Well, I think your pulmonologist was just trying to state in the most simple of terms. You really don't have UC in your lungs. You have one of the many extraintestinal manifestations of UC, which happens to be a pulmonary complication. It is not very common, but is well documented. The more typical extraintestinal manifestations are arthritis, uveitis, pyoderma gangrenosum, etc.

Here is a link to a good article for you:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4188901/

Jan

There was a bit of discussion about this here in 2015. Here's the link:

https://www.j-pouch.org/topic/u...9#468412848437254869

Thanks  Jan and Scott for information 

GRACEB,

I too believe I have UC complications in my lungs. I have been hacking up purulent green sputum daily since this January. My jpouch surgery was 6 years ago. Basically the classic symptoms described in the link that Jan sent above. I'm quite frustrated  since my beloved GI insisted it was unrelated. I have been put through the ringer with tests and have settled with a lovely Pulmo who says he has "dozens of UC patients with pulmonary issues." I have been told I have very mild Bronchiectasis. Next week should finally rule out the off chance of an MAC infection and then I hope to start a steroid inhaler to get it calm down. 11 months of coughing has taken it's toll on me. I had to take oral prednisone for 3 days earlier in the year for strep throat and that was the only thing that almost knocked the cough out, so I am really hopeful that an inhaler will finally give me some relief. Gotta be honest, these symptoms and the idea of having yet another chronic disease has me pretty stressed out, especially after being well for the 1st time I can remember since my early teenage years.

SCOTT F I would love to hear more about your experience and how you are doing? Did you have similar symptoms? Has the inhaler continued to control your symptoms?

I should add that I had exercise induced asthma as a young teen, and have always been "phelgmy" and prone to bronchitis.

I'm still doing fine on Alvesco, thank goodness. I have to get it approved by insurance every year. The other steroid inhalers simply didn't do the job for me (Pulmicort and several others). In my case there's a bit of asthma, which could be the whole story, or it might be all UC in the lungs, or a bit of both.

And you were having the whole purulent green sputum thing as well or just the cough? Wondering if I should try Alvesco. Qvar was mentioned. I'm glad you are doing well! Hopefully I can get the same relief!

There was plenty of sputum, and it caused wheezes when I exhaled, but mine wasn't as nasty or colorful as you're describing, Jovic.

Wow!!!  My pulmonologist never mentioned any of this when I was diagnosed with Bronchiectasis several months ago.  Treating the symptoms and trying to stay free from pulmonary infections have become my primary goal.  It is all trial and error.  Thank God for the internet because as a result of logging onto a forum for others who have Bronchiectasis I was able to learn about a very common treatment others seem to include in their daily routine.  My doctor never mentioned it and did tell me "they" don't typically prescribe it.  "They" meaning physicians on the west coast.  I convinced him to let me try it.  It took three months for him to find a pharmaceutical source for the product I needed.  The product?????  3% Hypertonic Saline Solution to be used in a nebulizer!  Salt water!!!!!   I've been using it religiously twice a day in my nebulizer and have been experiencing so much relief!  in addition, it is so much easier on the body than Albuterol!  I think I need a new pulmonologist!

Hey CeeeeCeeee, so inhaled steroids have not worked for your Bronchiectasis or have you not tried them? I have read that they are very effective when UC is involved or related. Has the saline decreased your daily sputum production or just made it easier to get things cleared out of your lungs? I have an appointment with my Pulmonary doctor coming up so I want to run the saline option by him. That's amazing by the way. I would initially  think that nebulized saline would irritate the existing bronchial inflammation. However I also have sinus issues and have found that a daily Nielmed saline sinus rinse both prevents infection and can also help to clear one up. So it makes sense I guess to use the same treatment for the lungs! Amazing! I had nasal polyps earlier in the year and used a nasal steroid to shrink them. I am being told I have nodules in my lungs now and possibly minor Bronchiectasis (no infections found over many months) which may be causing or contributing to my daily chronic cough with purulent yellow/green sputum. I wonder if a combination of inhaled steroids and the hypertonic nebulized saline might actually calm this nagging cough down! It's been 10 months straight of this every day. It's exhausting!!!

