What is considered mild crohns disease?!?!?!

[Kendra2276]

The doctors do not want to definitively diagnose me with Crohns Disease. As of right now, they are saying it is most likely mild Crohn's Disease. Most likely as in eh we are not confident calling it 100% Crohn's Disease. Frustrated because eating causes sooo much pain!

So what are the symptoms of mild Crohn's Disease?

This is what is in my chart:

TI thickening on CT. 2 capsule endoscopies both showing small aphthous ulcers in mid to distal small bowel. abdominal pain, loose stools. right sided abdominal pain that is constant and made worse with eating and exercise. Weight loss of ~20 pounds over past year. +Hip and knee pain. Fatigue but does have poor sleep. migraine . environmental allergies and food allergies. And the day of the gi visit she had red eyes. Negative blood work.

So I am doing a month of steroids and then I guess fending for myself.

 

[Maya142]

That's ridiculous - they're giving you steroids so they're treating you for IBD, but they won't call it that?? Even though you have ulcerations in your small bowel AND TI thickening?

I would see a second opinion. My daughter was diagnosed with mild Crohn's with small aphthous ulcers in her colon and an inflamed and friable TI. I guess she was diagnosed because they got biopsies which showed both acute and chronic inflammation, as well as granulomas. She was put on Remicade and Methotrexate.

I think small bowel Crohn's is harder to diagnose, but I'm really surprised that with all of that evidence you haven't been diagnosed.

 

[Kendra2276]

Yah the doctors are admitted about blood work and biopsies. Since I had the capsule done, there was no biopsy. Then the all the inflammatory markers are negative (blood work and stool test).

Unfortunately, I have gone to the two main hospitals.

Hospital A. Wants to give me the month of steroids and then a follow-up.

Hospital B. They do not want me on anything. Which sounds like a terrible idea because I have lost a lot of weight.

I am also suspicious about blood in the stool. There no hard blood and I am not anemic. However, there are coffee grounds and black specks in the stool/toilet paper. And of course, the doctors ignore that.

Just overwhelmed.

 

[Maya142]

Have you done an occult blood stool test? That will tell you if there is blood in your stool that you can't see.

I'm guessing you had a colonoscopy and endoscopy first? And those were negative?

There are bunch of people who have very clear IBD but perfectly normal blood work. So that shouldn't count against you. Plus, what else could it be? I'm sure they have ruled out infections. Do you take NSAIDs? Those could cause ulcers.

The standard treatment is usually to start with steroids but also a maintenance medication. The steroids induce remission and the maintenance meds keep you there. It sounds like they are giving you a steroid trial - if you feel better with steroids, then it's probably inflammatory. Then maybe they will put you on a maintenance med.

I would go ahead and do the steroids, if you can't find another doctor/hospital for a third opinion. Chances are, you will feel a whole lot better and hopefully that will confirm IBD to them

I'm still surprised though - a thickened TI is classic Crohn's...

 

[Kendra2276]

I have not done an occult blood stool test.

You are correct. The colonoscopy and endoscopy were negative.

No NSAID abuse. That is for sure. Last time I used NSAID was in October. Had a migraine and was treated with NSAIDs which is how I know the date of the last intake of NSAIDs.

I sure hope the steroids help. Ready to be more functioning and not being such a robot just to make it through the day.

 

[Scipio]

When I was diagnosed with "mild Crohn's" the evidence was this:

1. 6 CM TI thickening by MRI
2. "A few" ileal aphthous lesions seen via capsule endoscopy
3. One bout of severe anemia
4. Recurrent bouts of mild ileal pain
5. Unexplained fevers once or twice a year
6. Colonoscopy clear
7. Upper endoscopy clear
8. CRP and sed rate normal
9. No diarrhea
10. No weight loss
11. No trigger foods - can eat pretty much anything

As the story unfolded it was the anemia that sent me to the GI in the first place. He started the hunt with the scopes and kept doing more tests and gathering more evidence to try to decide once way or the other. The decider turned out to be the ileal aphthous ulcers. When he saw those he diagnosed Crohn's and put me on occasional one month courses of budesonide.

Things stayed pretty stable for about 5 or 6 years when the disease started to progress resulting in a moderate ileal stricture and an extra-intestinal Crohn's manifestation as pericarditis requiring surgery. At that point he brought out the big guns and put me on Stelara, which so far is working.

So you case looks similar to mine except that your doc for some reason is reluctant to definitively diagnose Crohn's, whereas for mine the aphthous lesions were the key piece of evidence that cinched the diagnosis.

 

[Maya142]

Have you seen an eye doctor? Are your eyes still red? It could be allergies, but there are some extra-intestinal manifestations of Crohn's that affect the eyes. It could be Iritis and if it is, it needs to be treated ASAP. So I would see an ophthalmologist (not an optometrist). Tell him/her you may have Crohn's and are worried about iritis or uveitis. That should get you in faster.

If you do have uveitis it can cause lots of problems if left untreated, so it really important to get checked out.

And if you do have it, that is more evidence there is something inflammatory going on. Though honestly your case is pretty classic small bowel Crohn's - I can't believe they won't diagnose you. That just seems crazy to me.

 

[Kendra2276]

Oh my God, the trigger foods. I have soo many. Right now only about 10-15 foods are safe . Anything else gives me a severe migraine and or right side pain.

 

[Kendra2276]

That's a good idea. I will for sure look into a legit (can't think of the word) eye doctor.

 

[Scipio]

That's a good idea. I will for sure look into a legit (can't think of the word) eye doctor.

Ophthalmologist.

 

[my little penguin]

Ds had “mild” Crohns
Colonoscopy looked clean
But chronic /acute inflammation plus granulomas were found on biopsies
MRE showed thickening of TI
No ulcers seen
Went on remicade due to eim (vasculitis /joints etc..)
After that no evidence on any scopes of any disease for years so much so they questioned Crohns dx
Switched to Stelara recently from humira
And BAM - mild chronic illeitus that was healing
So evidence of typical Crohns when starting a biologic

Ds has moderate juvenile spondyloarthritis so biolgics will always be in the picture
Regardless of mild Crohns

Definitely see Opthamologist/and rheumatologist if any muscle joint pain

 

[Lady Organic]

Do you notice some improvement with the steroids so far?

 

[Kendra2276]

Starting Steroids this weekend. I am a college student and this week I had an exam, presentation, and work-study.

Plus I loved the idea of trying to see an eye doctor, go in April 20th.

Ready to not be in pain, thats for sure!