IBD in the lungs!?

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ibd in the lungs
New Member

Date Joined Mar 2008
Total Posts : 2
   Posted 3/25/2008 9:25 PM (GMT -6)   
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.

Elite Member

Date Joined Feb 2004
Total Posts : 20577
   Posted 3/25/2008 10:28 PM (GMT -6)   

I don't know that it's so much as actual IBD in the lungs, but here's a link I found for you...and it's extramly rare...






My bum is broken....there's a big crack down the middle of it!  LOL  :)

Post Edited (pb4) : 3/25/2008 9:32:18 PM (GMT-6)

Elite Member

Date Joined May 2003
Total Posts : 30835
   Posted 3/26/2008 2:53 AM (GMT -6)   
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.

*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Veteran Member

Date Joined Dec 2007
Total Posts : 1028
   Posted 3/26/2008 8:51 AM (GMT -6)   
I have IBD related renal tubular acidosis (kidney disease). 

diagnosed with left-sided UC in 1997.
Currently on 10mg Prednisone
12 caps of colazal
rowasa enema nightly
35 years old, white, female

Veteran Member

Date Joined Feb 2006
Total Posts : 5698
   Posted 3/26/2008 9:10 AM (GMT -6)   
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

dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

Regular Member

Date Joined Mar 2008
Total Posts : 263
   Posted 3/27/2008 9:03 AM (GMT -6)   
redface  ok I have been aggresively trying to fix my IBS for 5 years, cant remember half the medicine I have taken, on fmla for D that wont be controlled right now. I tried to control this myself after diagnosis 25 years ago Now that it controls me instead I have been trying to get control back. I now have elevated Liver E. and am really scared that I have done damage with all my meds. over the years .I had no idea this could affect the rest of the body. Should have realized that sooner, all the toxins and all. Thanks for sharing,now I know. I am asking on all forums, Dr. wants me to go to Mayo Clinic, anybody been?

New Member

Date Joined Mar 2008
Total Posts : 6
   Posted 3/31/2008 3:05 PM (GMT -6)   
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.
Imuran 225 mg, prednisone 12.5 mg. (tapering), stopped Humira, Valcyte 450 mg. 2X2/day (CMV Colitis diagnosed Mayo Clinic + UC)

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 3/31/2008 5:41 PM (GMT -6)   
Would you like to pop over to the Crohn's board and post a question there? We do have a member with Crohn's in the lungs. I can't remember who it is, though.

Co-Moderator Crohn's Forum.

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