IBD in the lungs!?

I had successful J-pouch surgery 5 years ago for ulcerative colitis. Since the surgery I've always had bronchitis symptoms off and on with lots of sticky fleem coughing up. I have never been a smoker. I had a child two years ago which I know now made these new symptoms 100 times worse aggraviating this disease. Antibiotics DO NOT work on these symptoms. I was finally diagnosed by being put to sleep having a microscope and biopsies taken from an endoscopy procedure. Symptoms are very similar to those with fibrosis in their lungs. I currently am seeking a doctor who has a patient or two like me to treat me the rest of my life. Most doctors have not ever heard of such a disease. The name is extra manifestation of IBD. As I understand it could be the lungs, bladder, kidney, heart, etc...I had j pouch surgery at Lahey in Boston, MA and out of all their thousands of patients they treat, they've only had one being effected in their lungs. I use advair and steroids off and on with bad flare ups for my lungs. I would love to talk with anyone out there with manifestations anywhere in their body. I'm not getting my hopes up for any replies though.

It wouldn't be IBD in the lungs, it would be an IBD-related manifestation of the lungs.

EXCELLENT article pb4!

Welcome to the forum ibd in the lungs.

I do hope you'll be able to get with the specialist who can diagnose you with exactly what you have.

Have you for sure been checked out for cystic fibrosis?

I discussed this with my doc a while ago because another IBD member had brought up the fact she had IBD-related lung disease other than asthma.
My doc stated there is a mesalamine/mesalazine influenced lung disease...but it doesn't seem the case with you.

I do hope you are able to get a definitive diagnosis other than just IBD-related lung disease.

Please keep us posted with any information as to how you're doing.

quincy

This isn't IBD in the lungs per say but extrainestinal manifestations of UC. You can meet others who have a variety of EMs at www.j-pouch.org

Sue

Don't know if there might be any connection, but I just got back from Mayo Clinic-Rochester where I tested positive on CMV special stains on biopsy for Cytomegalovirus Colitis (CMV Colitis) in addition to my currently flaring CUC. This virus can do some really weird things in the body once it takes hold. You would most likely have to have been on heavy immunosuppressants in the past though for it to activate/reactivate in your body.