Lung Involvement

[malorymug]

I guess I knew this post was coming, and it is better than TB, but it is nearly official, my boy's crohn's disease is affecting his lungs.

We have to rule out two fungal infections, histoplasmosis and coccidioidomycosis, and I pray we rule them out. Can't stay on biologics with fungal infections.

The plan is to monitor his lungs with 6 month ct-scans. If the nodules get bigger, surgery, if they stay the same, we continue to monitor. And hopefully, remission will include the lungs and they will get smaller.

I really really wanted the pulmonologist to to think it was ridiculous that we were there. I barely remember what it is like to go to an appointment where they just check things off and say "all good".

 

[Farmwife]

Hugs, hugs and more hugs.:hug:

 

[Maya142]

Really sorry to hear this. Didn't even know there are lung complications with CD. You're both in my thoughts :ghug:

 

[Sascot]

Sorry to hear that, hope he doesn't need surgery. Hugs

 

[Jenn]

So sorry to hear! Nodules can be a risk from the MTX, right? Would they shrink if he stopped taking it?

 

[CarolinAlaska]

I'm so sorry. My daughter was diagnosed with asthma in the past year, but I don't think they did imaging. How did they find this on your son? How did they know to look?

 

[kimmidwife]

Very sorry to hear! How do they rule out the fungal infections? Is it just bloodwork?
I did recently read that those infections are. Ore common in certain areas of the country.

 

[my little penguin]

I think sudsy had this issue with one of her girls
I will tag her
My kiddo has had asthma since age two but nothing has shown up
On any of the chest X-rays he has had in the past prior to dx

 

[malorymug]

The way it was described to me is that CD is a systemic inflammatory process, and because it is systemic it can affect many different systems. Lungs are sensitive to inflammatory processes.

I guess what we call EIM, extra intestinal manifestations.

 

[malorymug]

So sorry to hear! Nodules can be a risk from the MTX, right? Would they shrink if he stopped taking it?

We are just two weeks into the MTX and the lung views were done prior. But thank you very much for bringing this up. I will bring it up with the doc. I would hate for MTX to make it worse.

 

[malorymug]

I'm so sorry. My daughter was diagnosed with asthma in the past year, but I don't think they did imaging. How did they find this on your son? How did they know to look?

The only reason we did imaging was to check for TB prior to the remi infusions. He has no breathing troubles, just another thing to worry about. I wonder if it would be beneficial for your daughter to have a quick picture?

 

[malorymug]

Very sorry to hear! How do they rule out the fungal infections? Is it just bloodwork?
I did recently read that those infections are. Ore common in certain areas of the country.

Yes, just bloodwork. Right, one is common in the Mississippi valley (never been there) and the other is common in the southwest. We lived in San Diego most of his life and do lots of desert camping. So maybe?

 

[DustyKat]

I am so sorry to hear your lad may have another thing to deal with malorymug. :ghug:

Sending much luck that the tests return benign results. Good luck!

Yes, although not common there are a few pulmonary EIM’s of IBD. :voodoo:…

Pulmonary manifestations of Crohn’s disease

Thinking of you. :heart:

Dusty. xxx

 

[malorymug]

Just finished our 6 month check up on the lungs. The nodules are still there and haven't changed in size or number. Doc is still certain that they are crohn's related. So we will do yearly ct scans until there is a change.

 

[Sudsy]

Ooh--so sorry, I never got the page, MLP. Hi, Malory. Sorry we have to be in the "EIM" club together ;(. For my dd, her necrobiotic pulmonary nodules reacted positively to Remicade, after being resistant to six months of prednisone (which is evidently rather rare. That combined with her young age got her lungs "famous" and written up in the New England Journal of Medicine as a case study
http://www.nejm.org/doi/full/10.1056/NEJMcpc1410938. Whee)

It's so good to hear that his are at least staying steady and not increasing (hers increased the moment she weaned off prednisone).....Thankful for *some* things, eh?

Just fyi for others: my dd's pulmonologist says (as one might expect) that there are pulmonary manifestations of Crohn's more often than one would assume/most GIs assume. He says it's becoming more common for GIs to refer new patients for a pulmonary work-up to ensure nothing is going on/get a baseline. He says that, in the near future, he feels that a pulmonary referral will be standard with all newly-diagnosed cases of IBD.

Hope your ds feels well and stays well. Hang in there!!!!!

 

[kimmidwife]

Sudsy,
Thanks for sharing that. How do they get a baseline? MRI? X-ray?

 

[Sudsy]

When I brought my other daughter to be checked out, they did pulmonary function tests (possible chest xray, too, but nothing more invasive or full-of-radiation than that). (I had brought my younger dd in for possible asthma a few years before the pulmonary issues started re the Crohn's and it was SO helpful to have those baseline PFT's. The doctor said that, otherwise, he wouldn't have known that her PFT's had, at one point, been normal)