UC -turned into Crohns?

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kelli_C
Regular Member


Date Joined Jul 2009
Total Posts : 130
   Posted 8/20/2010 4:10 PM (GMT -7)   
Hello, I normally post on the UC boards, but thought I'd pop over here for a peek. :)

Last time I had a Colonoscopy, my doc (who had previously diagnosed me with proctosigmoiditis), told me that he wasn't 100% sure that i had UC, and it was possibly Crohns. The reason being that my inflammation pattern in the colon skipped a section and the ileum was also involved. At that time, i didn't feel sick- it was a regular screening colonoscopy - but the GI still noticed inflammation. I think because the inflammation wasn't bothering me at the time, he didn't feel the need to do further tests.

I'm having a flare-up of blood in my stool right now and will go back to GI a week from Monday. I'd like to find out a little more about the possibility that I have Crohn's rather than UC. Is there anyone out there who was dx with UC then subsequently diagnosed with Crohns? If so, were there differences in symptoms that contributed to the changed diagnosis?

Just curious, thanks so much!!
Kelli
Ulcerative Colitis, dx in 1998 at age 18
Allergic to Sulfasalzine
4 Apriso pills 1x daily
Daily Multivitamin
Living with gallstones, but no surgery unless they get active again
Slightly anemic, so I also take an iron supplement daily

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 14165
   Posted 8/20/2010 5:35 PM (GMT -7)   
I am diagnosed with UC but my doctor has admitted that we have not done the proper testing to eliminate the posiblity of Chrons. Since I have had such a tough time getting into remission, last time I saw her, she mentioned doing further testing so we can get a clear answer. She said that my symptoms, biopsies, colonoscopies all point to UC and a pretty classic case but she also said it is possible that I am dealing with Chrons.

What tests have you had? She mentioned CAT scan to help diagnose, pill cam, endoscopy, a few others too... All I've had so far is colonoscopy and sigmoidoscopy.

I do get symptoms I see people mention here like canker sores and throat cobbleing. I also had patchy inflammation. It is hard to tell if it is truly patchy when you're being treated because the medicine can treat some areas and miss others, especially if you're using rectal meds.
March 2007: Diagnosed with Mild Proctitis - Canasa as needed.
August 2008 - December 2008: FLARE & Anemic - Started Asacol!!
January 2009 - December 2009: REMISSION!! Asacol (9) + Canasa 2x Daily
December 2009 - January 2010: FLARE!! Asacol + Prednisone + Canasa
February 2010 - April 2010: Colazal + Prednisone + Canasa
May 2010 - June 2010: Lialda + Cort Enema + Prednisone : Colonoscopy: Mild / Moderate Active Pancolitis
CURRENT: DOING OK! Prednisone, 6mp, klonopin, Canasa + Vitamin D

kelli_C
Regular Member


Date Joined Jul 2009
Total Posts : 130
   Posted 8/20/2010 5:51 PM (GMT -7)   
in 1998 I had a sigmoidoscopy, colonoscopy and barium swallow. (this is when I was initially diagnosed)

In 2005 I had a colonoscopy, and this is when my doc admitted he wasn't 100% sure whether I have UC or Crohns.

That's it for tests - I haven't had a CAT scan or anything like that.

I tend to have a lot of general abdominal pain all over. Occasionally I get bloody stool (like right now), but the weird thing is that I don't seem to have a lot of the multiple trips to the bathroom that seems to be classic for UC. It's almost the opposite for me...like I'm constipated but when there is something it's yucky!

What is throat cobbling?
Ulcerative Colitis, dx in 1998 at age 18
Allergic to Sulfasalzine
4 Apriso pills 1x daily
Daily Multivitamin
Living with gallstones, but no surgery unless they get active again
Slightly anemic, so I also take an iron supplement daily

