I'm a 28 year old female with severe arthritis. I have been dealing with all the same symtoms of crohns with no diagnosis. I have lost 45+ pounds in 10 months with out trying to. My GI doctor said that I must just have IBS since all the tests came back normal, and I have also had the pill camera test so he said that would have shown any abnormalities. So my normal doctor put me on lomotil and I take that 4-5 times daily. So she sent me to another GI guy, a specialist and he ran some more tests and he said that he may not be able to find out whats wrong with me but obviously thier is something and even though I have ALL the symtoms of crohns it cant be or the colonoscopy, upper gi, and pill camera would have showed something. So he wanted to send me to the Mayo, and after waiting weeks even with the doctors referal they said they could not help me! My doctor put me on 60ml of prednisone daily and to ween down for a month and its the last two days of this drug and Im starting to go back words! The pain is coming back, along with the bathrrom trips, sickness everything. Im just not sure what to do because I cant just keep going like this, with two young kids and beeing sick all the time and not beeing able to eat its really hard. Does anyone know of any drugs out thier that work like prednisone but with out all the awful side effects? Or any other test any info would be sooooo helpfull! Thanks in advance
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- Thread starter allie_469
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Hi allie 469. Its a difficult one. Were you doing ok on the higher dosage of Pred?? If so then it sounds like you had inflammation. The obvious one IMO would be Entocort which is a steroid but without the side effects. The problem is that until they nail it as IBD then you are in a state of limbo & its not nice for you.
I hope you get better soon & get some finality as to whats wrong.
Regards
Grant
I hope you get better soon & get some finality as to whats wrong.
Regards
Grant
Please look into getting food allergy testing. You may be consuming something that is causing inflammation in your body...prolonged inflammation causes disease (i.e., Crohns). if you can not do that, you can easily eliminate gluten, breads, wheats, grains, etc., from your diet. Make sure you do not drink anything with corn in it (corn glucose., etc) as well. Eliminate all carbonated beverages. This may help reduce some inflammation and discomfort. These are the most common food sensitivities. good luck!
Pred
I was doing amazing on the high doses of the meds. I didnt even need to take the Lomotil, but now sence Im only on 20ml a day vs 60 and im getting off it in two days all my symtoms are coming back and its like payback for feeling soooo good, its awful! I asked my doctor to put me on this and sheagreed but only to get me threw the holidays, so now Im back to square one! Do I just keep going to GI after GI they just dont want to do any other tests, I even asked for another colonoscopy as awful as that was cause maybe they missed something, but no one will run any more tests, they said they will not find anything, I just dont know what to do. Also I don't have ceiliac, and not lactose intolerant.
I was doing amazing on the high doses of the meds. I didnt even need to take the Lomotil, but now sence Im only on 20ml a day vs 60 and im getting off it in two days all my symtoms are coming back and its like payback for feeling soooo good, its awful! I asked my doctor to put me on this and sheagreed but only to get me threw the holidays, so now Im back to square one! Do I just keep going to GI after GI they just dont want to do any other tests, I even asked for another colonoscopy as awful as that was cause maybe they missed something, but no one will run any more tests, they said they will not find anything, I just dont know what to do. Also I don't have ceiliac, and not lactose intolerant.
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Rheumatologist
Yes I have had a rheumatologist for the last three years and they have always said that they are not sure why I have such bad arthritis. They just want me to take melexocam and other drugs to help my pain and help manage my arthritis but it kills my stomach and thats the frustrating part because I can't take any thing but the tylonol with codine. So I live in pain from my stomach problems and my arthritis. But they have nothing that they can do for me! I feel lost, and they make me feel like im insane and I should just grin and bare it cause its just IBS, so they say!
Yes I have had a rheumatologist for the last three years and they have always said that they are not sure why I have such bad arthritis. They just want me to take melexocam and other drugs to help my pain and help manage my arthritis but it kills my stomach and thats the frustrating part because I can't take any thing but the tylonol with codine. So I live in pain from my stomach problems and my arthritis. But they have nothing that they can do for me! I feel lost, and they make me feel like im insane and I should just grin and bare it cause its just IBS, so they say!
Hi Allie -
I would have hoped that given how the prednisone helped, they would be willing to try the other immune related medicines that you could take longer term. Here is the link to our undiagnosed club where there are a few girls with similar symptoms and positive response to steroids, yet are still waiting for a diagnoses and proper treatment:
http://www.crohnsforum.com/showthread.php?p=389233#post389233
I would have hoped that given how the prednisone helped, they would be willing to try the other immune related medicines that you could take longer term. Here is the link to our undiagnosed club where there are a few girls with similar symptoms and positive response to steroids, yet are still waiting for a diagnoses and proper treatment:
http://www.crohnsforum.com/showthread.php?p=389233#post389233
Do you have any ideas of what drugs may be an option, my gi won't give me anything so I have to talk to my gp. She is just not to familiar with this stuff, thanks
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If most of the symptoms are abdominal, entocort is a sythetic cortisone that is processed very rapidly by your system and mostly acts only on your GI tract. It doesn't have as many side effects.
A lot of us have been through this. Hang in there. It is hard to diagnose.
A lot of us have been through this. Hang in there. It is hard to diagnose.
