Typical Crohn's Story

[Jpow]

Hello, after lurking on this site for a few weeks, I decided I should join. I was diagnosed with Crohn's in November 2009 when I was 15. After Thanksgiving that year, everything went downhill. I started getting worse and worse pain. I was hospitalized in December and the doctors put me on 6mp and prednisone. The pain was still there but not as bad. In the following months my doctor took me off prednisone(I was happy about that). But In March i was hospitalized again because of an abscess and was put on antibiotics(amoxicillin I believe). After dealing with the abscess, the Crohn's pain was still there but manageable. But in July 2010, the pain was starting to get really bad again to the point where I didnt do much of anything except lie down in pain. My doctor had me get an MRI, and it showed my intestines were extremely inflamed. Soon after I had a resection, and after that I was doing a little better. Fast forward to summer 2011. After a capsule endoscopy showed still present Crohns activity, my doctor then put me on remicade. Since then I have been doing very well and it seems remicade is doing a great job !

 

[Clash]

Welcome to the forum! I am so glad to hear that Remicade seems to be working so well for you! My son is on Remicade as well and has been since last year.

I do hope that things remain well for you, please keep us updated with your progress.

 

[David]

Hi there and welcome to the community. I'm glad to hear the Remicade is doing well for you!

What part of your intestines was removed? The terminal ileum?

All my best to you.

 

[Ehohnadel]

That sounds so upsetting. But I'm so happy your getting better!

 

[Jpow]

Thanks everyone for the support! And David, the doctors told me they removed parts ileum and something else too but its been too long. Probably sounds bad I cant remember whats been done to me. haha oh well

 

[David]

The most common resection for people with Crohn's is the last part of the ileum (the terminal ileum) the ileocecal valve, and the cecum. If this is the case for you, be sure they monitor your vitamin B12 and magnesium levels as people with that resection commonly develop deficiencies in those which can lead to a whole host of problems that could be easily avoided with early detection and proactive supplementation.

 

[Jpow]

Ive seen people talk about b12, is that something i should talk to my doctor about? He has never said anything to me before about it

 

[David]

DEFINITELY. The terminal ileum is where vitamin B12 is absorbed. People with Crohn's disease are already at great risk for B12 deficiency and resection of part of the terminal ileum increases the chance of it. It is VERY common and you absolutely need to have your vitamin B12 level monitored.

We have a good wiki article about it here if you want to learn more and to print out quality references for your doctor. In addition, Emmanuelle D. Williams, M.D. talks about B12 in our Ask the Experts forum located here.

 

[Jpow]

Ok I will bring this up to my doctor at my next appointment. Thanks for the info David.

 

[Jpow]

I'm still surprised hes never said anything about it

 

[David]

I'm still surprised hes never said anything about it

It's not uncommon. We have to educate many people here about it who subsequently educate their physicians.