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 14165
   Posted 8/20/2010 5:59 PM (GMT -7)   
It's little bumps in the back of the throat. I think it is from nasal drip but can also happen with chrons. I have a lot of trips to the bathroom sad   It sounds like we both need further testing. I doubt the UC turned into Chrons, we just never had enough tests to get a 100% diagnosis either way. My doctor said they would treat it the same way regardless of whether it is Chrons or UC - unless you were needing surgery or having a really hard time getting into remission, it's not a necessity that you know which you're dealing with.
March 2007: Diagnosed with Mild Proctitis - Canasa as needed.
August 2008 - December 2008: FLARE & Anemic - Started Asacol!!
January 2009 - December 2009: REMISSION!! Asacol (9) + Canasa 2x Daily
December 2009 - January 2010: FLARE!! Asacol + Prednisone + Canasa
February 2010 - April 2010: Colazal + Prednisone + Canasa
May 2010 - June 2010: Lialda + Cort Enema + Prednisone : Colonoscopy: Mild / Moderate Active Pancolitis
CURRENT: DOING OK! Prednisone, 6mp, klonopin, Canasa + Vitamin D

tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 8/20/2010 8:52 PM (GMT -7)   
Notsosicklygirl, I think that it may be time for you to get a second opinion from another G.I. because although U.C. and Crohn's disease are both IBD they are not treated the same. Yes, there are some standard medications like prednisone but Crohn's diseease is throughout the whole G.I. tract and there are medications that are used for that reason. Crohn's disease also has a higher chance of have external manifestations of the disease like fistula, ulcers, arthritis, foliculitis, sinus ulcers, eye inflammation, skin nodules, ect..... Thus making it very important to know which one you have and which medication you should be on. More and more you are seeing some of the medications like Remicade and humira being used to treat U.C. but still your doctor should be vigilent in finding out which one you have.
Kelli_C, don't feel bad about being misdiagnosed with U.C. when you have had Crohn's disease all along. If you have more Crohn's Colitis, it would be mainly in your colon and down which would look just like U.C. Many people first diagnosed with U.C. have their colon completely removed only to find out that the that they had Crohn's disease all along when ulcerations show up in the small bowel. Atleast you were able to find it before then.

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 8/20/2010 9:16 PM (GMT -7)   
I was also diagnosed as UC first. Then I started getting fissures, abscesses and finally a fistula. When they went back in for another scope about a year later, they saw the skip pattern ulceration and deeper sores than UC generally has.
1 fistula with two tracts, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia. Dx Osteoporosis 10/08 started Forteo 1/27/09

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 14165
   Posted 8/20/2010 10:13 PM (GMT -7)   
If my condition were well managed I wouldn't care about the diagnosis. Now I am at the point where things have been up and down for so long that I am feeling frustrated. I think my GI thought something would have helped by now but it hasn't. I think it's always smart to get a 2nd opinion (maybe a 3rd), I had another GI for a while and she agreed that I have UC. I just don't see how they could possibly determine that with the limited testing I've had done.
March 2007: Diagnosed with Mild Proctitis - Canasa as needed.
August 2008 - December 2008: FLARE & Anemic - Started Asacol!!
January 2009 - December 2009: REMISSION!! Asacol (9) + Canasa 2x Daily
December 2009 - January 2010: FLARE!! Asacol + Prednisone + Canasa
February 2010 - April 2010: Colazal + Prednisone + Canasa
May 2010 - June 2010: Lialda + Cort Enema + Prednisone : Colonoscopy: Mild / Moderate Active Pancolitis
CURRENT: DOING OK! Prednisone, 6mp, klonopin, Canasa + Vitamin D

tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 8/21/2010 12:17 AM (GMT -7)   
It is happening more and more that we are seeing the misdiagnosis. I have a very good friend who was diagnosed with U.C. when he was in 8th grade. It was terrible for him because he was the start athlete and the high school coaches were already chomping at the bit because of how great of quarterback he was. He ended up going on steroids and spending all of his 9th grade year at home trying to get it under control. Eventually they removed his colon and in a second surgery gave him a j pouch. This poor kid suffered so badly and was told that although he could not play football again he was now going to be U.C. free because his colon and rectum were now gone. Now he is nearly 21 years old and sure enough he has started having the cramps, bleeding, and D. again. They are going to now test him for Crohn's disease and feel that he had been misdiagnosed. It seems like that most people who have their diagnosis changed to Crohn's disease are typically diagnosed with U.C. when they are children or teenagers. Then just like the majority of people who have crohn's, when they reach their mid 20's they start flaring and are rediagnosed.
I was push for a second opinion and further testing for sure if they have not decided what disease you have. It is not fair to you to not be able to know directly what is happening. Notsosicklygirl, I can see that the majority of your flares are rather short(the dates in your signature) compared to most but they are still happening quite frequently. You are not on any maintenance medications for crohn's disease and if you have it you need to be on something. Prednisone is not a long term maintenance med and you should not have to be on it forever. There are so many tests that can easily be done to se if you do have the disease in the upper G.I. tract. You have not even had an endoscopy to look at the stomach or a pill cam test to look at the whole G.I. tract. That is just not good medical care when you G.I. does not look at the whole G.I. tract and just stops instead of finding out what the problem is. I would be calling another G.I. tomorrow to set up an appointment for second opinion. Just because you get a second opinion, it doesn't mean that you have to change G.I.s. If you G.I. gets upset about you wanting another opinion, then it is better that you get away from them because they are not very professional and are only caring about their monetary bottom line.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/21/2010 7:35 AM (GMT -7)   
This is a very common occurence. You should ask to have biopsies taken, they will show if its UC or Crohns. With your description of skipped patterns that points more to Crohns than UC. And IBD it must be treated at all times, so if I were you, I think I would get a second opinion. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 8/21/2010 9:53 AM (GMT -7)   
I went to two different hospitals and one called it ulcerative colitis (based on c-scope, their pathologists were wishy washy), and one called it Crohn's (based on path slides from a so-called world expert pathologist for IBD). I took asacol for a while thinking it was UC and that worked for a bit then I flared up again and they did a c-scope and found skip lesions (inflammation in the terminal ileum and small intestine and right colon). They also found granuloma, so diagnosis was pegged from that point on as Crohn's. Of note, prometheus tests were negative for IBD. I think it's important to get the right diagnosis as you can be taking an ineffective drug. Asacol is pH balanced and is only released in the colon, that's why I think I flared up again. It wasn't the right med for me (should have been on azulfidine). It's also important for colon cancer screening purposes and to know if you can get cured with a colectomy (which is only the case with UC). Keep in mind that inflammation in the terminal ileum can occur with UC if there is backwash ileitis, but I think you would have to have pancolitis for this to happen.
Crohn's diagnosed 6/08
Organic SCD since 4/09
Remicade from 6/09 to 4/10
Low-dose naltrexone since 7/5/10
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 8/21/2010 10:43 AM (GMT -7)   
Crohn's colitis (CD affecting the colon) is actually treated the very same way (with meds and such) as UC is treated...there are 5 subtypes of crohn's (5 different main areas that CD is most common) {see this link} http://www.ehealthmd.com/library/crohnsdisease/CD_types.html
 
And although CD can affect any part of the GI tract from mouth to anus and UC is limited to the colon/rectom, the very same extraintestinal manifestations can occur in either CD or UC, especially skin issues (skin issues are more common for those with crohn's colitis (when the colon is involved) and therefore makes skin issues a more constant for UCers.
 
CD is patchy (or skipped) patterns of inflammation (a good GI can detect the difference) with healthy tissues in between inflamed tissue...UC will have the entire area inflamed with no skipped/patchy areas. 
 
Patients are often misDX, this never happend to me as I also have the perianal crohn's skin tags which are a dead give-away of crohn's...I have crohn's colitis, and when I first got sick it was affecting my anus with the tags, my rectom (proctitis) my colon, and my TI so crohn's can also affect more than one area at a time, and although my CD has remained constant the entire 19 yrs I've had it, in the colon and anus, it has stayed clear of the TI and comes and goes in the rectom.  Therefore I definitely still have crohn's and it has not "changed" into UC, as my pattern of inflammation is that of CD and not UC, plus the perianal crohn's skin tags.
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 8/21/2010 11:11 AM (GMT -7)   
My husband was originally diagnosed with Ulcerative Proctitis (UC that was contained to the rectum). This was in April 2003. He was just on Canasa suppositories and was fine until March 2008 - he had a flare up once during that time period, and a short course of steroids set him back right. The doc had only done sigmoidoscopes, and said he saw inflammation in the rectum, and not further up the colon. Biopsies of the rectum indicated inflammation indicative of ulcerative colitis. Now I wish he'd done a full colonoscopy.

