Asymptomatic Crohns and treatment

My crohns was found by accident, honestly. I had an abdominal CT so the docs can look at my uterus and it showed thickening of my intestines. Saw gastro doc and he asked me about symptoms and I said I have no diarrhea, no constipation, no blood, and only occasional cramping after eating. Now when I say occasional I mean maybe once every 2 months. Doesn’t last long, maybe 3-5 minutes. Well this MD does the colonoscopy, biopsy, and blood work and all three confirm active crohns ileitis with luminal stenosis. He starts me on Pentasa 4g a day and sends me on my way.

Not feeling very informed I visit gastro doc # 2 and he does a 2nd colonoscopy and it shows the same thing, active crohns ileitis and luminal stenosis. Now this 2nd colonoscopy was done 9 months later. He tells me the Pentasa is doing nothing for me and starts me on a 6 week course of Entocort then Humira will follow (first week of July).

Well I am scared to death to do the Humira after all I have read. The 2nd gastro doc said it is up to me if I want to do the Humira but he recommends it. The first gastro doc says no, keep me on Pentasa.

Just wanted to get feedback from this community on your thoughts and/or suggestions. Both doctors are highly trained physicians and come highly recommended. What should I do? Again, I am asymptomatic. I have noticed a significant increase in fatigue since being off the Pentasa but have also noticed my hair not falling out as much.

Thanks for any input.

Hi and welcome.

Its a tough decision. I'm not sure what I'd do if in your shoes.

Top down approach is to hit the inflammation hard with powerful drugs like humira and limit the damage caused by inflammation. The bottom up approach goes for the least powerful drugs that are working for the patient.

Sending you my support. Sorry I can't be much help.

It's hard to know how long you've had Crohn's and at what rate it's been progressing. Different people have different courses and some are probably very mild and close to asymptomatic. However most people who are diagnosed have significant symptoms and significant inflammation and need medication. You have fatigue
so I wouldn't call your Crohn's "asymptomatic."

I think there are some alternatives to Pentasa vs Entocort and Humira. From what I have read on this forum, Pentasa is not very effective for Crohn's ileitis though doctors still often prescribe it; it's possible that it works well for some people.

The fact that you saw two highly trained docs and got two different opinions, tells you that in some cases such as yours, there is no consensus as to what treatment is best.

Some people find dietary changes (enteral nutrition, juicing, avoiding certain foods, Specific Carbohydrate Diet to be helpful), herbal supplements, vit D, and/or low dose naltrexone to be helpful.

My son is 21 and had symptoms (weight loss and diarrhea) at diagnosis (mild/moderate Crohn's ileitis) 2 years ago. He was on prednisone for 6 weeks and then entocort (for 2 years now) and low dose naltrexone, juicing, vit D and B12 supplements. He didn't want to be on imuran or biologics. Entocort risks osteopenia... We hope his regimen is enough to prevent progression but we don't know.

What worries me is that Crohn's can sometimes progress a lot without a lot of symptoms.

There are no easy answers to be sure.