Guest guest Posted February 12, 2010 Report Share Posted February 12, 2010 I was first diagnosed with UC. Then one day, my GI was talking about my crohn's, and I was like, " Whoa, back up the truck here! " He then told me that after conferring with some other GIs, he changed my diagnosis, but that it didn't matter, because treatment was the same. Um...yeah...not entirely...plus, he still should have mentioned the change. Anyway, here's a little chart you can look at that outlines the differences between the 2 diseases. Did your colonoscopy show continuous inflammation in your colon, or was the inflammation in patches that skipped around your digestive tract? http://colitis.emedtv.com/ulcerative-colitis/ulcerative-colitis-versus-crohn%27s\ -disease.html Holly Crohn's SCD 12/01/08 > > Hi, > > I am new to the group. I started the diet about a month and a half ago. My question is whether it is normal for the doctors not to be able to tell you if it is crohn's or colitis? I have had a ct scan, colonoscopy, endoscopy and more blood and stool test than I can count. I told my doctor I was not going to take any more steroids or start remicaide unless they could tell me what the actual diagnosis was. I told them I was going to start scd instead. I have continued to take llialda. I have been getting progressively better on scd. I tend to have a few good days (healthwise) followed by a few bad days. The number of good days has steadily increased. I am not doubting that scd is working, but I am wondering if it is important to have a diagnosis or if it is normal for doctors not to be able to tell you which, crohn's or colitis? > > > Stacey > scd-almost 2 months > crohn's or colitis for about 10 years but didn't have health insurance until recently so started seeking treatment this October. > Llialda > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2010 Report Share Posted February 13, 2010 Hey Stacey- the link Holly forwarded is great! I thought I'd add my 2 cents... I do think it is common to not be able to have a firm diagnosis either way. In my case, I was diagnosed with UC. Then 3 years later I had a very typical Crohn's flare in my upper intestines. However, in the 15 since then, ever flare/symptom/problem I've had has been completely typical to UC. So go figure... the body works in mysterious ways. I still walk around with my Crohn's diagnosis even though it's pretty much UC Bottom line: don't get discouraged by the labels. The important thing is that you found SCD so early on. I am jealous! Keep it up. -Joanna SCD 9/2009, Crohn's 1992 > > > > Hi, > > > > I am new to the group. I started the diet about a month and a half ago. My question is whether it is normal for the doctors not to be able to tell you if it is crohn's or colitis? I have had a ct scan, colonoscopy, endoscopy and more blood and stool test than I can count. I told my doctor I was not going to take any more steroids or start remicaide unless they could tell me what the actual diagnosis was. I told them I was going to start scd instead. I have continued to take llialda. I have been getting progressively better on scd. I tend to have a few good days (healthwise) followed by a few bad days. The number of good days has steadily increased. I am not doubting that scd is working, but I am wondering if it is important to have a diagnosis or if it is normal for doctors not to be able to tell you which, crohn's or colitis? > > > > > > Stacey > > scd-almost 2 months > > crohn's or colitis for about 10 years but didn't have health insurance until recently so started seeking treatment this October. > > Llialda > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2010 Report Share Posted February 13, 2010 > Hey Stacey- the link Holly forwarded is great! I thought I'd add my 2 cents... I do think it is common to not be able to have a firm diagnosis either way. In my case, I was diagnosed with UC. Then 3 years later I had a very typical Crohn's flare in my upper intestines. However, in the 15 since then, ever flare/symptom/problem I've had has been completely typical to UC. So go figure... the body works in mysterious ways. I still walk around with my Crohn's diagnosis even though it's pretty much UC It's not the body working in mysterious ways - it's that science doesn't understand the condition correctly yet, so that the labels are not entirely correct, because they don't understand how the disease works. That's also why there is as yet no medication that can handle this disease definitively. Mara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2010 Report Share Posted February 13, 2010 > I was first dx'd with crohn's colitis. After a Prometheus test which> is a hand drawn blood test...What is a "hand-drawn blood test"? Aren't all blood tests "hand-drawn"? (Except the finger-prick kind, but I haven't had one of those in years.)n ______________________________A funny, touching gift book for cat lovers. Signed copies, free shipping (U.S., reduced elsewhere): Confessions of a Cataholic: My Life With the 10 Cats Who Caused My Addiction by n Van Til www.wordpowerpublishing.