UC -turned into Crohns?

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.

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   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.

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.

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.

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.

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

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!!!

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!