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Crohn's Disease, Bronchiectasis, and Biologics
Anyone else here have Crohn's? What is known about the connection between Crohn's and Bronchiectasis? Some think it's an extra-intestinal manifestation of Crohn's in some patients; anyone know of sources for that? Are Biologics used to treat Bronchiectasis itself, or do they make it worse by lowering immunity?
I was diagnosed with Crohn's Disease late 2023, 8 months after a brutal and extended case of Covid. My guts were fine before Covid, as were my lungs. I am now stable on Skyrizi, a monoclonal antibody/biologic injection every 8 weeks.
Early March of this year, despite hermit-like precautions, I got some nasty virus and just didn't recover. Then I got something else on top of it, with nosebleeds and conjuctivitis and a cough that just wouldn't quit. After 2 months of this I got a CT scan which showed bronchiectasis, among other things. Have been nebbing hypertonic saline 2x daily since then, 2x daily nasal lavage, and feeling much better. I'm still establishing my routine for daily lung care.
Having to be on an immosuppressant (Skyrizi) through all this is no fun. I now mask everywhere. I was already something of a hermit; I will continue, intentionally. No longer will I think of keeping my immune system "in shape" via exposure to everyday pathogens. I consider my immune system hopelessly broken. However bad bronchiectasis is -- and it's bad -- Crohn's is also a nightmare, and I do not want those symptoms to return, even if it means masking, isolating, and devoting much time every day to salting my airways.
Just wondering if anyone else here is in the same boat, and how you navigate these waters.
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Welcome to the group. I am sorry you have to be here! I hope you'll find a lot of support and information. There's a search feature in the forum, which I entered the word "Crohn's" and came up with a list of discussions where it is mentioned. I believe within the discussions you can drill down and run another search. I hope you will hear from others with Crohn's.
https://connect.mayoclinic.org/group/mac-bronchiectasis/?search=crohn%27s#discussion-listview
Recently, I learned that 40% of the causes of bronchiectasis are unknown, aka idiopathic. Perhaps this explains why we are all seem so different -- varying degrees of symptoms, cough, sputum production, bacteria we grow and harbor, etc. Yet, airway clearance for all is the cornerstone of managing the disease. It's great that you are on board with airway clearance. The single most important thing we can be doing for ourselves.
Here is a chart from a few years I copied from the NEJM about the various causes of the bronchiectasis.
Causes of Disease in the Diagnosis of Bronchiectasis (Causes-of-Disease-in-the-Diagnosis-of-Bronchiectasis-.pdf)
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4 ReactionsHello!
I have Crohn`s for 25 years, gastroparesis for 8 years, GERD, osteoporosis and Bronchiectasis. Recently, I was diagnosed with thyroid problems with a high possibility of cancer. I am having surgery on June 12, to remove part of my thyroid. Some studies show a link between Crohn`s and BE, but it is not very clear why it happens. Some researchers think that for us with GERD, the silent reflux can be the cause. I use biologics to treat my asthma, osteoporosis and migraines. My immune system is very weak. I do my best to know my risk factors for NTMs and act accordingly. It is exhausting, Crohn`s and gasrtoparesis are already very hard to live with. My diet is very restricted
and the flares come and go. I hope you can find the balance and enjoy life. I do my best to move forward and stay positive. Hugs!
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5 ReactionsHi and welcome, there are a few of us here with autoimmune conditions who have posted from time to time. I suspect quite a few more are here, since bronchiectasis is known to be associated with crohn's as well as other autoimmune conditions. I have Crohn's as well. I had "silent" or basically asymptomatic bronchiectasis since 2012 and then was diagnosed with MAC a year ago and since September have been being treated. I also suspect Covid had a role in the worsening: I had it in April 2020, before there were vaccines. I wasn't terribly sick and recovered without apparent ill effects except for it seems permanently losing my sense of smell! I get all the boosters but still had 3 more mild cases. Even with a lot of extra care, I'm in NYC, I am not going to give up my life so I mask up and get on public transit, and there is always risk. The CT scans over from before and after Covid didn't show change in the BE, but still I suspect my immune system has taken a beating which may have contributed to getting the MAC.
As others have said, the connection between BE and autoimmunity is not well understood. I've had a couple pulmonologists over the years tell me that bronchiectasis -- the actual thickening and damage to the airways -- can start with an autoimmune process as well as from infection and other causes. This is just not well understood yet.
Not glad for what all of us go through, but I'm glad we're here and can share information and experience.
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2 ReactionsThank you for responding, fellow Crohnie! You are dealing with a lot.
Thank you for sharing your experience. I'm glad you maintain an active life in NYC despite these conditions. Do you take any medication for Crohn's? How do you manage it?
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1 ReactionI've been on humira for 8 years & in that time had only one mild flare (by flare standards). No hospitalizations. One ER visit for what turned out to be an ecoli gi bug (we cronies are more vulnerable to all gi bugs :-(). So I'm luckily a humira remission success. Sounds like you've been through it, I hope you stabilize also!
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1 ReactionI'm on humira since 2017 & in remission for most of that time.