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Beyond frustrated

How long has it taken to get a IBD diagnosis? I have been out on prednisone 3 times since the end of May without a diagnosis. Just getting told it is likely IBD but that there is no concrete evidence. I am not a fan of prednisone especially during a pandemic and especially for a condition no one seems to be able to say for certain I have. I feel frustrated and defeated.
 
Have you done any tests? Colonoscopy, scans, specific blood tests, etc? Once you have been tested, it shouldn't take long to get a diagnosis, but without the proper tests, you won't know for certain.
 
Have you done any tests? Colonoscopy, scans, specific blood tests, etc? Once you have been tested, it shouldn't take long to get a diagnosis, but without the proper tests, you won't know for certain.
I had a CT that showed 60% inflammation of the colon. I was put in prednisone. I stopped prednisone symptoms returned. Was out back on prednisone for 8 weeks. Had a scope done while being on prednisone for that amount if time which was normal. I was told that could have been due to the prednisone. I weaned of the pred and was told to wait to see whst happens.
 
So you might have to do another scope eventually. I can see why you would be frustrated. Do you have a GI at this time or just dealing with your family physician? You might want to reach out to move things along, especially if you have weaned off prednisone and still having symptoms. Once you get your diagnosis, you will be put on the proper IBD medication to get it under control. Waiting for answers is usually the hardest part.
 
So you might have to do another scope eventually. I can see why you would be frustrated. Do you have a GI at this time or just dealing with your family physician? You might want to reach out to move things along, especially if you have weaned off prednisone and still having symptoms. Once you get your diagnosis, you will be put on the proper IBD medication to get it under control. Waiting for answers is usually the hardest part.
I am working with GI. This last round of bleeding he told me to see how it progresses. I ended up being admitted to the hospital. My GI said he is suspicious that it is IBD but has no concrete evidence.
 

my little penguin

Moderator
Staff member
To get evidence you need testing when you haven’t been on steroids and are flaring
Please get a second opinion from another gi at another hospital
 
To get evidence you need testing when you haven’t been on steroids and are flaring
Please get a second opinion from another gi at another hospital
I am working on that. My PCP instead suggests I stop eating meat. His exact words were you are going to keep doctoring and you are going to end up on humira or remicade and That he wouldn’t even put those meds in his own body.

It is hard to get testing done while off prednisone when everyone keeps putting me back on it. This last time my GI said to watch and see what happens. I did that and he ended up being gone the week my symptoms intensified. Last time I saw him he said he would consider the capsule study but now I am on prednisone again so I am not sure how accurate it will be at this point.
 

my little penguin

Moderator
Staff member
Please find a new pcp
Gi should be driving the Gi ship not pcp
Meat is not the cause of crohns
Remicade has decades of patient data from crohns patients young and old taking it
Humira is used in crohns and arthritis
Kids as little as 4 have been on humira again for years
My kiddo has been on both for over 6 years (remicade 8 months and humira 5 years )

our pcp doesn’t give Gi or arthritis advice or prescribe any of those meds
He leaves that to the specialists

when my kiddo saw a pediatrician same way
He left those areas to the specialist
 
Please find a new pcp
Gi should be driving the Gi ship not pcp
Meat is not the cause of crohns
Remicade has decades of patient data from crohns patients young and old taking it
Humira is used in crohns and arthritis
Kids as little as 4 have been on humira again for years
My kiddo has been on both for over 6 years (remicade 8 months and humira 5 years )

our pcp doesn’t give Gi or arthritis advice or prescribe any of those meds
He leaves that to the specialists

when my kiddo saw a pediatrician same way
He left those areas to the specialist
I might switch PCPs to the provider who saw me this last hospitalization as he is seeing new patients. He at least seemed to understand that frustration and offered to contact other providers and even run my case by the rest of his colleagues. One thing that was mentioned was Behcet's disease but I really know nothing about that. I see my GI this week and hopefully have some answers.
 
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