Results from my first colonoscopy ever....

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Samynic
Regular Member


Date Joined Aug 2008
Total Posts : 56
   Posted 12/30/2008 7:07 PM (GMT -6)   
so my UC went from basically proctitis to pancolitis in under 4 years.... nice.


what does it mean for me other than the obvious, that it has spread?
22 years old
Diagnosed with UC June 2005 at age 19
Just graduated from Virginia Tech

Have taken:
Cortifoam, Sulfasalazine, Cipro, Flagyl, Codine, Hydrocodone, Roxicodone, Canasa, Aloe Vera Juice, Prednisone

Currently:
Asacol, Dicyclomine,Zoloft, Probiotics, Flintstones Vitamins with Iron

Never have had a colonoscopy just one sig flex over 3 years ago. Dont really have a GI because No insurance :(


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16036
   Posted 12/30/2008 7:38 PM (GMT -6)   
I don't know the answer to your questions but congrats on getting a colonocopy. I can't get one because I don't have insurance either. Isn't it a terrible feeling? My UC started as proctitis in 07 and has progressed to worse. Not sure how much worse bc I can't afford colonoscopy but I have been running to the toilet a lot lately. Hope you are feeling good.
Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December but had symptoms months ago - Treating with Asacol (feel hopeless)


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 12/30/2008 8:43 PM (GMT -6)   
Well, did the GI say how mild or severe it was? If it's mild, then you'll probably just need 5 ASAs; if it's more severe, you might need stronger meds. How is Asacol working for you?

Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (5 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 10 mg Prozac, VSL #3
 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 12/30/2008 8:45 PM (GMT -6)   
Here's some recent info from those of us w/ pancolitis:
 


Moderate Pancolitis
Dx'd 05/2007
7 Pentasa per day (4/3)
Corti Foam p.m. 2X per week
Prebiotics and Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!


unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 12/30/2008 8:59 PM (GMT -6)   
My GI originally declared it mild to moderate.,,,, But I have been since aug in a flare and have listened to him faithfully. Now My sister is head of cancer research forthe local Hospital ( clinical trials ) and she says this guy in the best for this disease. I have other clients who work at the cleveland clinic and my GI is a recognised expert in their opinion. And he can't get me into a remission. I feel this is such an individual disease that we have to take our own treatments into hand. We need their help, input, and script pads. But we also need to have a say and an opinion. Most of " the best" get the god complex and its a do as I say situation. Well I did that since AUg... now its time for me to take control. and I have been for the last 20-30 days and my symptoms are getting better. Not sayin his meds aren't helping. Or that I don't need him at all. Just that he sees so MANY patients. I need to be in control on my case. Sorry if this turned into a rant.
 
38 yr old male, NE Ohio
 
diagnosed in aug 2008
30 mg predisone, 9 balsalazide, rowesa enema, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol, 2 probiotic, 2 aloe vera
gluten intolerance... attempting to live no/low gluten
 
**********
update: down to 25 mg pred a day as of 12/25/08


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 12/30/2008 9:13 PM (GMT -6)   
unclebubba - what part of NE Ohio? I am in NW PA....North of Pittsburgh, South of Erie right on the line.

Sorry off topic.
34 yr old male. UC for 14 years. Started left-sided, most recent scope shows pancolitis. 40mg pred (as of 12/16/08), 12 pills Asacol per day, 1mg Atavan per day (anxiety) when needed, Fish oil pills, Culturelle probiotics, Multivitamin. 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"


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 12/30/2008 9:21 PM (GMT -6)   
Well basically, bad news is, once you have pancolitis, you will always have pancolitis (or rather, the chance that it could spread throughout). But the good news is it won't ALWAYS be completely flared. When I was first diagnosed, I was told I had pancolitis. But then a few years later my colonoscopy only showed involvement in the rectum and sigmoid. Ulcerative colitis progresses forward and heals backwards. And with full involvement it's best to be on oral AND rectal meds to get all of it treated.
Good luck, sorry to hear the news but I hope everything gets better for you soon

Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
Lexapro 10mg, Azasan 100mg

 
 


