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princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 7/1/2009 9:15 AM (GMT -6)   
Finally got official results back from my scope on Monday, June 22. Tissue samples showed no signs of inflammation and biopsies were all normal... no cancerous or even precancerous cells, in spite of my doc's warnings about colon cancer risk after year ten of UC. B12 and folate levels well within normal ranges. Life is good.
Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips. Scope on 6/22 showed no inflammation at all.
 
Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.
 
 


Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 7/1/2009 9:28 AM (GMT -6)   
Great news...And life is good!
Rio, 33 year old male. Diagnosed with UC in 2006
100 mg Azathioprine (stopped), 4800 mg Asacol
VSL#3 & Primadophilus Bifidus, Metamucil
Vitamin E enema or Asacol suppository occasionally


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 7/1/2009 9:46 AM (GMT -6)   
Awesome news, Princesa!

Carol

Remicade - will have my 29th infusion on July 8
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 7/1/2009 10:22 AM (GMT -6)   
Yay! :)
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


quincy
Elite Member


Date Joined May 2003
Total Posts : 30614
   Posted 7/1/2009 10:27 AM (GMT -6)   
Absolutely great news! I felt the same elation after the 18 year mark c-scope results. Unremarkable is a good thing!

When's your next scope?

Just to add that the likelihood of cancer would increase if there's more constant inflammation.

quincy
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 7/1/2009 11:09 AM (GMT -6)   
That's wonderful news - congrats!!!
32 yr old female
Mild Pancolitis
UC since 2000 - in remission for most of those 8 years med free.
Cannot tolerate mesalamine. Trying Applied Kinesiology & supplements.


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 7/1/2009 1:05 PM (GMT -6)   
quincy said...
Absolutely great news! I felt the same elation after the 18 year mark c-scope results. Unremarkable is a good thing!

When's your next scope?

Just to add that the likelihood of cancer would increase if there's more constant inflammation.

quincy

Congrats to you, too! I think it's important for us to share our successes to encourage others.
 
My GI wants me to have one annually now, but I refuse to put myself through the trauma of the prep more than once every two years. Given the excellent results on this scope, I may push for waiting three years.
 
When he started pressuring me to have annual scopes at the ten year mark, I argued that my cancer risk must be low since I've been mostly in remission for the last eight of those ten years. He told me it didn't make any difference, which I find difficult to believe.
Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips. Scope on 6/22 showed no inflammation at all.
 
Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.
 
 


AmyWaffle
Regular Member


Date Joined Jun 2009
Total Posts : 173
   Posted 7/1/2009 1:20 PM (GMT -6)   
My doc says yearly too. I thought maybe the cancer risk would coincide with amount of inflammation over the course of the disease too. But I guess not? Weird!
Glad to hear your good news.
Amy
UC since 1996 (age 20)
Mommy of 2 sweet little girls.
My life is one big flare.

Asacol, Azathioprine, Prednisone, Rowasa
First Remicade 6/22/09


frombc
Regular Member


Date Joined Oct 2006
Total Posts : 219
   Posted 7/1/2009 1:43 PM (GMT -6)   
Great news indeed!

That really doesn't make sense does it. Those Drs are implying that someone who has mild low in the colon disease with very little inflammation has the same risk factor for cancer as someone who has pan colitis with almost constant inflammation, just based on the number of years you've had UC.

I highly doubt it. It makes no sense. Everything I've read says that the lower in the colon the disease is restricted to the lower the risk of cancer. Someone with proctitis has a lower risk than someone with pan-colitis according to those articles. I'm not sure how the inflammation factors in with someone with proctitis.

They do love to confuse us don't they?
50 year old female
Dx'd with proctosigmoiditis July/06
Salofalk enemas 4(g) at bedtime every 3rd night
...Aloe
Vit B complex/folic acid
fish oil (pharmaceutical grade)
VSL#3


quincy
Elite Member


Date Joined May 2003
Total Posts : 30614
   Posted 7/1/2009 6:26 PM (GMT -6)   
princesa...every year??? NOT if you have clean scopes. I still do every 3 years. My risk has increased now that I have PSC....

I've not had anything wonky, and my doc hasn't threatened me either. I am, however, on 5ASA meds and use them faithfully, which is also believed to help with preventing colonic cancer.

