How to rule out Crohn's Once and For All

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bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 1/29/2009 1:04 PM (GMT -6)   
Is there a specific test to totally rule out Crohns? I have had my terminal illieum biopsied both during a nasty flare and not and the diagnosis is always UC...I really want to be sure especially since I have a fissure and am now getting a bad rash on my inner buttocks and around my anus.
 
Thanks : )
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 5X per week and canasa every other day
Natural anti fungal, anti inflammation supplements and Probiotics.
Bowel Soother and IntestiNew, Fish Oil, Calcium, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Reduced sugar in my diet by at least 70%
Reduced wheat products by 70% 
Could never tolerate artificial sweetners
I excersice daily (unless like now : (  I've lost too much weight)
Did I happen to mention I HATE this disease!!!
 
*Recent Changes In Blue*


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 1/29/2009 1:08 PM (GMT -6)   
Have you had the Prometheus IBD Serology 7 test? PROMETHEUS® IBD Serology 7 is a test to help your physician determine if you have Inflammatory Bowel Disease (IBD), and if so, which type: ulcerative colitis or Crohn’s disease. Test results may provide your physician with prognostic and other useful information, and help determine the best course of treatment. I believe I was told it was over 90 percent accurate.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine. Probiotics, l-glutamine, vitamin D and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Mostly grain-free and dairy-free diet. Long-term remission with only minor blips.
 
 


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 1/29/2009 1:50 PM (GMT -6)   
There is no one test to rule Crohn's in or out. The Prometheus testing is so flawed that major IBD centers, like the Cleveland Clinic, don't even use it for making a determination. My surgeon also discounts its results. Whats left is kind of a jigsaw puzzle, taking patient symptoms along with small bowel CT scans, colon biopsies, bloodwork and response to medications for the GI to make his/her best guess. As mentioned a zillion times before, my GI thought I had Crohn's. I thought I had UC. My surgeon agreed with me and pathology on the exised colon indicated UC.

I know this is extremely frustrating.

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


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 1/29/2009 2:10 PM (GMT -6)   
Thanks Sue.

CT scans never produced anything for me even when I was hospitalized with a very bad flare.

So is it reasonably safe to say that if the biopsies taken in my terminal illieum were clear in the midst of a very very bad flare then I shouldn't worry so much about CD?
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 5X per week and canasa every other day
Natural anti fungal, anti inflammation supplements and Probiotics.
Bowel Soother and IntestiNew, Fish Oil, Calcium, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Reduced sugar in my diet by at least 70%
Reduced wheat products by 70% 
Could never tolerate artificial sweetners
I excersice daily (unless like now : (  I've lost too much weight)
Did I happen to mention I HATE this disease!!!
 
*Recent Changes In Blue*


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 1/29/2009 2:37 PM (GMT -6)   
I have crohn's colitis, which is crohn's affecting my colon (where UC typically hangs out), now when I first got sick my CD was affecting my colon, rectom, TI and anus and it did so for the first 2-3 yrs of getting CD but in the last 15 yrs it's only stayed constant in my colon and anus, comes and goes in my rectom so the best way to rule out CD is the pattern of inflammation seen via colonoscopy, with CD there are skipped patterns of inflammation with healthy tissues in between, with UC the entire area will be inflammed with no skipped patterns and with CD the inflammation can go through the many layers of the intestinal lining, with UC it always remains surfacable only.

Also, it's estimated that about 2% of IBDers have both CD and UC, very rare but it happens.


:)
My bum is broken....there's a big crack down the middle of it! LOL :)


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 1/29/2009 2:52 PM (GMT -6)   
Geez PB4 that's alot to deal with...God bless you : )

I have pancolits so the entire colon get affected so perhaps that's is a good indicator?

I wonder due those with pancolitis every get CD sice pancolitis affacts the entire colon?

Thanks
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 5X per week and canasa every other day
Natural anti fungal, anti inflammation supplements and Probiotics.
Bowel Soother and IntestiNew, Fish Oil, Calcium, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Reduced sugar in my diet by at least 70%
Reduced wheat products by 70% 
Could never tolerate artificial sweetners
I excersice daily (unless like now : (  I've lost too much weight)
Did I happen to mention I HATE this disease!!!
 
*Recent Changes In Blue*


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 1/29/2009 3:59 PM (GMT -6)   
Pan colitis is just a term used to mean the entire colon is inflamed but it is still a result of having UC, typically in UC one area of the colon will be inflamed, but when it spreads to the entire colon it's referred to as pan colitis. CD doesn't necessarily affect the entire colon as UC can (pan colitis) and with CD there are skipped patterns of inflammation (healthy tissues in between inflamed), if you have pan colitis then it's safe to say that CD is not likely an issue for you.