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2010 Report Share Posted February 13, 2010 Thanks everyone, it's just helpful to know that other people had similar experiences. i guess i was just wanting some peace of mind, but i'm finding out in scd and life in general things are not so clear cut. > > > Hey Stacey- the link Holly forwarded is great! I thought I'd add my 2 cents... I do think it is common to not be able to have a firm diagnosis either way. In my case, I was diagnosed with UC. Then 3 years later I had a very typical Crohn's flare in my upper intestines. However, in the 15 since then, ever flare/symptom/problem I've had has been completely typical to UC. So go figure... the body works in mysterious ways. I still walk around with my Crohn's diagnosis even though it's pretty much UC > > It's not the body working in mysterious ways - it's that science doesn't understand the condition > correctly yet, so that the labels are not entirely correct, because they don't understand how the > disease works. > > That's also why there is as yet no medication that can handle this disease definitively. > > Mara > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2010 Report Share Posted February 13, 2010 I did not present in the " typical " way for either and after a second opinion from the pathologist, my doc decided it was " mild UC " . I don't think the difference is very clear sometimes. Here is Elaine's take on it: http://www.breakingtheviciouscycle.info/knowledge_base/kb/prometheus_test.htm They don't always know for certain. PJ > > > > > Hey Stacey- the link Holly forwarded is great! I thought I'd add my 2 cents... I do think it is common to not be able to have a firm diagnosis either way. In my case, I was diagnosed with UC. Then 3 years later I had a very typical Crohn's flare in my upper intestines. However, in the 15 since then, ever flare/symptom/problem I've had has been completely typical to UC. So go figure... the body works in mysterious ways. I still walk around with my Crohn's diagnosis even though it's pretty much UC > > > > It's not the body working in mysterious ways - it's that science doesn't understand the condition > > correctly yet, so that the labels are not entirely correct, because they don't understand how the > > disease works. > > > > That's also why there is as yet no medication that can handle this disease definitively. > > > > Mara > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2010 Report Share Posted February 13, 2010 The first time I walked in a gastro doc's office, he took one look and said celiac ;-). Blondish red hair/blue eyes I guess. I'm still not 100% certain on that. OT comment there. It is hard to tell I think. > > I did not present in the " typical " way for either and after a second opinion > from the pathologist, my doc decided it was " mild UC " . I don't think the > difference is very clear sometimes. > > Here is Elaine's take on it: > > http://www.breakingtheviciouscycle.info/knowledge_base/kb/prometheus_test.htm > > They don't always know for certain. > > PJ > > >> > >> > > Hey Stacey- the link Holly forwarded is great! I thought I'd add my 2 >> > > cents... I do think it is common to not be able to have a firm >> > > diagnosis either way. In my case, I was diagnosed with UC. Then 3 >> > > years later I had a very typical Crohn's flare in my upper intestines. >> > > However, in the 15 since then, ever flare/symptom/problem I've had has >> > > been completely typical to UC. So go figure... the body works in >> > > mysterious ways. I still walk around with my Crohn's diagnosis even >> > > though it's pretty much UC >> > >> > It's not the body working in mysterious ways - it's that science doesn't >> > understand the condition >> > correctly yet, so that the labels are not entirely correct, because they >> > don't understand how the >> > disease works. >> > >> > That's also why there is as yet no medication that can handle this >> > disease definitively. >> > >> > Mara >> > >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2010 Report Share Posted February 14, 2010 i'm celiac and 2 docs said crohns on top of that -and 3rd said intestinal corrosion on top - but didn't want to label me crohns - by the time he scoped me for himself ,9 months on scd - no corrosion to be seen eileen 2 years scd > >> > > >> > > Hey Stacey- the link Holly forwarded is great! I thought I'd add my 2 > >> > > cents... I do think it is common to not be able to have a firm > >> > > diagnosis either way. In my case, I was diagnosed with UC. Then 3 > >> > > years later I had a very typical Crohn's flare in my upper intestines. > >> > > However, in the 15 since then, ever flare/symptom/problem I've had has > >> > > been completely typical to UC. So go figure... the body works in > >> > > mysterious ways. I still walk around with my Crohn's diagnosis even > >> > > though it's pretty much UC > >> > > >> > It's not the body working in mysterious ways - it's that science doesn't > >> > understand the condition > >> > correctly yet, so that the labels are not entirely correct, because they > >> > don't understand how the > >> > disease works. > >> > > >> > That's also why there is as yet no medication that can handle this > >> > disease definitively. > >> > > >> > Mara > >> > > >> > > > > > > > Quote Link to comment Share on other sites More sharing options...
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