Colonoscopy #8 - Biopsy results - still "gray area" for me

[JenS]

Lab report says "Mucosal erosion with acute inflammation" in sigmoid colon. (Doctor saw the inflammation so he knows it is there)...

BUT Basically didn't confirm Crohn's or UC, but instead "unspecified colitis".

UGH, 20 years and 8 scopes later, there is still no definite DX!!!!

I get bleeding episodes about twice a year, but no test has given me an OFFICIAL DX yet.

So next step? Repeat Promethus blood work. $700 out of pocket. (I had it done 15 years ago. It leaned more towards Crohn's but again did not give a true answer). I have been in this "GRAY AREA" for 20 years! so frustrating.

 

[ronroush7]

I am sorry you are going through this. I hope you get an answer soon.

 

[Scipio]

Are you being treated? If so which medicines are you getting? If you are waiting on a definitive diagnosis to tailor the therapy perhaps you can just declare it a tie between Crohn's and UC and treat it with drugs that are approved for both - Humira for example.

 

[JenS]

Are you being treated? If so which medicines are you getting? If you are waiting on a definitive diagnosis to tailor the therapy perhaps you can just declare it a tie between Crohn's and UC and treat it with drugs that are approved for both - Humira for example.

So funny you ask. My GI doctor is hesitant to put me on meds right now. (In the past, I have done Flagyl, Bentyl, Steroids, Asacol and Rowasa.) He said there are too many side effects. At the same time, he is afraid to let it got if I am sick (plus as we know untreated IBD puts us at an increased risk of colon cancer). The current plan of action is to see what the Prometheus test says before deciding on a medication plan.

 

[my little penguin]

Have they looked into Spondyloarthritis?
A lot of times this has sub clinical inflammation in the Gi tract ( enough to cause a problem but not enough to warrant a dx )
http://www.spondylitis.org/Learn-About-Spondylitis/Ankylosing-Spondylitis


Tagging maya142

 

[Maya142]

If you have joint pain or morning stiffness, it is definitely worth seeing a rheumatologist and looking at Spondyloarthritis. Typically back stiffness in the morning, hip pain, SI joint or lower back pain (though really any joint can be affected) and swollen or red joints are signs of it. Pain that gets worse with inactivity and better with movement is also typical of arthritis.

 

[JenS]

If you have joint pain or morning stiffness, it is definitely worth seeing a rheumatologist and looking at Spondyloarthritis. Typically back stiffness in the morning, hip pain, SI joint or lower back pain (though really any joint can be affected) and swollen or red joints are signs of it. Pain that gets worse with inactivity and better with movement is also typical of arthritis.

That is a great idea!! I have all those symptoms.
At least if I see the Rhematologist, insurance would cover it (vs. the $700 Prometheus test!) THANK YOU

 

[2thFairy]

The Prometheus test is not very accurate for IBD. I wouldn't waste money on it.

 

[teeny5]

The Prometheus test is not very accurate for IBD. I wouldn't waste money on it.

Agreed! My GI thought it would help, but it didn't. My results didn't show the markers at all. He basically said it was a waste of time and money. I don't think I would ever do it again.