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I've had my jpouch 22 years. I've had a cough for more than 5 years now - it started as a phlegm-producing cough that only occurred for about 15-20 minutes, about 1 hr. after arising in the a.m. For the last year or so, however, it's occuring all day as well (off and on). Otherwise I'm feeling fine, jpouch is behaving well, fistula/seton is unchanged.

I've had x-rays (clear); CTs (about 5 yrs ago which showed emphysema, but not taken seriously by my GP); pulmonary function tests (again, 5 yrs ago - normal).

These tests were all ordered/reviewed by my GP. I'm thinking it's time to move on, but who to see? It's also my understanding that various pulmonary manifestations can occur in IBD patients, so keeping that in mind, can anyone recommend what type of doctor to see to try to get to the bottom of this? Tests?

Also, anyone else experience lung issues?
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Could it be alergies?

I had alergies to a 'flokatti' bed cover...kind of a long-haired sheep skin cover.

I only coughed at night going to be and in the morning waking up.

Took years to figure out what it was...never figured that it was bedspread!

Some people are litterally alergic to morning ( dew, blooms, grasses...)

Something that you are wearing? New pillows in the house (down filled?)...

Just a thought

Sharon

Could be allergies, but with a chronic cough lasting years without any good explanation, I'd ask about a consult with a pulmonologist.

 

The good news is that your pulmonary function is good and imaging is negative (other than some emphysema- which isn't actually negative). Emphysema, a form of chronic obstructive pulmonary disease (COPD), is progressive and you can lose a lot of function before it slows you down. Even those normal function tests can be misleading. If you started out as above normal, you can lose a lot of pulmonary function and still be in the normal range for your age. A pulmonologist can determine if this is allergy based and treat accordingly. It is quite possible you have a mild form of asthma. And, yes, it can be associated with IBD.

 

Jan

Last edited by Jan Dollar

Thank you my friends.  Called my GP who wanted me to come in (of course), but I talked them into providing the names of a few pulmonologists they recommend, and just made an appt. w/one.  Can't get in 'til March, but I figure since I waited this long ...   I'm also wondering how many pulmonary docs are familiar with IBD-related issues.  Seems it would be a bit of a rarity.

 

I have had a few asthma episodes brought on by allergies many years ago, so that is definitely a possibility, as is the emphysema (I've never smoked, btw).

 

I feel like I'm playing whack-a-mole these days - one problem gets tamped down (eg, jpouch issues), but something else pops up somewhere else. 

 

Thanks again for giving me the push to get this checked out more seriously!

 

 

 

 

 

 

I would think that pretty much any pulmonologist should be familiar with IBD associated respiratory disease, since they are specialists in respiratory disease, even if they do not have much in the way of personal experience. The GP mostly just deals with the typical presentations and when nothing jumps out at them, they send you on your way or refer to a specialist if you remain symptomatic.

 

Good luck!

 

Jan

 

 

My GP put me on meds for acid reflux to see if that was my problem, as well.  They didn't affect my cough at all, unfortunately.  He also tried antibiotics for a possible sinus infection (no affect), and nasacort.  We did not discuss the possibility of IBD-related lung issues, as I didn't really consider that until recently.

An update - I did see a pulmonologist, and after a few tests (including a methylcholine challenge), it appears my cough is possibly asthma related.  No, there's no certainty in the dx at this point, however - we are trying a steroid inhaler (Qvar) which is working great.  Not sure if the cough was in any way related to the IBD process, but am very pleased that there is a relatively easy/benign(?) treatment.  

 

There are other dx possibilities, including bronchiectasis and vocal chord issues, but I'm not sure I'll pursue trying to get a definitive dx - at least for a while - since the steroid inhaler works so well.

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