Lung disease related to IBD

I also have bronichiectasis. My family has a history of both UC and lung disease. I'm doing ok, though. However my dad lived to 91 but died of lung disease and not UC. Dr. Bo Shen told me that it is somewhat common for those of us with UC to also have lung disease. There are some research papers on this issue

Joanne, thanks for your reply. I have talked to Shen about this issue. Not much data as far as possible treatment strategies . Would love to hear if you have any specific information.  Leon

Leon, I do have a pulmonologist and I'm doing ok. Not on any treatment, however, I do think, based on my family history, that there is a genetic link in lung disease; my dad, his sister, me, my sister and brother. My dad, brother, daughter, and both sons have IBD. My daughter also has chronic bronchitis and UC.  I supposed it also could be related to, or exacerbated by,  the fact that we all lived in large metropolitan areas, too. There is a study out there I read several years ago about the link between IBD and COPD. Dr Shen told me many years ago that many of his jpouch patients also have bronchiectasis. I think I found the article on COPD and UC on the NIH, Library of Medicine data base online.

Thanks Joanne. Will investigate.  

Hi lrdo, how are you doing? I've recently been diagnosed too. Would love any insight!

Hi Maddy.  I’ve struggled for years to find treatment for my bronchiectasis related to my UC.  18 months ago I tried Skyrizi. It has absolutely changed my life, my pulmonary symptoms have improved dramatically.     Tell me more what you are dealing with?   Let me know if you have any questions.   Leon

@lrdo Hi Leon, thanks so much for replying.

That is brilliant to hear you're doing better! And ultimately gives me some hope!

I have been diagnosed with mild bronchiectasis via CT scan, assumed to be due to my UC. J-pouch surgery was roughly 15 years ago.

I've been given a steroid inhaler and also do airway clearance nightly just to keep on top of it. The inhaler has definitely helped somewhat as the cough is now less present, but not gone altogether. I also struggle with breathlessness from time to time too, not enough to severely inhibit anything in particular but enough for me to notice.

Healthcare is fairly split up in the UK and it's really hard to get 'in' with someone who understands the complexities of it all!

Would appreciate any insight or how you got to a biologic in your case. I've asked about these but been told it's mild and therefore not needed. I disagree as it is clearly a result of uncontrolled inflammation that needs treating. Been a nightmare to even get this far!

Thanks so much,

Maddy