Couple Questions - Another one for Jack :)

[Brooke]

I read in a previous post about colon involement? What are symptoms of that? How is that treated?

Jack - I remember you saying that you can not sleep for more than 2 hours with out being woke up by a cough. Do you cough a lot during the day also or mostly at night?
The reason I ask is that I cough a lot a night - I think it is from laying down. I think I will try and sleep in a recliner to see if that helps me any.

[JanW]

I can't remember Brooke -- did the docs ever figure out why you are coughing so much?

What I've read on Dr. Google seems to indicate that WG in the colon presents sort of like colitis -- bloody diarhhea, cramping, constipation and the rest of it. Uncommon in WG though, as the most common presentation tends to be in the ELK formation (which is how med students remember in). E(ear, nose, throat), L(lung) and K(kidney). Everything else is rarer still in an already extraordinarily rare disease, but I have even read about WG being discovered after biopsy of a breast lump! Its a systemic disease -- can literally be almost anywhere.

[Jack]

I suspect that I have a similar tendency to cough day or night, but it is different when I go to bed. At night, I tend to wake every few hours and cough for a short period. During the day, I may go for five hours without coughing, but then have a giant coughing fit that is hard to clear! I also find that I have a coughing session if I change position - sitting to laying or turning over to lay on my other side.

[Brooke]

Jan - I just had a recent CT of my chest done and that looked good. I think the reason I cough is due to the Wegener's. My docs also say I have asthma, I don't know if they still believe that or not but I think it is just from the Wegener's. Thanks for the info on the colon part.

Jack - Have you tried to sleep in a recliner? I am wondering if you try to sleep upright if that will help. I am the same way, I can go almost all day without coughing - even if I am a little wheezy but shortly after I am laying down I start coughing. I am thinking my sinuses are draining or something because I don't know why it would be worse at night.

[moyan]

Hi, since a year back I sleep in my recliner. Much easier on the breathing even though I don't cough, but have nose backdrop (?)

[JanW]

And they've ruled out any kind of throat (subglottic, tracheal) involvement? Very common to cough with those because you are always trying to clear your (very small) airway. You wouldn't have a definite on airway involvement unless you've been scoped, or been CTed in the throat (chest will usually only get the lower part of the trachea.

[Brooke]

Jan - Yes I have subglottic stenosis, I didn't realize that causes you to cough too.

[elephant]

Jan after reading your posts about your SS, I asked my ENT about checking my throat ( subglottic and tracheal) and he stated that I would of known about it when I did your sinus surgery. The anesthesiologist would of told him if they had a hard time traching me. So I am relieved to hear that.

[JanW]

It's true that if they needed to intubate you that they would have encountered resistance had you had any scarring. It's just also a good idea that since you've had sinus involvement, you stay on top of the throat as well. He can actually just go a little past your sinus passages, which they do anyway, and see straight down.

[JanW]

Brooke -- that's right, I remember now that you are the person who is about at 80 percent in terms of windpipe. Absolutely that can make you cough (and constantly!). What I would wonder is, if you are suddenly experiencing increasing coughing, whether your stenosis is actually getting worse. When is the last time you had it checked? I would worry that something has gone unstable -- scar tissue can shift for instance, which is one reason why the operate to when it gets as bad as mine. I would have the ENT investigate..are you finding yourself any more short of breath? What you said about sleeping in a recliner rather than lying all the way down -- sure it's not a little harder to breathe when you're flat?