Crohn's in the Lungs

[sm1210]

I was diagnosed with Crohn's in 2001. Years of prednisone, asacol, and 6mp, along with Remicaid, had finally pushed it into remission for the last 5 years. I developed a chronic cough last Aug. 2006 which would not go away even with meds from a pulmonologist and a laproscopic nissen since the doctors came to the conclusion that it was acid reflux. I did not even know I had acid reflux until they told me it was very bad and medicine did not affect it. Yet after the nissen the cough was as bad as ever. Now they think that the Crohn's has manifested itself in the lungs. My cat scans show extreme inflammation in both lungs and bronchial tubes and branches. Is this possible? My gastroenterologist told me if I came off my meds for Crohn's there was an 80% possibility of it returning. He did NOT say it could come back in a totally different system. I read one article about this and it seemed to fit my situation. It was only after the nissen they are now thinking this is Crohn's related. Has anyone else had this happen? I wish I had never asked to have my meds reduced, but it seemed silly to take all that medicine for such a long period of time when I was in remission. I never dreamed this could happen. For now I am back on the Prednisone until the pulmonologist and gastroenterologist confer and decide what to do. Help! My friends say go to Mayo for an opinion. Has anyone had a similar experience?

[Houstonpal]

I also have crohns and it has affected my lungs. I started having this chronic productive cough about 6 years ago. Nothing makes it go away and it has progressively gotten worse. My pulmonologist said it was inflammation and was related to my crohns. I am a respiratory therapist and know what damage and final outcome is from such inflammation and cough. The prognosis is not good. I'm currently on sumbicort and xopenex to help my cough and breathing. This condition has affected my life tremendously. I can no longer exercise or even exert myself or I have trouble breathing. Crohns is a devastating disease all the way around. It has changed my life drastically since I was diagnosed 15 years ago. I have been on medication that I know also is doing harm to my other organs. I recently started Humira 3 weeks ago and am praying that it brings me to remission. A crohn survivors dream!

[edavis1209]

I was diagnosed with Crohn's when I was 15 years old.  That was 47 years ago.  I have one operation to remove the infected 4 feet of intestine about 25 years ago.  I have had a cough for the last two years and was told it was acid reflux also.  I finally went to a lung doctor and have found out that I have lost 50% of my lung capacity.  A couple of months they told me I had pulmonary fibrosis so three weeks ago I had surgery to do a lung biopsy.  It looks like the same symptoms as Crohn’s since the lungs get inflamed, heal and then scar.  I have never been on any medication for Crohn’s so I can’t blame the medication.  The lung specialist is making me an appointment with KU medical center so I will see what medication they recommend.

[Icuqt2]

I will also join you guys in the study. When I was 17 I was dx. With Crohn's disease. I'm now 59 and where hasn't the Crohn's been! But I got my real surprise last week. I now have pulmonary fibrosis and theirs a 50% change it is. caused by the Crohn's ,but hold on the other 50% is the chance I t's caused by the medication to treat the Crohn's. It gets you coming and going. Good luck. and don't always listen to your doctors if it feel right in your heart , then it's right. When I got Crohn's they weren't even doing any study's on it. .they've came a long way sense then but my doctor which is a specialist didn't know Crohn's could affected your lungs.

[sm1210]

Thanks for your note. I would be honored to join you in a study if it would help us and others. A laproscopic nissen is when they sew the top of your stomach closely around the top of your esophagus; it is supposed to stop acid reflux. The operation was fairly simple. I was back in my classroom after 2 weeks. I lost 25 pounds which I needed to lose since the Prednisone had worked its wondrous powers for so long. Now I have to eat slower and smaller amounts--or I pay dearly with gas pains--which must now go out the other way.:) Also, I have developed shaky hands. I have always had a slight tremor-usually not that noticeable except when I was nervous. Now  I seem to have it alot. My writing looks like I'm 90 instead of 55. Be glad this is typed.:) Thanks for your advice and I hope you get some relief soon. God bless you also--we could not get through this without Him

[Tuffy4u]

I can relate to the wierdness of your new Crohns location. I had it spead to my female organs. Now that wasnt in any medical journals on Crohns. Maybe you and I will be in some sort of new journals. I hope yours turns out to be something curable soon and not Crohns. It is just such a nasty terrible thing to live with and I hate it for you and me and anybody else that has to live with this and like this. Last night, I even considered checking out I am so sick and tired. We have all tried to come of maintenents while feeling good but dont do it. You found out the hard way. What is a nissen?  I also have gerd and many other maladies but I have never heard of that???? Good Luck God Bless and get well soon. Wow, 5 years since your last flare is great. I havent been in remission for several years now. If you have the chance to go to Mayo, do it. Dont live with the thought that this will go away soon. I mean it might but if I ever had the chance I certainly would take it. My Dr.s have tried to get me to go to Duke on several occasions and I didnt do it. I felt too sick to go. Is that crazy or what?