Trying to work, still technically undiagnosed... advice, please ?

[Arin B]

Hi All,
After 6-7 weeks of prednisone induced bliss, I just crashed this weekend. I'm new to the Crohns thing, but it seems like my flares almost always begin with pain in my eyes, sores on my legs/arms and a really painful tongue. Do you other crohnies get this? So far the only thing that helps it is a big old dose of pred, which doesn't work as well as it did.

My dr hasn't officially diagnosed me with Crohns, though we've ruled just about everything else out. My blood panel came back positive for Crohns, but I've not had a positive scope yet. The dr wants to do another scope, but I'm afraid to take the time from my new job. Plus, I'm afraid it won't even show anything.. again.

So I need to start a new treatment, since i've been on the pred for too long... and it's stopped working. I'm scared and nervous that I'm at this new job and here comes a flare.

Any thoughts on treatment? Can the dr prescribe me something like Entocort, Humira, etc without a positive scope? Sorry this is a little scattered. I'm really worried and scared... but know that only makes it worse!

 

[Jennifer]

I'm new to the Crohns thing, but it seems like my flares almost always begin with pain in my eyes, sores on my legs/arms and a really painful tongue. Do you other crohnies get this?

Yes some people do have those symptoms although the "painful tongue" is a new one to me.

My dr hasn't officially diagnosed me with Crohns, though we've ruled just about everything else out. My blood panel came back positive for Crohns, but I've not had a positive scope yet. The dr wants to do another scope, but I'm afraid to take the time from my new job. Plus, I'm afraid it won't even show anything.. again.

A scope isn't the only way to diagnose crohns. Many times even the most talented GI can miss the infected gut, not to mention they can't get the scope to go through your small intestine. A barium follow through can also help diagnose the unseen areas along with other tests. Maybe you could try a second opinion with another GI (I think most if not all of us recommend shopping around for a GI rather than settle for any old one).

So I need to start a new treatment, since i've been on the pred for too long... and it's stopped working. I'm scared and nervous that I'm at this new job and here comes a flare.

Dealing with jobs and school is always hard because you have all these problems and you fear getting fired or getting bad grades but in reality, this is a disability and you can't be faulted for that by law. Even though you don't have a diagnosis yet, perhaps you can talk to your new boss about suspected crohns because you have the symptoms but are currently getting treatment and are having tests done to get an actual diagnosis. People are very understanding really when it comes to something as serious as this. If they know your condition, then if you're late or call in sick, they aren't going to automatically think that you're just lazy or a bad worker.

Any thoughts on treatment? Can the dr prescribe me something like Entocort, Humira, etc without a positive scope? Sorry this is a little scattered. I'm really worried and scared... but know that only makes it worse!

I've honestly never been a big fan of giving pills to people without there being a diagnosis. I don't know if they can or not but so far they've given you Pred with no diagnosis. Seek a second opinion to help you with at least peace of mind. Being scared and worried happens to everyone. Just try to be calm because it will be ok.

 

[Trysha]

Hello Arin
Sorry to hear of all the problems you are experiencing and hope for a solution soon.
The symptoms you are having would seem to add up to Crohn's, which can be a very elusive diagnosis.
Does your gastroenterologist know of all the others symptoms, if not you must let them know.
The sore mouth could be aphthous ulcers which goes with Crohn's as do your other symptoms.
It could be considered unethical for any doctor to prescribe high powered drugs such as Humira and others used for Crohn's, without doing the proper investigations.
A prime tenet of medicine is ---First, do no harm.
Unfortunately for some of us this entails repeating some procedures and using others and we end up on a diagnostic merry-go-round!.Finally a diagnosis will be found but sometimes takes time.
Has your doc suggested CAT scans with double contrast or CAT Colonography.?
It would be wise to follow the doctors investigational advice.
It would also be a good idea for you to call the GI and discuss your present symptoms as soon as possible.
Don't wait for the next appointment, do it now., since delays can cause problems again with Crohn's.
It can be very difficult when it comes to jobs and school, but first things first you must take care of the health issues and other things will follow.
Hope this is of some help to you.
Lots of hugs
annsplash

 

[Arin B]

Thanks so much for the advice Annsplash and Crabby! It seems like there are a bunch of things that we haven't tried yet- and I'm going to take your advice about seeing another GI. My current GI seems to be somewhat... uninspired. I was just hoping that the positive blood panel and all the other syymptoms would be enough to start treating the crohns- but I don't know.