Yes, it has been a lot to deal with, never being if full remission for the last 18 yrs now has been a hard pill to swallow so I have no choice but to take it day by day, or more like, moment to moment...guess that's just the way the cookie crumbles.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 1/29/2009 4:13 PM (GMT -6)   
Pb4 I have been living day to day as well and really took a turn downward in the last month...the pain in my tailbone and inner buttocks is so bad I can hardly sit no to mention my fissure is ripped open again which has it's own pain, I'm actually off to see a new gi doc right now.

I feel for you having the burden of both uc and cd and you will be in my prayers. I know surgery only cures uc but if you eliminate that will it at least be easier to manage the cd alone?
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 5X per week and canasa every other day
Natural anti fungal, anti inflammation supplements and Probiotics.
Bowel Soother and IntestiNew, Fish Oil, Calcium, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Reduced sugar in my diet by at least 70%
Reduced wheat products by 70% 
Could never tolerate artificial sweetners
I excersice daily (unless like now : (  I've lost too much weight)
Did I happen to mention I HATE this disease!!!
 
*Recent Changes In Blue*


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 1/29/2009 11:41 PM (GMT -6)   
No sweetie, I don't have both UC and CD, I have crohn's colitis, which is CD affecting my colon...but with no remission for the last 18 yrs does suck, but it is what it is...thanks for your caring words though.

If I were to get my colon removed, my CD would just end up affecting my small intestines anyways which is why CD is known as the "cut-away disease" because they just kepp cutting and cutting til there's nothing left to cut.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 1/29/2009 11:56 PM (GMT -6)   
: (
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 5X per week and canasa every other day
Natural anti fungal, anti inflammation supplements and Probiotics.
Bowel Soother and IntestiNew, Fish Oil, Calcium, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Reduced sugar in my diet by at least 70%
Reduced wheat products by 70% 
Could never tolerate artificial sweetners
I excersice daily (unless like now : (  I've lost too much weight)
Did I happen to mention I HATE this disease!!!
 
*Recent Changes In Blue*


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 1/30/2009 11:05 AM (GMT -6)   
pb4 said...
If I were to get my colon removed, my CD would just end up affecting my small intestines anyways

Pb4-- you state this as a fact, but isn't it a risk, not an inevitable fact- i.e. some with Crohn's Colitis (CC) i.e. CD limited to the colon, get their colon removed and do NOT have it spread.  Also, are cancer risks for long-standing Crohn's colitis and UC the same?  If so, wouldn't colectomy be indicated for some with CC even with the risk of spread, post-surgery?  I am one of those with the 90%ish UC diagnosis (including a 95% claim, but apparently useless according to both Cleveland Clinic and Mayo Clinic, Prometheus test) and am trying to decide on how much longer to fight this stupid disease without surgery, but the risk that it CC is one factor that now keeps me fighting.
 
Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
12.5ish mg pred, 100 mg Imuran TCM (acupuncture & herbs)
Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade
 
 
 


megger
Regular Member


Date Joined Oct 2008
Total Posts : 62
   Posted 1/30/2009 5:55 PM (GMT -6)   
When I was first diagnosed with Pancolitis my general surgeon sent me for a barrium meal x-ray. It was able to light up my small colon and terminal illeum to see if I was affected with Crohn's as well. My mom has CD, so the possibility was definately there.

The X-ray came back negative for CD. Not to say that it won't turn up later though. My mom was first diagnosed colitis that eventually turned to CD in later years.
Meghan - 23 years old
 
DX:  Pancolitis since October 2008
Current Treament:  Asacol (3 pills 4 times daily)
Natural Treatment: Daily Multi-Vitamins, Natural Factors Protec Probiotics, Activia Yogurt mixed with All Bran Buds, Soluble Fibre (Metamucil),  Chamomile Tea
Previous Treatment:  Prednisone (40 mg - 5 week taper), Entocort Enemas, Buscopan
Status:  Mild Flare


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 1/30/2009 10:01 PM (GMT -6)   
Probiotic said...
pb4 said...
If I were to get my colon removed, my CD would just end up affecting my small intestines anyways

Pb4-- you state this as a fact, but isn't it a risk, not an inevitable fact- i.e. some with Crohn's Colitis (CC) i.e. CD limited to the colon, get their colon removed and do NOT have it spread.  Also, are cancer risks for long-standing Crohn's colitis and UC the same?  If so, wouldn't colectomy be indicated for some with CC even with the risk of spread, post-surgery?  I am one of those with the 90%ish UC diagnosis (including a 95% claim, but apparently useless according to both Cleveland Clinic and Mayo Clinic, Prometheus test) and am trying to decide on how much longer to fight this stupid disease without surgery, but the risk that it CC is one factor that now keeps me fighting.
 

