What is subtle Crohn's?

[quirkysoul]

I am so mad I could spit nails. I saw a surgeon today because I am having worsening lower right quad pain. Had an adhesion released in this same area late 2011, same pain and symptoms are back now. The surgeon read verbatim my gastroenterologists diagnosis, "severe IBS or subtle Crohn's". What does subtle crohn's mean? My GP says I don't have IBS. The nutritionist she referred me to says I don't have IBS. I have always felt this was more than IBS. Does this mean I have CD and it just hasn't damaged my intestines yet?

Thanks in advance,

Meg

 

[mickey]

Each doc is different, so not sure the intention, so I would ask specifics until you are comfortable. Perhaps it means you are presenting some symptoms of the disease, but not full blown disease; at the cusp, perhaps? Be thankful and do what you can to get better. Feel better soon.

 

[Cat-a-Tonic]

Meg!!! (In case you can't tell, I'm always happy to see you around the forum.)

I've never heard of "subtle" Crohn's. They could mean very mild Crohn's, or Crohn's that is near remission, something along those lines. Although I know you've been having some rough symptoms lately so I don't know how that can be construed as subtle.

I did read something on here once that suggested some doctors now feel that very mild inflammation can be a symptom of IBS. Then again other doctors don't even feel IBS is a real thing, or could be multiple things under a catch-all title. So who knows. It sounds like a fishy thing to me, calling it subtle. Do you have tests/appointments coming up? I would ask your doctors for clarification on this.

 

[quirkysoul]

Thank you ladies. It would explain why the steroids I have taken for asthma flares helped clear up my gut issues. It would explain the nutrient deficiencies, ... a lot!

I just don't know where to go from here. He told me when I called last month for blood on my undergarments and he said I had to get worse to see him.

 

[Cat-a-Tonic]

What! They said bleeding isn't worth an appointment?? That's crazy and wrong. Was it your GI who said that? If so, I think it's time for a new GI. Blood is never something to take lightly, especially if it's a new or unusual symptom for you. It sounds like all your other doctors agree that it's more than "just IBS" so you need to find a GI who is on board with that too.

 

[xmdmom]

It sounds like your doctor is not sure if it's IBS or mild Crohn's. Have you had upper and lower endoscopies with biopsies and a CT or MRE of your small intestine? Which vitamins are deficient? Sometimes a diagnosis of Crohn's is hard to make because the work up was not complete. Other times, Crohn's might be very mild and difficult to diagnose.

 

[UnXmas]

Do you know which tests they used to reach that diagnosis? As xmdmom says, biopsies are a good idea. If your IBS/"subtle Crohn's" diagnosis was based on a less thorough test which produced vague results, that might have caused them some confusion. It's important to get a clear diagnosis, because if you do have Crohn's, even if it's mild now, it could lead to problems if you're not given appropriate treatment. But if you don't have Crohn's, you don't want to risk side effects from harsh medication, etc. unnecessarily.

I would go to whichever doctor you trust the most and ask them to clarify.

 

[quirkysoul]

He did both scopes and biopsies. He diagnosed me with crohns like ibs because of the test results. But, then I hear this yesterday. I won't be returning to him. My regular doc thinks I have it, that you don't have to have inflammation to be diagnosed. My nutritionist says I do not have IBS. I have already begun to have bowel issues, have another ct with icky contrast Monday. I get intense pain in my gut for no apparent reason.

Ugh!

 

[Johnnysmom]

I would request a copy of the biopsy.

The only thing I can think of that would be a legitimate for wording a diagnosis that way was if you were recently on steroids when you had your scopes. The steroids might hide the inflammation and make a diagnosis more unsure.

If your scope was completely clean I would think the Dr. was acknowledging that nothing showed up on biopsy but is noting your symptoms. I have IBS and it can be quite severe. My scope is clear but I have stomach pain daily and D sometimes 10 times a day.

I hope you find some answers and relief soon. (((((Hugs))))))

 

[quirkysoul]

Thank you all. I have some digging to do, but I may be closer to my answers.

 

[ellie]

Just putting in my 2cents worth.. Just left a long comment on an iritis thread regarding steroid eye drops masking underlying CD
My thoughts - particularly for colonic, maybe not too severe Crohn's in the mature adult - can become relatively quiet with low dose steroids in a variety of presentations for other conditions (puffers, steroid eye drops, cream for skin conditions, etc)


HD

 

[Samboi]

I chuckled when I read "subtle Crohns".
There is nothing subtle about Crohns!

Mild Crohns can also turn severe very quickly.
I had mild Crohns and ten years of remission.
Within a few months - ileostomy and severe flare lasting 18 months.
Don't get complacent and if your GI does not listen to you or treat your disease with respect - find one who does.
Things can go horribly awry very quickly.