 

[Jennifer]

Thanks so much for the advice Annsplash and Crabby! It seems like there are a bunch of things that we haven't tried yet- and I'm going to take your advice about seeing another GI. My current GI seems to be somewhat... uninspired. I was just hoping that the positive blood panel and all the other syymptoms would be enough to start treating the crohns- but I don't know.

I honestly don't know either. I mean in my mind positive means positive but now I'm just as confused as you. I think another GI is a really good idea especially if you aren't comfortable with your current one or you want to be super sure about something and I'd imagine that a diagnosis is something you want to be super sure about. Good luck!

 

[Trysha]

Hello Arin,
Do you know the tests that were done for your "blood panel"
If they were ESR (sed rate) and CRP (C reactive protein) these indicate inflammatory processes within the body and are not "specific" for Crohn's.
However, they are useful indicators when other tests are added in and can all add up to Crohn's.
It does not mean these indicators can replace vital diagnostic procedures such as colonoscopies, CAT scans, sigmoidoscopies etc.
Laboratory tests are there to confirm the physician diagnosis.
The GI must cover for all other eventualities by thorough investigations..
This is why we need to have really good GI specialists and if not satisfied with one then look for another.
kind regards
annsplash

 

[Crohn's 35]

:thumright:Hi Arin welcome to the forum. Glad you found us. Anyone with stomach problems are welcomed here, we know it is all it is not in your head, and it is tough to find a diagnosis, many here without one.

I sorta agree with Crabby about not giving meds without a diagnosis...but then again I am not a fan of being in alot of pain whilst waiting for one. Everyone has a different pain threshhold, mine is high but it wears you down, causes stress and that irritates the gut.. the cycle continues.

Getting a second opinion with fresh eyes and thinking outside the box can make a huge difference.

:hang: let us know what you decide and the outcome.

 

[Arin B]

Thanks, everyone! I think that I'm getting closer to diagnosis... the blood panel wasn't for CRP or SED rate, it was a super specific panel done to test ANCA and ANNA (i think?) for inflammatory bowel disease. The panel can differentiate from Crohns vs. Colitis. I tested positive for Crohns and negative for Colitis. Apparently it's some new-tech method that drs can use for IBD diagnosis.

My vit D was a little low and thyroid antibodies were high. The prednisone has been a life saver... until it quit working! Other than doing another rounds of scopes, I don't know what other tests we can do. I'm going to talk to my dr on wednesday about some new options, i've not had a scope since last fall. who knows what's going on in there now!

 

[Trysha]

Hello Arin,
It is good that you have had those specific tests.
Good idea you have about discussions with your doc.
Way to go
Good luck
annsplash

 

[Manzyb]

Thanks, everyone! I think that I'm getting closer to diagnosis... the blood panel wasn't for CRP or SED rate, it was a super specific panel done to test ANCA and ANNA (i think?) for inflammatory bowel disease. The panel can differentiate from Crohns vs. Colitis. I tested positive for Crohns and negative for Colitis. Apparently it's some new-tech method that drs can use for IBD diagnosis.

Hey Arin!

Hang in there. I hope you start to feel better soon!

I was also had the blood test that is suppose to differentiate between crohn's and colitis, and I actually turned up NEGATIVE for both! I was diagnosed with Crohn's 11 years ago and doc I had been seeing out in California when my husband and I were stationed out did the blood test just out of curiosity. He said that it wasn't always accurate as he had had a few other Crohn's patients turn up negative for it also.

I don't wish Crohn's on anyone, but I hope they figure out what is wrong with you and can put you on medication that will help you out.

Amanda