Not 100% convinced I was diagnosed correctly

[KTM1190AdventureR]

So I have been diagnosed with Crohns 4 months ago. I only have inflammation at the end of the small intestine and beginning of the large intestine. No weight loss, no bleeding, just bloating and small diameter bowel movements 1-1/2 inch. I am on pentasa, humira, prednisone, and another I cant remember. Pathology didnt say crohns, blood work does not show elevated signs of inflammation and I dont think the humira is working. I just dont want to have surgery if its not crohns.

 

[Clash]

It sounds like the inflammation was found at the most common place for CD, being ileocecal. I'm assuming when you say that biopsies didn't say CD you mean they didn't find granulomas. Although, those are a clear indicator they're not found in over 50-60% of cases maybe more depending on the study.

When CD is located in that area symptoms may not be the same as what you read as common symptoms, such as diarrhea, weight loss etc.

When you say the humira isn't working how do you mean? Have you had follow up testing such as scopes or imaging that have shown inflammation is still present? How long have you been on humira? It can take up for up 6 months for it to really start working.

 

[KTM1190AdventureR]

I have been on Humira for 6 weeks, and I am almost completely tapered of of the prednisone. I have not had a scope since starting the humira. But the GI doc said that if its working i should see an increase in caliber of BM's and the pain/ uncomfortable feeling in my sides and back will go away. I was thinking it was going to take about 4-6 to see if it works.

 

[RNGirl]

Hello, I'm fascinated by your post. I have the same dilemma. Diagnosed a couple of years ago. Labs great. Inflammation/ulcers in the terminal ileum. My pathology report from my colonoscopy said "inflammation" but nothing else. Feel great, eat really well, bowel movements one to two times a day. GI doc wants me to start Humira. Struggling with the risk of taking Humira versus staying the course for a while and continuing my supplements.
Plus I will be 62 in a couple of months and the studies I have researched say caution is warranted with crohns patients older than 60 years of age who are taking biologics. Hope you get some answers, because I have been frustrated with the same issues for a couple of years. Take care!

 

[ronroush7]

I agree with Clash.

 

[my little penguin]

Humira takes 3-5 months to start working
So keep that in mind
And methotrexate can be added to help boost humira
Or you can increase frequency from every two weeks to every week

But you need to give it time first

 

[Clash]

Yes agree with my little penguin for most it takes months not weeks so 6 weeks is probably not long enough to determine if it's working well yet.