Crohn's Disease Forum » Ulcerative Colitis Forum » UC or Crohns? GI says our daughter may have UC instead of CRohns


06-24-2013, 01:19 AM   #1
Hope345
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UC or Crohns? GI says our daughter may have UC instead of CRohns

Our daughter recently had a blood test done that indicated she may have UC instead of Crohns. I found it a month later after we finally were sent the results. I had to call and ask them myself if her diagnosis had been changed. The test is based on genetics but not 100 percent accurate. I am not sure what this means for her, so I have more research to do

any input is greatly appreciated.
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Daughter (age 17) diagnosed with Crohns Colitis/UC 1/2012 Mod/severe changed to U.C.: 11/7/2014 anemia:blood transfusion current: Flare, weaning from Prednisone, still bloating: Meds ,Pentesa: 2000mg twice daily, Vegan diet, mesalamine enemas .Previous: mercaptopurine, Remicade (13 treatments), Imuran, prednisone ), Flagyl, iron infusions, cortifoam,
Continue to be hopeful
Daughter: age 21, undiagnosed: GI issues
06-24-2013, 05:45 AM   #2
sickinlk
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ive never had this test done personally but it makes me curious. I often think that the one advantage of having uc is that it can be cured. the cure being removing the colon. its drastic and a major surgery but can mean getting a normal life back and stopping all those horrible meds and having no side effects.
I was diagnosed through a colonoscopy and biopsies. I pray they got it right.
ju
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Julie 36 y/o female.
dx'd with UC in june 2011.
intolerant to 5 asa's caused pancreatitis!!
steroid resistant
on remicade since sep'12. doubled the dose in june'13
May'13 added 6-mp. on 75mg.
CAme off remicade April '15, hoping to get back on it asap.
06-24-2013, 10:04 AM   #3
Hope345
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Thanks for the reply. We are very blessed right now because she is symptom free. Our daughter was diagnosed with Crohns with the colonoscopy and biopsy too. It was very surprising when this result came back: IBD SGI Diagnostic test as being consistent with IBD, ulcerative Colitis.
How are you doing with your UC at this time? Did you have your colon removed or is that a possibility? thanks again
06-24-2013, 04:13 PM   #4
Cross-stitch gal
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Sometimes people can be misdiagnosed like I was. For awhile, I was told that I had Crohn's as well. But, I got a new doctor this year that did a test on me and told me that it's not Crohn's but, Ulcerative Proctitis and Ulcerative Colitis.

I'm not sure about being diagnosed by blood tests. I believe he did a flexible sig on me and that's where he found mine. I do hope that you can get/keep her more healthy now though with this knowledge. Take care.
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06-24-2013, 11:00 PM   #5
Hope345
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My next question for you wonderful people with UC is this? Can UC be in patches like Crohns? That was the main reason our GI said she had Crohns. It sure seems like all of her other symptoms fit UC. We have so much to relearn.... thanks everyone
06-25-2013, 02:08 AM   #6
Cross-stitch gal
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This might be a little more than you're looking for. But, this is what I found. I hope this helps some.

www.gidoctors.com/Colitis/Colitis.html

http://www.seattlechildrens.org/medi...ative-colitis/
06-25-2013, 05:45 AM   #7
sickinlk
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that's a good site cross stitch gal. very informative.
Hope345, Uc does not present in patches. its starts at the rectum and continues upwards through the large bowel. when I watched my colonoscopy last july I had left sided uc and proctitis. these refer to the areas that are inflamed.
the scope showed thick inflamed bowel walls with bloody ulcers spotted here and there. the whole area was secreting mucous too so it wasn't pleasant to look at. then at the transverse colon the bowel looked healthy. in crohns these patches can show up anywhere and wouldn't be continuous from the rectum upwards.
I have been diagnosed 2 years this month and I must say im still learning. I still have my bowel but we're talking about surgery. lots more to learn.
ju
06-25-2013, 10:01 AM   #8
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Thank you cross-stitch Gal and sickinlk.
I read all the info-thanks for the link csg. She seems to fit the criteria for UC, except for the fact that she had inflammation in the appendix area, a clear area, inflammation on the transverse colon, a small clear area and then again in the rectum. That means it cannot be UC, right?

I just sent a note to her GI with the same question. It seems the GI's have a hard time figuring all this out as well. Each person is so different with their symptoms. So far B, has never had diarrhea. Her most prevalent symptoms were lots of bleeding, mucous and pain. She was always anemic.

Sickinlk: I was wondering if you are also using probiotics? We started B on acidophilus as soon as her symptoms were under control. With all the theories on bacteria, it seemed to fit. I just ordered Milk Kefir grains too. We will slowly introduce the kefir into her body which will contain billions of other types of good organisms that will help to keep her colon flora balanced. What are your thoughts on this?
06-25-2013, 10:42 AM   #9
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Hope345, did they find granulomas with her biopsy? Granulomas can be present with CD but not with UC. You won't always find granulomas with CD but when you do it sort of ensures the dx of CD.

Granulomas are not specific to Crohn's disease, but if seen are helpful in distinguishing between ulcerative colitis and Crohn's disease. But when a granuloma is found, and the patient has symptoms consistent with Crohn's disease, it can help a physician make a diagnosis of Crohn's disease. Granulomas are not seen on intestinal or colonic biopsies of patients with ulcerative colitis
Also, since UC only affects the mucosal layer and CD is transmural(goes all the way through the bowel) then when biopsied these patterns will show in the biopsy.