So, I guess next time will determine the schedule...however, if all is fine, then another 3 years unless symptoms change. He takes for sure 30 - 36 biopsies, but I guess there's always a spot that could be missed.


I've been with my GI for 20 years...I soooo dread the day he retires....!!

q
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5182
   Posted 7/1/2009 9:04 PM (GMT -6)   
Brava! That's great news, indeed. Too bad your gastro seems obsessed with that 10-yr business. They are really covering for themselves when they insist on annual c-scopes after the "marker" yr. CRC does not depend on any single known factor. One has to proceed with the level of diagnostic risk one feels comfortable with, and I agree with you that annual purges/scopes carry their own risks-- of needless flares, for example. Some UCers are at higher risk, though, due to family history of colon cancer so "marker" yrs make more sense in that situation. / Old Hat (30 yrs with left-sided UC ... [etc.])

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 7/2/2009 4:51 AM (GMT -6)   
I agree with Heather, if you've had clean scopes and limited Uc then a yearly scope shouldn't be necessary. I go every 2 years myself, not 3 like Heather mainly because of my severity and length of my flares plus the 17 years I've had this. But whoohoo! I'm so glad things come out great!
 @--->--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 ALL mesalamines**~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-had 2 series of 3, OA-Celebrex, Tylonel Arthritis and Voltaren Gel
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princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 7/2/2009 8:09 AM (GMT -6)   
Q, I also take a maintenance dose of an ASA and was pleased to read it lowers the risk of colon cancer. I figure I'll have another scope in two years and if that one's as good as this last one, I'll go to every three years. I know a doctor can't force you to have a diagnostic test, but I hate being lectured everytime I go in for a six month check up. To be honest, I kinda resent not being given any credit for successfully managing my UC for so many years. No doc I've seen has questioned my success or really even commented on it. The gloom and doom, "this is totally out of your control" mentality gets a little old.
Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips. Scope on 6/22 showed no inflammation at all.
 
Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.
 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 7/2/2009 8:31 AM (GMT -6)   
Your GI is probably covering for himself in the event you choose not to have yearly scopes and were later dx with dysplasia. I no longer have a colon yet still have to have biopsies for colon cancer. My doctor recommends 9-12 month screenings but I opt for every other year. You can choose the timeline as long as you understand and can live with the risks.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


shortstuff1
Regular Member


Date Joined Feb 2009
Total Posts : 80
   Posted 7/2/2009 11:21 AM (GMT -6)   
So excited for you Princesa!!! It's wonderful for you to post your great news :)
29 yr old recently diagnosed with UC in Nov 08. Taking Asacol 3 times daily and Steriod enemas 2 times daily. no children, very active;
Started Remicade 6/25/09


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 7/2/2009 12:03 PM (GMT -6)   
suebear said...
Your GI is probably covering for himself in the event you choose not to have yearly scopes and were later dx with dysplasia. I no longer have a colon yet still have to have biopsies for colon cancer. My doctor recommends 9-12 month screenings but I opt for every other year. You can choose the timeline as long as you understand and can live with the risks.

Sue

Not sure I follow. If you've had a colectomy, how could you get colon cancer?
Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips. Scope on 6/22 showed no inflammation at all.
 
Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30614
   Posted 7/2/2009 12:30 PM (GMT -6)   
Hi princesa....I agree regarding not being given credit for making some efforts to maintain and care for UC inflammation. I guess some docs, however, see some patients not do well with continual med intervention...so maybe to some of them, it's basically "luck".
I said to my doc with my last scope results "Thank you 5ASA"...he said, without your efforts, it would be useless...so, I was pleased with that part.

I have one request from you....could you please type 5-ASA...since ASA as itself means aspirin?? two totally different beasts, although both are salicylates. the ASA in 5-ASA means aminosalicylic acid. The ASA in ASA means acetylsalicylic acid..can be confusing when many are told by their doctors to not take aspirin.

Regarding your c-scopes..you might want to say to your doc you will do it in 2 years, and if all is clear, do it in three from then on unless something comes up that you need to have a look-see.

quincy
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30614
   Posted 7/2/2009 12:31 PM (GMT -6)   
Sue...I'm confused as well...unless you mean the rectal cuff and cecum or the part that's the j-pouch needs to be checked?

quincy
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 

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