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Crohns? UC? neither?

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Crohn's Disease
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Posted 1/31/2009 7:05 AM (GMT 0)
In October I became sick (thought it was the flu) but it never went away and I was tentatively diagnosed with Crohns after a colonoscopy showed severe irritation throughout my entire colon. I have been on Prednisone ever since and was down to 5 mg when my symptoms came back-diarrhea, stomach pain and this time i developed arthiritis in my ankle. However, the Prometheus test for Crohns and UC came back negative. I have not been given one test that confirms I have Crohns..has anyone else been here? I am trying to accept the disease and how to deal with it but at the same time am not positive what I am dealing with. I am currently on 20 mg of Prednisone, tapering down to 15 soon and I feel good besides being tired all the time. Any advice is welcome, as this is my first time on the site....
Posted 1/31/2009 11:33 AM (GMT 0)
Hi breegs and welcome,
Did they take any biopsy's when you had the colonoscopy? I hope you dont have crohns but if you do then I hope you dont suffer too badly. I think you need to get some more answers from you GI because it is a lot of the time a hard disease to diagnose, it can sometimes take years to figure out that its crohns. It took about 2 years we think to diagnose me and have now had crohns for 21 years confirmed. When I was first diagnosed I was put on prednisone and mesalasine, but now on several other drugs including humira. Im sure someone else will be along soon to help you some more. Stay in touch and let us know how things go for you, they are a great bunch of people here, they have helped me through several hard times and I am forever greatful for the support and knowledge they have helped me with.
Take care
Posted 1/31/2009 11:36 AM (GMT 0)
Hi Welcome to Healing Well and glad you joined us. Did they do bloodwork and stool testing to rule out some problem such as infection or parasites. How was your bloodwork? Sounds like something must be going on in there and there are other test that might confirm your diagnosis. Also alot of us have low B-12 and need a multivitamin as well as intestines that are not well need the extra nutrients. B-12 helps perk me up I get a shot once a month. How are you doing on the pred.? It can be a hard med but works good on the bowels, also calcium and vitamin D are going choices while on pred. to help prevent bone loss.

Of course we need to talk over these things with our Dr's .. lol gail
Posted 1/31/2009 3:02 PM (GMT 0)
Some great suggestions above...

my only addition is to consider going to another GI? Diagnostic tests only mean as much as the doc reading them sometimes. Maybe another pair of eyes will find something? It took me a couple years and a couple docs to pin the tail on the donkey.

I hope you find answers soon. I know "limbo" sucks!
Posted 1/31/2009 3:57 PM (GMT 0)
Thank you for the help... I am actually doing ok with the pred. I haven't had any terrible side effects, so at least thats something. They did biopsies in the coloscopy but there was nothing conclusive there since I was not told anything regarding that. They did test for bacteria and there was none. Neither of the two GI's I have seen have asked for a stool sample, but Im in the process of getting an appt with a center that specializes in CD and UC, so hopefully some answers will come there and soon! I was told fish oil can help with the energy too? Im willing to try anything at this point!
Posted 1/31/2009 10:31 PM (GMT 0)
Hi Sounds good going to the specialist in the field and you are doing alright on the pred. ,that is great. I find sometimes I sleep in spurts myself now and a week ago I was having a couple naps a day mostly down to one now . I never tried the fish oil let us know if it helps. Maybe when you taper the pred you might get some more energy. Did you loose alot of weight before the pred.? Let us know how things are going. lol gail
Posted 2/1/2009 2:30 AM (GMT 0)
help man i really need help Dr dragging his feet to get autoimmune meds and now im going into remission finally after 4 months of hell lost 30# and only had tramadol percocet and levicin to manage have had w/ds for pain meds in the past but i really want to stop so i can be sober for once :)can anyone help and what is taking so long and i REALLY NEED HELP!!! I AM so scared about the life changes i am going thru "like losing the weight though :) but not this way
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