DocGonzo
Regular Member


Date Joined Dec 2006
Total Posts : 151
   Posted 12/30/2008 10:15 PM (GMT -6)   
Sorry, but that's not really true. Pancolitis isn't a specific type of Ulcerative Colitis, it's just a term that refers to the extent of the inflammation. That said, statistically speaking once you get back in remission, and the inflammation subsides, it doesn't matter if you had pancolitis, it doesn't mean that your next flare will involve the entire colon again. In fact, you have just as much chance of getting "pancolitis" again as someone who's never had it. The bad news is, prolonged inflammation will cause scarring, and if you're having a hard time getting pancolitis under control, it will leave scars that can impair bowel motility, cause strictures and generally worsen the long term prognosis. The biggest problem with pancolitis is it's much harder to get under control than limited involvement, and a flare can last a lot longer.

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 12/30/2008 10:41 PM (GMT -6)   
Docgonzo, good info. I have pancolitis and it was dxd back in 5/07 to be mod to severe by the pathology but the GI doing the scope said it was mild...what to believe? Also my latest scopes pathology 10/08 showed no IBD at all...unfotunately two months later after much stress and I'm fighting a flair. Appreciate your feedback and PM me if you prefer. Thanks


Moderate Pancolitis
Dx'd 05/2007
7 Pentasa per day (4/3)
Corti Foam p.m. 2X per week
Prebiotics and Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!


DocGonzo
Regular Member


Date Joined Dec 2006
Total Posts : 151
   Posted 12/30/2008 11:34 PM (GMT -6)   
Hey bbc, well you have to understand that a standard biopsy can only determine the presence (or absence) of inflammation, and the kind of microscopic changes that have occured on that small strip of tissue. A GI will usually do a few biopsies when performing a scope, and will usually go for the most inflamed looking areas. The diagnosis is set by the GI, and a biopsy is only used to confirm that the inital diagnosis is correct. Now, you would think that it would be able to determine for example if you have Crohn's or UC, but it can't. It can, however, determine if the inflammation is infectious in nature, if there is evidence of dysplasia or hyperplasia (which can lead to cancer), if the inflammation is chronic or acute, etc.

What I'm saying is that visual inspection by a GI is more important when determining the severity of the disease, because he can see how much inflammation there is, he can see if there is some stricture formation, colonic friability (normal mucosa doesn't bleed when rubbed gently, inflamed mucosa does), and more. So if he says it's mild, he probably means that, while there is extensive involvement, the degree of inflammation isn't as bad as it could be.

Samynic
Regular Member


Date Joined Aug 2008
Total Posts : 56
   Posted 12/31/2008 12:29 AM (GMT -6)   
I dont believe I am in a flare. I was having ribbon shaped stool and thats why it even got scheduled... needless to say I am very shocked and surprised. Blah. All she did was put me on prednisone, for what I dont know. Inflammation I assume but I feel in remission other than the painful passing of stool.
22 years old
Diagnosed with UC June 2005 at age 19
Just graduated from Virginia Tech

Have taken:
Cortifoam, Sulfasalazine, Cipro, Flagyl, Codine, Hydrocodone, Roxicodone, Canasa, Aloe Vera Juice, Prednisone

Currently:
Asacol, Dicyclomine,Zoloft, Probiotics, Flintstones Vitamins with Iron

Never have had a colonoscopy just one sig flex over 3 years ago. Dont really have a GI because No insurance :(