With crohn's disease it's pretty much fact, which is why it's known as the cut-away disease, the chances are very great that when diseased area(s) are removed then the disease activity will at some point (usally sooner rather than later) find a new area to destroy, it's the nature of the beast with CD...unlike true UC where when the colon/rectom is removed then you're pretty much IBD free for the rest of your life unless you were misDX and actually had CD or even more unlucky to be in the 2% that have both UC and CD.
 
Cancer risks for crohn's colitis are pretty much the same for UC, basically the longer there is disease activity in the colon, regardless if the inflammation is due to CD or UC (usually also including severity too) the slightly the higher the risk for colon cancer compared to an average healthy person.
 
In general, any good surgeon will always make it clear to their UC patients that there is a risk that they may have CC rather than UC and that if that's the case surgery will not guarantee them an IBD free life...I'm sure they do this to cover their own butts but at least some surgeons will report this risk to their UC patients which is still better than not putting forth the information...especially since there is aprox 2% of IBDers that have BOTH CD and UC.
 
:)
My bum is broken....there's a big crack down the middle of it! LOL :)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 1/30/2009 10:04 PM (GMT -6)   
megger said...
When I was first diagnosed with Pancolitis my general surgeon sent me for a barrium meal x-ray. It was able to light up my small colon and terminal illeum to see if I was affected with Crohn's as well. My mom has CD, so the possibility was definately there.

The X-ray came back negative for CD. Not to say that it won't turn up later though. My mom was first diagnosed colitis that eventually turned to CD in later years.

Or she had crohn's colitis all the while, just for the record, UC doesn't "turn into" CD or vise versa, you either have one or the other unless you're unlucky enough to have both, but one never turns into the other, that's just misDX on the docs part.
 
:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 1/31/2009 8:33 AM (GMT -6)   
pb4 said...
 
With crohn's disease it's pretty much fact, which is why it's known as the cut-away disease, the chances are very great that when diseased area(s) are removed then the disease activity will at some point (usally sooner rather than later) find a new area to destroy, it's the nature of the beast with CD...
 
....there is aprox 2% of IBDers that have BOTH CD and UC.
 
 
Thanks, pb4.  Now, regarding that 1 in 50 IBDers with both UC and CD stat... do you have any link or reference on that?  I have never heard it anywhere.  It's a pretty scary stat but it sounds like something that is still a hypothesis, especially in light of the fact that the medical community is still not very competent at differentiating UC and CD.

Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
12.5ish mg pred, 100 mg Imuran TCM (acupuncture & herbs)
Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade
 
 
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 1/31/2009 2:27 PM (GMT -6)   
Yes, it is hard to find facts on the net for some strange reason, but I posed this question (about patients that have both CD and UC) to the "Ask the Doctor" from the CCFC (of which I'm a member) and they put my question and the docs answer in the summer of 2005 CCFC Journal...and his answer that he wrote in that journal was this...

"crohn's and ulcerative colitis can likely occur in the same individual, but this is unusual because they are 2 rare diseases. However, there are several reports of patients with UC developing CD over time when the DX retrospectively was definitely UC. Most surgeons will quote this risk at a 2-5% when counseling patients regarding surgical options in UC."

That's not to say that UC can turn into CD or vise versa...you are right about the medical community not being very competent so for all anyone knows maybe one patient cannot have both, since his answer does specifically say "reports of patients with UC developing CD..."

You could contact the CCFC and ask them specifically to send you a link to the 2005 summer issue, but other than that I'm not sure where eles you'd find stats/info on this particular topic.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 1/31/2009 3:24 PM (GMT -6)   
Thanks, pb4... It still seems to me, looking at the CCFA site's answer on that query, is that they are not saying that anyone truly has both UC and CD, but rather, as one my GI's told me- that a "definitive" UC diagnosis (i.e. the >99% sure type of dx) can still be changed to CD later and is in 2-6% or whatever of the cases, because "definitive" isn't worth the paper it's written on. In that case having "only" a 90% certainty that mine is UC means the real probability of it being CD (CC) may be much higher than 6%. By the way, is that CCFA 'Ask a Doctor' site running again? I recall years back when it was run by a an amazing semi-retired GI, Eugene May (?), who was incredibly patient answering questions and also, for a GI, remarkably progressive (he believed in probiotics as adjunct therapy and though skeptical of new developments like helminth therapy, kept an open mind about them.) Sadly, I recall that forum and its vast archives being suddenly shut down due to liability issues (which seems silly to me given the "at your own risk/consult your doctor first" boilerplate on the forum headers... but what can you do it today's litigation-crazy society).
Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
12.5ish mg pred, 100 mg Imuran TCM (acupuncture & herbs)
Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade
 
