Colon Cancer Questions

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Got2Believe
Regular Member


Date Joined Feb 2007
Total Posts : 436
   Posted 5/7/2009 9:20 AM (GMT -6)   
I'm just curious what you all think the chances are for UCers. Do we really have a higher chance and how much of a higher chance? Have any of you ever heard of someone with UC getting colon cancer? How much of a role does genetics play? Does diet play a major role in your opinions? I know I can google it but I want to hear the people's thoughts and not the doctors.

fuzypants26
Regular Member


Date Joined Feb 2008
Total Posts : 38
   Posted 5/7/2009 9:30 AM (GMT -6)   
Just from my experience in the ambulance world, I have transported 4 patients to Cleveland Clinic that were post surgery from having UC most of their lives, then developing dysplasia/colon cancer. I have been in this job for 13 years, and these patients were all in the past year. So in my mind it seems like a pretty high chance. But every one of them did say they had UC from childhood-late teens and didn't have the dysplasia until late 20's or 30's. So apparently the longer you have it, and remain inflammed without getting good control over it the higher your chances. Thats what they were told by their doctors. It makes sense though. I guess the cellular changes may come from the constant inflammation. I could be wrong. That was my take on the situation.

Diagnosed with moderate UC in 2002
Still serving 14 years in the Air National Guard
Colozal 750mgx3, 3 times a day; Prenatal vitamin; B-12; Milk Thistle; Selenium; Vitamin C; Zinc; ; Nightly Rowasa and Culturelle
 


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/7/2009 9:44 AM (GMT -6)   
You can meet many UCers at www.jpouch.org who had surgery either due to colon cancer or due to dysplasia. It is a real risk although if colon cancer is caught early there is a high success rate. Colon cancer is mostly, very slow growing so by sticking close with your GI and getting perioidic colonoscopies it will be caught. Also pay attention to uncontrolled inflammation. Chronic inflammation is what finally tips the scales from no cancer cells to cancer cells.

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


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 5/7/2009 9:54 AM (GMT -6)   
yup, it's the chronic inflammation that does it. My last visit with my GI we were discussing just this, & he was expressing concern because I'm going into year 7 with pretty much barely controlled UC. His take on the cancer risk is this- someone who has constant low-grade inflammation (like most of us!) are much more at risk of developing cancer than someone who has 1-2 big flares a year, then goes into a real remission. I shouldn't say it's "his take", that's pretty much the facts. So many of us here have daily symptoms, indicating chronic low-grade inflammation, despite the big gun meds we take. So, it is indeed a real risk. And colonoscopies do not always catch cancer- those "flat polyps" are hard to see, & if you have a lot of pseudo-polyps it's very easy to miss cancer. I have literally hundreds- it's basically impossible to biopsy every single one, so it'd be pretty easy to miss that one (or 5) cancerous one. I have decided it's my risk to take, I'm willing to chance it- for now. I would never hold my GI accountable if I were to develop colon cancer, regardless of colonoscopies. He's been pushing for surgery for a couple years now. I think you have to make that individual decision- is your colon worth possible dying for? Do you have many polyps or pseudopolyps? Have you exhausted the med regime & are still symptomatic? I don't plan to take this risk forever, but I'd like to hold out a few more years, maybe 'til I'm 40, prior to having surgery. Unless of course things detiorate rapidly.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 5/7/2009 10:16 AM (GMT -6)   
Same here. I fear having to have surgery because of cancer....I constantly worry about it, especially since I am at year 15. I am 35 years old, and have always dealt with UC symptoms in some fashion....My flares do not have a distinct start/stop line - they are blurry and it is more like a gradual transition from flare to having less symptoms, to flare, etc... I am having a very harsh flare right now with a lot of blood...taking 30mg pred and asacol...still bleeding, cramping, urgency, etc...Just found out that I need to start B-12 injections.....I am getting more scared that I will be heading for surgery soon....we havent tried 6MP, immuran or Remicade yet - which I know are my last chances before they recommend surgery....but I am going to also hold out, risk it, and see what develops in the next years as long as I do not have cancer or displacia...
I am not ready to lose my colon yet....I can't mentally deal with it at this point, although if I am forced to make a life or death decision, I am sure it will be much easier to deal with....but contemplating it in my head is very difficult...I have been through major surgeries before and know what recovery is like....I fear the pain and discomfort, as well as having to be hooked to external devices (a bag) even though that is temporary...it has got to be a very hard thing to mentally cope with and accept - I dont feel strong enough at this point to do it....
Stats:35 yr old male. UC for 15 years.
location:North Western PA
DX: Started left-sided, most recent scope shows pancolitis
Medications:20mg pred (as of 4/27/09), 12x pills Asacol per day, 1mg Atavan per day (anxiety) when needed, 20mg paxil per day, Super-omega fish oil pills - 1x per day, Flax oil pills - 1x am, 1x pm, Culturelle probiotics - 2x am, 1x pm, Multivitamin.
Surgeries: Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!)

"I poop in the woods because I can"


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 5/7/2009 11:36 AM (GMT -6)   
me too, mbx5! I just can't mentally cope with it- sure if I had to do it, ok. But to opt for it as a preventive measure...nope. My flares are the same as yours- there's always SOMETHING going on, I see blood every day, urgency, mucous. You ought to give the biologics a try, why wait if you plan to take them eventually? They may really help.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 5/7/2009 1:15 PM (GMT -6)   
Ultimately I will probably be on the biologics - however doing it in slow steps makes me feel like there are more options I suppose.... I called my GI today and told them I was still bleeding, and they have prescribed Imuran 60mg/day which I will start today....

Back to the original topic - for folks like myself and Eva Lou who have had this disease multiple years without ever realizing a formal remission and always have some form of inflammation, I suppose the risks are x-amount higher for cancer. However even with that risk I am moving forward hoping for treatment improvements, or a cure if ever possible....until I am told I am developing pre-cancer cells or my life is in danger, I will deal with the crappy quality of life. That is one's opinion and I do not wish to impose my opinions on anyone....it is the ultimate end result of UC - either it develops into cancer or it doesnt. Some like the comfort of preventative measures - removal of the colon is the cure, and you cant develop colon cancer without a colon...simple.... But again I am not mentally strong enough at this point to make that decision by choice for an improvement of my quality of life.
Stats:35 yr old male. UC for 15 years.
location:North Western PA
DX: Started left-sided, most recent scope shows pancolitis
Medications:20mg pred (as of 4/27/09), 12x pills Asacol per day, 1mg Atavan per day (anxiety) when needed, 20mg paxil per day, Super-omega fish oil pills - 1x per day, Flax oil pills - 1x am, 1x pm, Culturelle probiotics - 2x am, 1x pm, Multivitamin.
Surgeries: Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!)

"I poop in the woods because I can"


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1194
   Posted 5/7/2009 1:59 PM (GMT -6)   
My GI said he knows Crohn's and UC patients who are not on any meds even though they have low grade inflammation in the GI tract but have no symptoms e.g. mucous, blood, diarrhoea, urgency etc... what of those people? I guess the more severre the higher cancer risk?

Diagnosis Oct 07: Mild Crohn's Colitis. Also suffer from bleeding Peptic Ulcers. By the grace of God currently in remission. Current Medication: 800mg Asacol Tablets x 2 a day. VSL#3.


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/7/2009 3:05 PM (GMT -6)   
LondonRed,

Those folks with minimal flares will have a lower risk of developing CC. It's those that battle frequent flares that are more at risk.

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

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