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5163
   Posted 1/1/2009 4:33 PM (GMT -6)   
The "ribbon-shape" indicates that the lumen (hollow space) of your colon has narrowed, a common development with UC inflammation. That's what gives you pain when you're trying to pass stool. Prednisone is a high-powered anti-inflammatory that should (taken as directed) relieve the inflammation so that your lumen returns to a more normal width; then the stool can pass thru more easily. The lumen is like the hollow of a tunnel-- you don't want it to get so narrow that it blocks. Take care of yourself, eh? / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5957
   Posted 1/1/2009 5:14 PM (GMT -6)   
     I'm a bit confused.  When I was admitted to the hospital in May the CT scan indicated inflammation throughout the colon.  My amylase and lipase were WAY high meaning pancreatic problems.  That was on May 4th early a.m.  I was taken off the 6MP, given high dose of prednisone (60 mgm via pic line), Colazal, Cort enemas, Canasa plus 3 blood pressure meds for extremely high blood pressure.  By Thursday my pancreatic enzyme levels had returned to normal.  I had the colonoscopy the next day..Friday.  Colonoscopy showed ulcerative proctitis..mild/moderate with no inflammation in the upper colon.  Wonder why the CT scan showed inflammation throughout the colon?
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30366
   Posted 1/2/2009 2:51 AM (GMT -6)   
That is interesting Christine...there are degrees of inflammation...could be part of the reason...the other could be that the 6MP you were on previously plus high dosage pred via pic could have dealt with the inflammation fairly quickly. It seems UC heals from up to down.....interesting, nonetheless.

What were the biopsy results of your c-scope at that time? They could show microscopically what cannot be seen...even if mild.

q
*Heather* Status..Asacol 6 (3 twice daily); flaring since Dec 22, enemas nightly (sigh!!)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate).... @ bedtime
~various digestive enzymes as needed
~Ranitidine (reflux);  Effexor XR 75mg(depression);  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 !!!
 


unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 1/2/2009 7:08 AM (GMT -6)   
MBX5.... sorry just saw your question. Am 30 minutes est of canton. about 15 minutes west of lisbon.
 
38 yr old male, NE Ohio
 
diagnosed in aug 2008
30 mg predisone, 9 balsalazide, rowesa enema, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol, 2 probiotic, 2 aloe vera
gluten intolerance... attempting to live no/low gluten
 
**********
update: down to 25 mg pred a day as of 12/25/08


skikraz
Regular Member


Date Joined Oct 2008
Total Posts : 49
   Posted 1/2/2009 3:00 PM (GMT -6)   

Moved from the Akron area 22 years ago, It still home to me!

next year.......go browns!


Diagnosed 2/08 mild UC/Proctitis
c diff 11/08
40mg predisone--tapering
flagyl
viconsin 4x day
ambien
canassa 2x day
lialda 2x day my daily med


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 1/2/2009 8:33 PM (GMT -6)   

Thanks for all the info : )

My GI doc said there are a small % of patients where there are no leftover tell tale sign the disease was even there when in remission but in the majority it leaves traces of previous damage.  Don't get me wrong, I 'm happy that my colon fully returns to normal when in remission...just wish remission would last longer than 2 months : (.

DocGonzo said...
Hey bbc, well you have to understand that a standard biopsy can only determine the presence (or absence) of inflammation, and the kind of microscopic changes that have occured on that small strip of tissue. A GI will usually do a few biopsies when performing a scope, and will usually go for the most inflamed looking areas. The diagnosis is set by the GI, and a biopsy is only used to confirm that the inital diagnosis is correct. Now, you would think that it would be able to determine for example if you have Crohn's or UC, but it can't. It can, however, determine if the inflammation is infectious in nature, if there is evidence of dysplasia or hyperplasia (which can lead to cancer), if the inflammation is chronic or acute, etc.

What I'm saying is that visual inspection by a GI is more important when determining the severity of the disease, because he can see how much inflammation there is, he can see if there is some stricture formation, colonic friability (normal mucosa doesn't bleed when rubbed gently, inflamed mucosa does), and more. So if he says it's mild, he probably means that, while there is extensive involvement, the degree of inflammation isn't as bad as it could be.

Moderate Pancolitis
Dx'd 05/2007
7 Pentasa per day (4/3)
Corti Foam p.m. 2X per week
Prebiotics and Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!

New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, April 19, 2018 11:18 AM (GMT -6)
There are a total of 2,953,176 posts in 323,979 threads.
View Active Threads


Who's Online
This forum has 162056 registered members. Please welcome our newest member, PhantomColon.
388 Guest(s), 12 Registered Member(s) are currently online.  Details
nix1262, pam lewellen, Annastazya, Beccak, Girlie, mpost, Dharmacolm, Lynnwood, tomobrain, kit49, Tall Allen, iPoop