 
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 1/31/2009 4:39 PM (GMT -6)   
I obsessed for a while about whether my diagnosis was really UC or should be CD. I have inflammation and thickening of the bowel wall on the right, ascending side of the colon - while visible inflammation and ulceration from the scope was on the left, decending side. And I've always felt more pain and discomfort on the right side. Twice, doctors have thought I had appendicitis. No one can give me an explanation. I finally decided since the treatments are often the same - particularly the ones that have worked best for me (diet, probiotics, etc.) I would quit worrying about what name tag to stick on myself.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine. Probiotics, l-glutamine, vitamin D and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Mostly grain-free and dairy-free diet. Long-term remission with only minor blips.
 
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 2/1/2009 1:15 AM (GMT -6)   
Probiotic said...
Thanks, pb4... It still seems to me, looking at the CCFA site's answer on that query, is that they are not saying that anyone truly has both UC and CD, but rather, as one my GI's told me- that a "definitive" UC diagnosis (i.e. the >99% sure type of dx) can still be changed to CD later and is in 2-6% or whatever of the cases, because "definitive" isn't worth the paper it's written on. In that case having "only" a 90% certainty that mine is UC means the real probability of it being CD (CC) may be much higher than 6%. By the way, is that CCFA 'Ask a Doctor' site running again? I recall years back when it was run by a an amazing semi-retired GI, Eugene May (?), who was incredibly patient answering questions and also, for a GI, remarkably progressive (he believed in probiotics as adjunct therapy and though skeptical of new developments like helminth therapy, kept an open mind about them.) Sadly, I recall that forum and its vast archives being suddenly shut down due to liability issues (which seems silly to me given the "at your own risk/consult your doctor first" boilerplate on the forum headers... but what can you do it today's litigation-crazy society).

Ya, all I can go by is how the "ask the doctor" (who actually happens to be my GI) answered the question in the journal when I submitted it (it was kinda neat to see my question in the journal and being answered), hopefully as time goes by they'll have a more definite answer when it comes to one patient having both CD and UC, mind you with crohn's colitis, the same meds are used to treat it as used for UC so there's really no difference there at least.
 
I never knew about the CCFC site being "shut down" for a bit, but I do know they don't update it often enough in my opinion.
 
:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 2/1/2009 9:24 AM (GMT -6)   
I was obsessed with this too for a while- which one, which one!?!?!?! I think my diagnosis is "indeterminite colitis"- I'll have to ask my GI about that next time I see him, just out of curiosity. But then too, it dawned on me that the treatments are basically the same, med-wise, diet-wise, you name it. So to me, it doesn't really matter. After I met with a surgeon, he told me the only definitive way to tell is by doing a pathology report on the colon- AFTER it's been removed. The way I look at it, the meds I take will either put me into remission eventually or not. If not, surgery to remove my colon is a likely possibility. So who cares "which" disease I have- the outcomes are the same. And I do believe that a pathology report is the only "true" way to determine which yu have, UC or CD.

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


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/1/2009 9:42 AM (GMT -6)   
I am having a total colectomy this upcoming Friday, and prior to the surgery they wanted to take some precautions regarding possible Crohn's. So I also had a small bowel series completed where I drank that barium and they used an x-ray to see the areas lit up. It was very interesting. The doctor performing the test said that 9 out of 10 times Crohn's is not part of his diagnosis. So I was relieved to hear that my small intestine looks good...it's going to have a pretty big job starting Friday, so I hope it's up for the challenge! I also was told that one of the only ways to be 100% sure about the diagnosis is done with the splice and dice test they do on the colon once it's removed. : ) Nice, huh?

I do feel it is so unfortunate that not only is our diagnosis tricky, but so is the treatment. I have pancolitis and no medications are working...my body seems to think that Remicade is a joke and though Prednisone does take away some of the pain I have had seriously horrible side effects...super long story.

I wish you all the best!!!

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Surgery is scheduled for February 6th!!!  : )   Yea!!!!!!!!!!