In March 2008, even though my husband was not an any antibiotics, he started flaring I think, and he also got a c-diff infection, the combination of which landed him in the hospital. Long story short, they finally did a full colonoscopy and found very severe inflammation starting at the transverse colon - so bad that the doc was worried that he would perforate the colon if he went further. Biopsies showed that it was indeed Crohn's disease and not ulcerative colitis. He was started on Remicade and high doses of steroids.

Misdiagnosis of Crohn's as UC is quite common. So, definitely get all the tests. And Crohn's can be survived, so don't let the diagnosis daunt you too much. Since my husband has been on remicade, we've had a few ups and downs, but life has been good. In fact, in some ways, I appreciate the life we have so much more.

Good luck. I hope you get relief soon.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission

tooth
Regular Member


Date Joined Jun 2010
Total Posts : 337
   Posted 8/21/2010 2:15 PM (GMT -7)   
I was misdiagnosed with UC on my first colonoscopy while waiting for biopsy results to come back. My entire colon was ulcerated and I had numerous strictures in the colon. Since I didn't have any skip lesion evident, they thought it was UC. A biopsy taken that day later changed the diagnosis to Crohn's colitis. A scope I had about 2 years later confirmed Crohn's since it was living in my colon and my terminal ileum.

So I think it's pretty common to be misdiagnosed....
Diagnosed 2002 at 18. Remission for about 7 years. Getting back into the swing of things at 26.

100mg Imuran, 750mg Balsalazide 3x day, Flagyl (death pills. yuck)

Flaring...

Had to abandon SCD...for now.

kelli_C
Regular Member


Date Joined Jul 2009
Total Posts : 130
   Posted 8/21/2010 4:22 PM (GMT -7)   
So, when I go into the GI's next monday (or when i get my next screening colonoscopy in early 2011), what sort of specific tests should I ask about? I caught that I should look for granulomas on biopsy, the various skin issues (tags, fistulas, etc.) and a Prometheus test (not familiar). Anything else I should ask my doc about?

Thanks for all the responses!!!
Ulcerative Colitis, dx in 1998 at age 18
Allergic to Sulfasalzine
4 Apriso pills 1x daily
Daily Multivitamin
Living with gallstones, but no surgery unless they get active again
Slightly anemic, so I also take an iron supplement daily

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8375
   Posted 8/22/2010 8:09 AM (GMT -7)   
Kelli, I just posted to you over at the UC board, weird. Anyway, my first diagnosis was proctitis (UC) and then 2 years later I had a full colonoscopy and the GI found inflammation in the cecum. He was still sticking with the UC diagnosis, but changed my meds a bit. Two years later I was still complaining about diarrhea and I went from Asacol to Pentasa, which changed everything. Two years after that I had a stricture in the esophagus and I think my DR and I are on the Crohn's page for good. It took a lot of time for me to get through this diagnostic story partly because I think bowel issues are notoriously hard to diagnose and partly because during this time I had 2 children and breastfed both of them.

I hope that you can resolve your current issues quickly.
*******************
48 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (6g/day), Sulfazine (1.5 g/day), Prevacid, vit. D (20K iu), flax seed oil (2 tsp/day), mesalamine enema as needed.

mj7575
New Member


Date Joined Mar 2008
Total Posts : 6
   Posted 8/25/2010 6:24 PM (GMT -7)   
I was also diagnosed in 2007 with ulcerative colitis and about 8 months ago was diagnosed with Crohn's colitis. My last colonoscopy showed that it skipped a section and when he did the biopsy they found a granuloma. My doc said it has become more and more commonly diagnosed. He also mentioned that it can be hard to keep those with this combo to stay in remission for long periods of time. I have tried Asacol, prednisone, remicade infusions and now am on azathioprine and colazal. We'll see how it works!
Diagnosed pancolitis May 2007

Currently taking Asacol, and mvi

FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 8/25/2010 6:46 PM (GMT -7)   
After about two decades of uc they changed me to crohns based on the shape and depth of the ulcerations. I did not see any difference but i have been a lot sicker since the new diagnosis. Not necessarily meaning that it has anything to do with the new diagnosis or not????
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