT -6)   
i would totally do surgery... but i'm worried bout my fertility
Kara, 22F Married.
Latest-Went to ER cuz I couldn't eat for 5 days and was having severe flare up after passing two kidney stones after a week of the flu. (long month)
GI is currently trying to taper me off of pred fairly fast in hopes to keep me on Lialda and at a lower dosage of pred. to try mesalamine enemas again. Hope it works...if it doesn't.. I go on Imuran and am on pred longer. *crosses fingers*
Medications:Prednisone 40mg Again! (groan)Lialda 4 a day Antibiotic-Amoxyclln
I am so sick of this disease!
 
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 2/26/2009 9:01 AM (GMT -6)   
Thanks so much for posting this!
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  Remission
Asacol 12 per day,  Azathioprine 50mg, Aciphex, Effexor XR, Forvia, Fibercon, and Culturelle
Remicade: 1st infusion 06/17/08:  Next infusion: end of March or early April
Last Prednisone dose:  7/15/08
 
Co-Moderator UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 2/26/2009 9:57 AM (GMT -6)   
I think it's awesome that someone with a chronic illness can overcome many obstacles to achieve what they set out to do. Thank you for sharing :)
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Shadam
Regular Member


Date Joined Jan 2009
Total Posts : 307
   Posted 2/26/2009 8:21 PM (GMT -6)   

Thats a really cool story!!

 

Kops2da, are you from Syracuse?  I went to college at SUNY Oswego!


Age: 25 / Male / Florida
Diagnosed: 11/08 / Pancolitis
Asacol - 2 x 3 day (waiting for results)
Prednisone / ended 1/09 (started at 30mgs and tapered down)
Daily Green Tea, de-shelled sunflower seeds & spinach and 1 Multi Vitamin a day
Metamucil - 1 capsule a day


Test Flyer
Regular Member


Date Joined Feb 2009
Total Posts : 27
   Posted 2/26/2009 8:52 PM (GMT -6)   

I'm a pilot also - and I can say for certain that UC can be a huge hurdle when crusing at 15,000'.....always careful not to eat too much before going flying and all the other precautions all of us with UC have to take before doing normal things that are away from bathrooms....

This story is proof that anything is possible.

 


Left side UC
diagnosed 1990
Azulfidine medicated
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/26/2009 10:40 PM (GMT -6)   
I think thats an awesome story! its great for those of you who may be facing surgery to see that you really CAN do anything afterwards, and also great beause it shows that you can overcome UC.

kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/26/2009 10:41 PM (GMT -6)   

Shadam - yes, we live in Oswego county - about 30 miles from Oswego City.  Where are you now? Oh, I see you are in Florida - where I wish I was but only for winter.  Love the Orlando area.

Cold here, snowy, etc. just like I am sure you remember!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008
Tried all mesalamines and enemas, Canasa, etc.  Colonoscopy 10/28 showed only few cm. left to heal -hydrocortisone enemas 12 days - much worse. Cannot tolerate mesalamine!
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 Feb. 21 - down to 20 mg. - no blood, no pain, no bad side effects so far. Starting 6-MP Feb. 28 along with 20 mg. prednisone.
Probiotic Align, Prilosec for GERD
 
 
 


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/26/2009 10:55 PM (GMT -6)   
I agree...what a wonderful story! I love that UC was focused on and someone was able to tell their story publically!!!

After having my surgery just three weeks ago, I cannot tell you how amazing life is as of now! Just imagine how awesome it's going to be a month from now...and a year from now!!! I am a very busy woman with a full-time job, one part-time job that I am going to maintain (another I quit b/c I wasn't happy doing it any longer), and I'm in grad school an hour away from home. I also have a toddler and a niece and nephew I try to keep at least once a week...which I will do again once I'm fully recovered. I love my life...I love being busy...and UC was starting affect my career and ability to follow through with my responsibilities. Like the pilot the surgery is allowing me to maintain my career and even I feel that I will be able to be even better with my interventions and provide a better service to my clients!

I know there are many people on this board that have had the surgery as well...almost everyone I've spoken with says that their quality of life has been rejuvinated. It's a very emotional and amazing experience. So for those of you possibly facing surgery in the future you are more than welcome to start expressing your thoughts, feelings and concerns on the ostomy board...we are more than happy to help you in any way!!!

I am so glad this story about the pilot was posted...Thank You!!! : )
: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/26/2009 11:02 PM (GMT -6)   

I am happy so many enjoyed his story.  I know some here will face surgery in the future.   I am 68 so think I can avoid it but you never know.  Good to know there is life after surgery - many times a better life!

I was on a bowling league when about 30 years old with a woman for about 6 years and never knew until then that she had her colon removed and an ostomy (?).  She was young, healthy and very active.  Certainly seems a great tradeoff for all the medications, hospital stays and pain many here are going through!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008
Tried all mesalamines and enemas, Canasa, etc.  Colonoscopy 10/28 showed only few cm. left to heal -hydrocortisone enemas 12 days - much worse. Cannot tolerate mesalamine!
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 Feb. 21 - down to 20 mg. - no blood, no pain, no bad side effects so far. Starting 6-MP Feb. 28 along with 20 mg. prednisone.
Probiotic Align, Prilosec for GERD
 
 
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 2/27/2009 7:45 AM (GMT -6)   
Such a great story! Thanks for posting, kops2da.

Sometimes I just want to have surgery to get this stupid disease over with...but I'm a chicken and not a risk taker!
Female, Age 20 (formerly ComedyDork)
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (6 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 20 mg Prozac, VSL #3
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/27/2009 9:18 AM (GMT -6)   

bookworm - that is not being chicken - that is being smart.  ANY surgery can be dangerous and is certainly a risk.  My husband has had several surgeries - all turned out ok but just repairing his ear his heart stopped and they had to revive him.  AND - recovering is another story.  Surgery to be much to life saving or I would not consider it - just me!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008
Tried all mesalamines and enemas, Canasa, etc.  Colonoscopy 10/28 showed only few cm. left to heal -hydrocortisone enemas 12 days - much worse. Cannot tolerate mesalamine!
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 Feb. 21 - down to 20 mg. - no blood, no pain, no bad side effects so far. Starting 6-MP Feb. 28 along with 20 mg. prednisone.
Probiotic Align, Prilosec for GERD
 
 
 


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/28/2009 9:37 PM (GMT -6)   
bookworm...(such a different name than your previous!!!)

I don't think it's being chicken to not opt for surgery right now. You're just not ready. : ) When the time comes that you feel that life just isn't life anymore b/c of the disease you may find a strength in you didn't know existed. It is such a huge decision, having surgery, and it's not one easily made.

Some people do not get to make the decision for surgery and are foced into due to emergency and crisis situations. I appreciated the opportunity to make the choices and perpare as much as one can for this change.

Again, you're not being chicken. Not at all!!! Hopefully you'll never have to be in a position that surgery is an option, but if so, you'll know if the time is right. Your heart and spirit will let you know. : )
: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown

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