Cat-a-Tonic
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- May 5, 2010
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Bear with me, this will probably start out small and we'll edit and add to it as we think of more. Allie and Star, feel free to edit this post and add more. Once we feel this has enough info, we'll sticky it.
If you are new to the forum and have clicked on this thread, you're probably undiagnosed and having worrying symptoms, and you are wondering if you might have an IBD such as Crohn's or Colitis. Here are some FAQs which will hopefully help you navigate the road to diagnosis a little more smoothly.
Q: Do I have an IBD?
A: Only your doctor can tell you for sure. You'll need to undergo tests, most likely including blood work, colonoscopy, upper endoscopy, and scans. Unfortunately, IBD cannot be diagnosed based on symptoms alone, you must go through diagnostic testing first.
Q: I'm not sure if I have IBS (irritable bowel syndrome) or IBD (inflammatory bowel disease). What's the difference between IBS and IBD?
A: IBS is a brain-gut disorder. Essentially, the signals between your brain and gut get messed up somehow, which ends up with the brain erroneously signaling the gut to cramp, causing symptoms such as pain and diarrhea. IBD is inflammation of the bowels, also causing symptoms such as pain and diarrhea. Other symptoms of IBD that are NOT part of IBS can include: blood in the stool, nocturnal diarrhea, weight loss, fever. IBD can also frequently incur extra-intestinal symptoms such as joint pains, headaches, eye inflammation, and skin rashes.
Q: What kind of a doctor should I see if I think I have IBD?
A: Your primary care doctor/GP should be able to refer you to a gastroenterologist, or GI. A GI is a specialist dealing with illnesses of the digestive system. If you feel that you may have an IBD such as Crohn's, you might want to seek out a GI who specializes in IBD/Crohn's.
Q: I've had a lot of tests but still have no diagnosis. Will I ever get diagnosed?
A: Unfortunately, IBDs such as Crohn's are sometimes very difficult to diagnose. Crohn's has a "skip pattern" which means it can manifest in patches between healthy areas of intestine. Crohn's can also manifest anywhere from mouth to anus and is sometimes difficult to pinpoint especially if it is in the small intestine. Sometimes, unfortunately, it can take years to get a proper diagnosis.
Q: I've had a lot of tests and have only gotten normal test results. Is it still possible that I have an IBD?
A: Absolutely yes, see above. Crohn's is sometimes very tricky to diagnose. It's also possible that you have a different illness that is causing IBD-like symptoms. Certain auto-immune illness such as Lupus or Addison's disease can cause symptoms such as abdominal pain, diarrhea, and nausea.
Q: I do not have diarrhea as a symptom. My doctor says that I cannot have an IBD if I do not have diarrhea. Is this true?
A: Absolutely not. With IBDs such as Crohn's and Colitis, you may experience diarrhea, constipation, or maybe even normal stools. If you do not experience diarrhea as a symptom, it does not mean that you do not have IBD. (And you may want to get a second opinion from a more knowledgeable doctor.)
Q: My CRP and other bloodwork is normal. Does this mean I do not have an IBD?
A: No. You can have normal bloodwork and still have an IBD. Approximately 10% of people with IBDs will have bloodwork in the normal ranges even when they are badly inflamed and very ill. Generally speaking, bloodwork is not a super reliable indicator. It can be a good tool, but it can also sometimes be inaccurate of what's really going on inside your body.
Q: My doctor has basically given up on me and says he cannot help me any further. What can I do?
A: If this is your primary care doctor, you should find a new one. If this is your GI, ask your primary care doctor for a referral to a new GI. Not all doctors are created equally, and some just run out of ideas or cannot be bothered to deal with tricky cases. A second opinion is sometimes all that you can do.
Q: What are the best tests to have to get a diagnosis?
A: All of the diagnostic tests are different and no one is necessarily "better" than any other. Having said that, sometimes blood work can be unreliable. Colonoscopy and upper endoscopy are good because they can take biopsies, but they cannot see most of the small intestine. Pill cam is good because it can see the entirety of the small bowel, but it cannot take biopsies. MRIs tend to have better image quality than CT scans.
Q: I've been ill for a long time with no diagnosis. Does it ever get better?
A: It can, most definitely. I (Cat-a-Tonic) can tell you first-hand that it can get better. Even if you do not get a diagnosis, if your doctor feels that IBD is likely then he or she may try you on a trial of IBD medication such as prednisone, Entocort, or Pentasa. Personally speaking, Entocort has put my undiagnosed illness into remission and I now have many more good days than bad ones. It is possible.
Q: I feel so alone. Nobody understands what it's like to be ill and undiagnosed. What can I do?
A: You've come to the right place! There are many of us in the Undiagnosed Club who are going through something very similar, and we are here to support you and each other. Many of us have experienced family members or friends who are not able to understand what it is like to live every day with an illness like this and no diagnosis. If this describes you, you may want to have your unsupportive loved ones read the Spoon Theory, or describe your illness to them in a similar way. Here is a link to the Spoon Theory:
http://www.butyoudontlooksick.com/a...poon-theory-written-by-christine-miserandino/
Q: As an undiagnosed person, do I always have to post in the undiagnosed club?
A: Not at all. We welcome all questions and try to help where we can, but if you feel we are not the best equipped to answer, go ahead and post elsewhere in the forum as you feel appropriate. For example if you need to post about specific issues such as diet, or would like the advice of diagnosed members, please feel free to post in other parts of the forum if you wish to do so.