I've been diagnosed with Bronchiectasus too! It's mild but I have to keep on top of it. 

I was diagnosed about a year after my surgery and my lung specialist confirms that there is a correlation to having the pouch surgery and developing bronchiectasis but no one knows why. I think it's that there's a reason your body is enflamed and once one organ disappears it moves itself to another organ. 

I currently am on no medication (I've been pregnant or nursing for the last 3 years and the progesterone spike puts it into remission) but I've heard great things about salt pipes, salt caves (if you live near them) and I'd like to try that salt nebulizer or even a salt lamp.

Lydia

I just ordered a salt pipe! I remember getting mld relief from this cough when I was at the beach for 10 days this summer.

I received excellent news today from my Pulmonologist! I do NOT have MAC which is a huge relief. I have no infections whatsoever, and sort of borderline pre-Bronchiectasis if that makes sense. Actually inflammation in my lungs causing this mucus, but little to no damage. My Dr. feels this is absolutely a pulmonary manifestation of UC (my eczema is flaring like crazy right now as well). With no coaching he suggested we start me on a mild dose of inhaled steroids and go from there so I am very hopefull. He had great things to say actually about the salt pipes and nebulized hypertonic saline but feels that's a next step. He described auto-immune diseases like a Polaroid picture. Details emerge slowly and the full extent doesn't emerge for many years sometimes. I'm nearing my 20th year since my first UC actually. Anyway, just wanted to share the news since I finally have some encouraging news about this darned cough after 11 months straight!

Jovic.......I have been on Advair and Atrovent for quite some time.  I am not on Prednisone normally but have been given it if my breathing problems escalate.  It's been awhile.  Meanwhile, I now swear by nebulized saline.  I use it first thing in the a.m. along with my Hil-Rom vest.  Between the two treatments it loosens mucus and allows me to easily get rid of it.  I follow this with my Advair and Atrovent treatment.  Then, in the late afternoon, I repeat the vest and nebulizer.  I finally sleep all night without having to clear my lungs!  I never feel congested!  It has been a miracle.  Not only has this saline treatment been beneficial, it is also very, very cheap!

I've had coughing issues for years. Fortunately, an ENT suggested likelihood of gastric reflux. I got an Acid Reflux Wedge Pillow and the coughing cleared up completely. Below is some information that might be relevant to those in this post. Note that all I did was add the pillow. No meds. Hope this helps! 

Abstract 

Background Bronchiectasis is a progressive and fatal disease despite the available treatment regimens. Gastroesophageal reflux (GER) may play an important role in the progression of bronchiectasis. However, active anti-reflux intervention such as Stretta radiofrequency (SRF) and/or laparoscopic fundoplication (LF) have rarely been used to treat Bronchiectasis.

Case Presentation Seven patients' clinical outcomes for treating GER-related deteriorated bronchiectasis were retrospective reviewed. All patients were treated by SRF and/or LF, and had follow-up periods ranging from one to five years. Typical GER symptoms, respiratory symptoms, medication consumption and general health status were assessed during the follow-ups. At the latest follow-up all patients were alive. The typical GER symptoms disappeared in five people and were significantly improved in the other two. Two had complete remissions of both respiratory symptoms and bronchiectasis exacerbations; four had significantly improved respiratory symptoms to mild/moderate degrees as well as reduced or zero bronchiectasis exacerbations, which allowed them to resume the physical and social functions; one's respiratory symptoms and bronchiectasis exacerbations were not much improved, yet she was in stable condition and satisfied with the results.

Conclusions Potentially, GER plays an important role in some patients with bronchiectasis, and active anti-reflux treatments can be beneficial. Future clinical studies are suggested to clarify GER's role in bronchiectasis and to further determine whether anti-reflux interventions for GER can improve the outcomes of patients with bronchiectasis.