This is a great paper on it, I hope it helps and hope you get some answers soon:

http://www.elsevierhealth.co.uk/medi...0443071218.pdf
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06-25-2013, 02:23 PM   #10
Hope345
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Clash,

I just looked back at her original colonoscopy biopsies and it was noted that there were no granulomas seen.
I also read in the paper you recommended:

UC
UC starts from the rectum, spreads proximally and in continuity, involving a variable length of the colon.
Pancolitis normally stops abruptly at the ileocecal valve,
but in some cases a limited distal ileitis, called backwash
ileitis, is observed.These ileal lesions are in continuity
with colonic lesions and characterized microscopically
by diffuse inflammatory lesions with regular shortening
of the villi. In patients with limited UC, the transition
from diseased to normal mucosa is usually gradual and
only occasionally abrupt. Atypical presentations can be
observed. Some patients have left-sided involvement of
the colon and cecal (cecal patch) or appendiceal
involvement.The affected sites are separated by
normal mucosa.
Diffuse duodenitis and extensive
involvement of the upper small bowel can occur in
severely ill UC patients.

Thank you. This shows that she can have patches of normal looking mucosa, especially when the appendix area is involved. It would seem she probably has UC, instead of Crohns. GI just messaged me back and said that the treatment will be the same for both right now.

thank you all for your advice and info.
06-25-2013, 02:27 PM   #11
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I read the paper as well but I think you would have to also take into account whether the inflammation was transmural(from top layer of mucosa as well as involving deeper layers of the bowel wall), did the biopsy mention that? Or was just the first layer as it is with UC.

I agree the treatment can be the same so there so certainty is not needed for treatment.
06-25-2013, 02:43 PM   #12
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In the copy of the limited results sent to me by her GI, the description was Chronic colitis with moderate activity. and noted :
Comment: Chronic inflammatory changes are present discontinuously
throughout the colon (specimen E, H, and I), consistent with inflammatory
bowel disease. No granulomas are identified.

It would seem she is a bit atypical for either disease. But as we all know, each person is so different with these diseases.

It did not note whether her IBD went through more than just the top layer.

Does your son have Crohns or UC?
06-26-2013, 08:12 AM   #13
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C has Crohn's, located in his terminal ileum at his ICV.

Did you get an email back from the GI? I hope you can find some answers but more importantly I hope your daughter gets into to remission quickly!!
06-26-2013, 08:57 AM   #14
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Fortunately, our daughter is in remission about 3 months now. Did I use the word remission? Wow, that felt good. We were afraid to say the word, until her GI used it last month.

This test was done at her last Remicade treatment, but we just got the result this week. Our Gi originally said that the treatment is the same either way, but prognosis for UC is a bit better.

Either way we are doing what is best for her right now, so that is good. I will talk more to her doctor about it next month at the appt right before the Remicade treatment. I am just researching everything myself right now, so I know what questions to ask. To be honest, I had not even looked to see the difference between the two (Crohns and UC) and did not know much of anything about UC. I may have wondered if this what she had myself if I had looked.
06-26-2013, 12:59 PM   #15
sickinlk
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probiotics.
well I know lots of people use them and swear by them but not me personally unless im on an antibiotic course. antibiotics kill all the good bacteria in the gut so it makes sense to replace them. other than that I don't normally take them. im sure they will help with symptoms like bloating etc. let us know how it goes.
ju
07-01-2013, 12:38 AM   #16
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Update: I just talked (emailed) a doctor in Australia and he still thinks our daughter has Crohns given the colonoscopy results back in 1/2012.

He said the Promethius testing is not really regarded that well with all GI's throughout the world.

Just taking all the information I can, it is still very important to me and will be to her down the road when she is monitoring it herself.

thanks everyone. you are all so helpful.
07-01-2013, 03:51 AM   #17
sickinlk
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what a confusing time. hope I hope you get some answers soon.
ju
07-01-2013, 08:41 AM   #18
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I'm sorry you're having this difficulty. I hope you get clear answers for her.
07-05-2013, 11:03 AM   #19
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Hi hope!

It's now possible through DNA sequencing machines to explore the entire genome of a person. It allows to detect specific mutations on genes known to induce certain diseases. There is a margin for error in the tests.

The test is not 100% accurate because even if the results reveal the presence of specific markers (in this case related to UC) it doesn't mean those genes are responsible for your daughter's condition. For example, if you got yourself tested and they found markers for a mutated gene known to cause Alzheimer, it doesn't mean you will actually get Alzheimer.

From what I gathered, the only way to differentiate UC vs Crohn's is through histology, aka studying the cells under the microscope. The doc takes a piece of the bowel during a colonoscopy and sends the biopsy to the lab. They stain it and look at it under a scope. That way they can tell whether the colitis is acute or chronic, active or inactive, etc. The cellular activity is different for UC and Crohn's and a pathologist will be able to tell.

As for your other question, both UC and Crohn's can evolve in patches. The biggest difference between UC and Crohn's is that UC will never touch anything outside the intestine, whereas Crohn's can involve the entire GI tract, from the mouth all the way to the anus. This gives UC patients an ultimate option for a "cure": they have can their bowel removed and get rid of the disease altogether, giving up all the meds and treatments. As sickinlk said, there are some people who have a bad case and for whom a return to normal life is worth any price. Crohn's patients do not have that last resort.

Aside from that, biologically speaking, UC and Crohn's are extremely similar in how they work, and how they are treated.
07-07-2013, 08:32 AM   #20
Hope345
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FrancisK7:

thank you so much for the info.
You have certainly done your research.
Now I am wondering if there is any more histology from the biopsies that should be available for me to read. they did several biopsies.

It has been a tough road for our daughter and the many who face IBD everyday.
With all of the testing, hopefully they will find a cure soon

take care and thanks again
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