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 2/1/2009 3:08 PM (GMT -6)   
Eva Lou said...
I was obsessed with this too for a while- which one, which one!?!?!?! I think my diagnosis is "indeterminite colitis"- I'll have to ask my GI about that next time I see him, just out of curiosity. But then too, it dawned on me that the treatments are basically the same, med-wise, diet-wise, you name it. So to me, it doesn't really matter. After I met with a surgeon, he told me the only definitive way to tell is by doing a pathology report on the colon- AFTER it's been removed. The way I look at it, the meds I take will either put me into remission eventually or not. If not, surgery to remove my colon is a likely possibility. So who cares "which" disease I have- the outcomes are the same. And I do believe that a pathology report is the only "true" way to determine which yu have, UC or CD.


Indeterminant is just that, they just cannot tell if it's UC or CD which is so odd because with CD there are skipped patterns of inflammation and with UC the entire area will be inflammed, so you'd think with that alone they'd be able to give proper DX...the other major differences between the 2 are with CD the inflammation can go through the many layers of the intestinal lining where as with UC it always remains on the surface only and CD can affect any part of the GI tract from mouth to anus, UC is limited to the colon/rectom...so you'd definitely think with those differences they'd be able to give patients proper DX so I guess it just goes to show that when it comes to IBD there are grey areas, as in with CD not necessarily will all the layers of the lining being affected, it can be on the surface only as well, espeically likely with milder cases.

 

:)


My bum is broken....there's a big crack down the middle of it! LOL :)


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 2/1/2009 6:15 PM (GMT -6)   
I totally agree, pb4! With all the differences in the diseases, I don't see why it's so tough to tell one form the other. With all the scopes, CT scans, biopsies & blood work I know we've all had, you'd think it'd be a cinch to definitely diagnosis it. Yet the only consistent way I hear of to tell the difference is a pathology report. And this is said all over the boards, from pre & post-surgery patients, from GI's to colo-rectal surgeons.... it's frustrating. I know for me, as I said, surgery may be in the future- until then, it's just trying to stay afloat with meds. I guess the only way it matters to me is if I want to try Humira- then I'd push for a CD diagnosis, especially based on the fact that I have a fistula. In this way, it's nice to not get a confirmed diagnosis- if you can try meds that are strictly approved for only CD, or only UC, then a little wiggle room is a plus. Other than that..... I suppose we'll all know after surgery, not that it'll matter much by then.

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


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 2/1/2009 6:55 PM (GMT -6)   
It's mind boggling isn't it Eva, and in your case especially with having a fistula (where is yours located by the way?) which happens to be common with crohn's and not common with UC, fistulas are basically tunnels which are created from inflammation going through the many layers (in the casse of a fistula, all layers) of the intestinal lining which is why it's not common with UC since inflammation is surfacable only when it comes to UC.

I was DX with my CD quite easily, mind you I've got the perianal crohn's skin tags (which is where my disease actually started) so it was a no brainer that I have CD even though my CD has been affecting my colon (crohn's colitis) my entire 18 yrs of having this DD, although when I first got sick and DX it was affecting my anus with the tags, my rectom, my colon and my teminal ileum (the TI being the most common place for CD to be), so if it wasn't for those anal skin tags they probably may have misEX me with UC too because of the disease activity in my colon (and my colon inflammation is only affecting the top layer like with UC), although I do have the text-book patchy inflammation which is another CD give-away.

Having a good doc helps too...as well as good lab techs that know what they're doing.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 2/2/2009 10:08 AM (GMT -6)   
good morning..... Anyway, I have an RV fistula- it started as an abscess, in my perineal area. I thought it was a bad hemmorhoid, as I'd been flaring & had eatn a big bowl of chili in the recent past! It hurt like nothing else for a couple days, then the pain started to subside. about 2 weeks after that, I'm sitting at the YMCs waiting for my daughter's swim class to end & I feel this yukky wetness... no bm's, no urgency, just sudden damp. Thought it was my period, went to the bathroom- lo & behold, it was disgusting pus & fecal matter! Ran home ASAP, called my GI, sat in a hot tub to clean everything out. I went on Cipro & Flagyl to avoid infection, it drained nasty fluids for a few dayas, then settled down, leaving a lovely, visible to the eye hole. This was last November- 15 months ago! The meds I am currently on are the mesd they use to treat fistulas- Imuran & Remciade. They've done nothing to close it up, & quite frankly aren't doing much for my UC either. I've resisted surgical repair because it doesn't bother me physically- mentally, hell yeah! Plus, I figure I'll either be getting my colon out in the next year or so (the way I've been going lately, it looks to be sooner rather than later!), so that could be taken care of during that surgery. It sucks. I like my GI & think he's pretty good, but he is sort of lackadaisical about me- his recommendation is surgery, & has been for over a year- I resist, so there's only so much he can do for me, med-wise. I understand where he's at, it's just frustrating. Anyway- BBC, what ever happened with your new GI appointment??? Do tell!

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

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