Link between Bronchiectasis and Ulcerative Colitis?
I've had Ulcerative Colitis since I was 15. I took Sulfasalazine for many years before switching to Mesalamine in my early 30s and continue to take well into my 60s. About 10 years ago I developed a chronic cough, and after seeing an allergist and pulmonologist, I was diagnosed with Bronchiectasis two years ago. Over the past couple of months, my asthma has also become much worse. My regimine includes nebulizing with saline and albuterol, use of a SmartVest for airway clearance, albuterol rescue breather, and Mucinex.
I have appointments this week with my GI's nurse practitioner and soon at the Vanderbilt Lung Institute. I'm hoping for answers and a treatment plan that protects my UC while also helping me breathe. I'm very active—I swim regularly (which really helps with airway clearance), love to camp, hike, and spend time outdoors. But I've had to reduce my outdoor activity significantly.
Has anyone else had their UC linked with Bronchiectasis? How did your gastroenterologist manage it? Did your lung symptoms improve after seeing an expert who has experience with BE?
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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Welcome to Mayo Connect! I hope someone here will answer your very good questions about BE and UC, as there is indeed a connection between the two. Attached is a table summarizing the causes of BE.
You mentioned that you swim, which is excellent exercise. I would avoid indoor pools, however, as they can be a source of exposure to NTM. Those of us with bronchiectasis are more susceptible to acquiring NTM lung infections. I'm attaching a paper by a PhD researcher who has done extensive work on ways to reduce environmental exposure to NTM.
Jenn Honda presentation - environmental dangers
Causes of Disease in the Diagnosis of Bronchiectasis (Causes-of-Disease-in-the-Diagnosis-of-Bronchiectasis.pdf)
Reducing Exposure to Nontuberculous Mycobacteria (Reducing-Exposure-to-Nontuberculous-Mycobacteria-1.pdf)
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2 ReactionsHello there! There are a few of us here who have bronchiectasis (BE) and also either UC or Crohn's (or rheumatoid arthritis, which also has an association with BE). I have Crohn's -- the other kind of autoimmune inflammatory bowel disease. The Crohn's was diagnosed (firmly) in 2016 or so, years after the bronchiectasis was discovered, but it's hard to know which really came first since I had mild GI symptoms for years. The bronchiectasis was called "idiopathic", asymptomatic, and not treated until I started to develop a chronic cough. Eventually it was my Crohn's doctor at the NYU IBD Center who got me in to see Dr Addrizzo at the NYU BE-NTM clinic. The two of them share a number of patients. Once I was able to produce a sputum sample, I was also found to have MAC.
I had been on humira since 2017. The BE/NTM folks did not want me off the humira and because of the immune suppression, wanted to prevent MAC dissemination, so put me on the "Big 2" (Azithromycin and Ethambutol) plus either amikacin or a placebo (in a study). That treatment did not resolve the MAC but did cause beginning hearing loss so I was first taken off antibiotics for several months, then restarted on a lower maintenance dose since I was still coughing, and since my follow-up hearing test this past week showed continuing hearing loss, I am now off the antibiotics again. While I had been on Humira without significant infections for 9 years -- this past spring I had RSV and then pneumonia along with a couple other non-pulmonary infections. So now I am off Humira altogether to allow my immune system to catch up (so far no Crohn's flares) and off the MAC antibiotics as well.
The pulmonologists actually now think asthma may be a bigger driver of these issues for me (and a new one, or at least newly considered) than BE/MAC. I am hoping to stay off humira and stay off the BE/MAC "Big 2" (or Big 3), see if asthma treatment resolves my remaining mild symptoms, see if the hearing loss reverses or at least stabilizes, and go from there. All this will be reviewed when I see them again in July. The asthma pulmonologist says being a "complex case" has its upside which is that "we talk about you."
Having said all that -- while it can get ridiculously complicated to have these "comorbidities", all of mine are mild and I have excellent care.
YES it makes a big difference to have expert bronchiectasis care. There is now a growing list of Centers of Excellence which are certified as being up on best practices. Hopefully one of our co-BE folks here will post a link but Vanderbilt is probably a good bet.
And beyond that, if you can get your specialists talking to each other (no easy task, I know, even when, for example in my case, they "collaborate") that is important since our coexisting conditions and their meds all interact.
Please keep sharing here if you are so inclined. I, for one, am interested in how all of us with these autoimmune conditions (and asthma) work all the angles!
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2 Reactions@scoop Thanks for the welcome and information!
@lvnl You are so right in that this does get complicated. You are very fortunate to have collaborative doctors! I am hopeful I can get my GI doctor to collaborate with my BE Pulmonologist. Thanks for the response. It helps. I am able to see that I am not alone.
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3 Reactions@scoop I just watched the video you shared on environmental factors and found it to be extremely helpful! Thank you.
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