Update: Diagnosis may be near

[dahlfacepoet]

Hello all!
Posted in the Undiagnosed Club, but thought I'd update on here too. Today I had my colon/endoscopies. My GI found aptha in my terminal ileum and says it could be an indicator of CD. So he ordered a Pill Cam and another blood test. It's called a Prometheus IBD test, anyone know what that means?
I am definitely afraid of a diagnosis, but I want treatment badly. The pain is getting pretty bad and I just wish, well what you all wish for too right?
But then, I'm afraid of the treatment. I'm still very young and the idea of medication really scares me.
Any advice in facing a dx?
I'm also high risk for MS and display some symptoms, and I've read that some genes that have been found to play a key in MS can also be linked to IBD and other auto-immune disorders.
Can I do more than just struggle to stay above the surface?
Thanks
dahlface

 

[Mumof4]

Hi I found this which may be helpful.

PROMETHEUS® IBD Serology 7 is a test to help your physician determine if you have Inflammatory Bowel Disease (IBD), and if so, which type: ulcerative colitis or Crohn’s disease. Test results may provide your physician with prognostic and other useful information, and help determine the best course of treatment.

 

[Daunting]

Hi.

Glad to hear that you maybe close to a diagnosis. I too am still waiting. I am also terrified but at least with a treatment in mind things will get better for us. May I ask what aptha is??

Wishing you the best.

 

[Mayflower537]

I've had the Prometheus test. It tests for certain antibodies and then compares your results with those of confirmed Crohns sufferers and UC sufferers. They use something called their "smart algorithm" to come up with the results. It's a weird test, b/c all your antibodies can be within the normal range, but if the pattern is close to that of ppl's who have the disease then yours will be too. I had one antibody that was out of range and my results were "consistent with IBD: Crohns disease." Nothing else was found in my case. Sorry something showed up but that means treatment and hopefully improvement.

 

[scottmyster]

HI dahlface, i am glad your one more step to getting a diagnosis. i am sorry you are still suffering. but, being stressed out what is in the future like your fears of MS you may never have to worry about is unnecessary at this moment take it one step at a time and one day at a time. i have had crohn's for 21 years now and 8 years ago was diagnosis with bipolar disorder(manic depression) so, we don't know what the future holds in store for us. but like i said take it one day at a time. Try not to worry too much about the future. i Know you have fears. But if you are diagnosised with crohn's. you know yourself there are meds that can helped you for that and it might not be severe and can be mild
so, try not to stress yourself out because you will make things worse for yourself. i hope you suffering will end soon. best wishes.:rosette2:

scott

 

[chrisnsteph1022]

Don't rely too much on the prometheus test. Mine was negative and I most definitely, without question, have Crohn's. It's not 100% accurate.

 

[Jessi]

Yeah... the prometheus test may not give you a solid answer, so don't get too let down over your results. Is your doc doing any biopsies from the scopes? Biopsies are good indicators.

Be well, my poetic friend. :hug:

 

[Lisa]

I had the test done years ago.....one thing to watch for, which is unrelated to a diagnosis - make sure your insurance company covers the testing! I got hit with a surprise bill of around $500- for the tests!

 

[sunflower]

I had a doctor un-diagnose me when he ran the Prometheus test on me and it was negative. I had to fire him and get a new doctor. My biopsies had been confirming Crohn's for 15 years. And yes, people can have more than one auto-immune disease. It is not that uncommon. But, we cope. They have thought I have MS off and on for years, but it doesn't show up on the MRI. For a long time I worried, but if I do have it, I have the kind that you heal from cause I haven't had much progression. (I have some residual effects, but I have learned to work around them) I have learned not to worry about that, also. Now they are looking at possible AS, another disease that can go hand in hand with Crohn's. I am a little stressed about it, sure, but if I have it, I have it. The meds I take for Crohn's will help it, too. And you do get used to taking meds. They just become a part of your life, like brushing your teeth. You need them to get better, so you just do it, and don't worry about that, either!! I am feeling mellow tonight!! LOL!!!

 

[dahlfacepoet]

Thanks for the advice everyone! My doc did take biopsies and should be getting those back in a couple weeks. I'm trying not to worry, but it's very difficult. I went back to work yesterday for a short shift and barely got through it. I had to take off a semester of school too. I know what you all mean though, it's better not to worry about it now. Worrying will definitely not help me at all.

 

[Jessi]

Well, good. I'm glad you got biopsies. I hope they give a solid answer soon. Keep us posted. We're all here for you.