If you are new to the forum and have clicked on this thread, you're probably undiagnosed and having worrying symptoms, and you are wondering if you might have an IBD such as Crohn's or Colitis. Here are some FAQs which will hopefully help you navigate the road to diagnosis a little more smoothly.
Q: Do I have an IBD?
A: Only your doctor can tell you for sure. You'll need to undergo tests, most likely including blood work, colonoscopy, upper endoscopy, and scans. Unfortunately, IBD cannot be diagnosed based on symptoms alone, you must go through diagnostic testing first.
Q: I'm not sure if I have IBS (irritable bowel syndrome) or IBD (inflammatory bowel disease). What's the difference between IBS and IBD?
A: IBS is a brain-gut disorder. Essentially, the signals between your brain and gut get messed up somehow, which ends up with the brain erroneously signaling the gut to cramp, causing symptoms such as pain and diarrhea. IBD is inflammation of the bowels, also causing symptoms such as pain and diarrhea. Other symptoms of IBD that are NOT part of IBS can include: blood in the stool, nocturnal diarrhea, weight loss, fever. IBD can also frequently incur extra-intestinal symptoms such as joint pains, headaches, eye inflammation, and skin rashes.
Q: What kind of a doctor should I see if I think I have IBD?
A: Your primary care doctor/GP should be able to refer you to a gastroenterologist, or GI. A GI is a specialist dealing with illnesses of the digestive system. If you feel that you may have an IBD such as Crohn's, you might want to seek out a GI who specializes in IBD/Crohn's.
Q: I've had a lot of tests but still have no diagnosis. Will I ever get diagnosed?
A: Unfortunately, IBDs such as Crohn's are sometimes very difficult to diagnose. Crohn's has a "skip pattern" which means it can manifest in patches between healthy areas of intestine. Crohn's can also manifest anywhere from mouth to anus and is sometimes difficult to pinpoint especially if it is in the small intestine. Sometimes, unfortunately, it can take years to get a proper diagnosis.
Q: I've had a lot of tests and have only gotten normal test results. Is it still possible that I have an IBD?
A: Absolutely yes, see above. Crohn's is sometimes very tricky to diagnose. It's also possible that you have a different illness that is causing IBD-like symptoms. Certain auto-immune illness such as Lupus or Addison's disease can cause symptoms such as abdominal pain, diarrhea, and nausea.
Q: I do not have diarrhea as a symptom. My doctor says that I cannot have an IBD if I do not have diarrhea. Is this true?
A: Absolutely not. With IBDs such as Crohn's and Colitis, you may experience diarrhea, constipation, or maybe even normal stools. If you do not experience diarrhea as a symptom, it does not mean that you do not have IBD. (And you may want to get a second opinion from a more knowledgeable doctor.)
Q: My CRP and other bloodwork is normal. Does this mean I do not have an IBD?
A: No. You can have normal bloodwork and still have an IBD. Approximately 10% of people with IBDs will have bloodwork in the normal ranges even when they are badly inflamed and very ill. Generally speaking, bloodwork is not a super reliable indicator. It can be a good tool, but it can also sometimes be inaccurate of what's really going on inside your body.
Q: My doctor has basically given up on me and says he cannot help me any further. What can I do?
A: If this is your primary care doctor, you should find a new one. If this is your GI, ask your primary care doctor for a referral to a new GI. Not all doctors are created equally, and some just run out of ideas or cannot be bothered to deal with tricky cases. A second opinion is sometimes all that you can do.
Q: What are the best tests to have to get a diagnosis?
A: All of the diagnostic tests are different and no one is necessarily "better" than any other. Having said that, sometimes blood work can be unreliable. Colonoscopy and upper endoscopy are good because they can take biopsies, but they cannot see most of the small intestine. Pill cam is good because it can see the entirety of the small bowel, but it cannot take biopsies. MRIs tend to have better image quality than CT scans.
Q: I've been ill for a long time with no diagnosis. Does it ever get better?
A: It can, most definitely. I (Cat-a-Tonic) can tell you first-hand that it can get better. Even if you do not get a diagnosis, if your doctor feels that IBD is likely then he or she may try you on a trial of IBD medication such as prednisone, Entocort, or Pentasa. Personally speaking, Entocort has put my undiagnosed illness into remission and I now have many more good days than bad ones. It is possible.
Q: I feel so alone. Nobody understands what it's like to be ill and undiagnosed. What can I do?
A: You've come to the right place! There are many of us in the Undiagnosed Club who are going through something very similar, and we are here to support you and each other. Many of us have experienced family members or friends who are not able to understand what it is like to live every day with an illness like this and no diagnosis. If this describes you, you may want to have your unsupportive loved ones read the Spoon Theory, or describe your illness to them in a similar way. Here is a link to the Spoon Theory:
http://www.butyoudontlooksick.com/a...poon-theory-written-by-christine-miserandino/
Q: As an undiagnosed person, do I always have to post in the undiagnosed club?
A: Not at all. We welcome all questions and try to help where we can, but if you feel we are not the best equipped to answer, go ahead and post elsewhere in the forum as you feel appropriate. For example if you need to post about specific issues such as diet, or would like the advice of diagnosed members, please feel free to post in other parts of the forum if you wish to do so.
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