This post may not be for everyone, but I know my CFers and their spouses will know what this is all about: those CF smells.
We have a lot of them. Some are bacterial and you can smell it around our noses and mouths, some are medicinal and they build up and ooze out of our pores or exit in the bathroom right next to someone else, while others are just obscene bodily functions. Am I right, CFers? Am I right?
Here’s my run-down, and I’d love to hear if you all have different smells or different sources that create them.
- Sweat – after enough time letting things grow after exercise or just a hot day, I take on a sweet, onion-y smell. It’s rather similar to a Subway sub with onions or a Philly cheesesteak sandwich. It’s not bad, but not something you want to smell all day, you know?
- Sinuses – I get 2 smells out of my nose. One, I can smell, and I call it “wet dog” smell. That’s what happens when a certain bacteria up there takes over and signals that it’s time to get sucked out again. The other, Beautiful can smell, and she calls it “tomato soup.” We are pretty sure that’s Pseudomonas creating that smell, and it’s most prevalent in the morning when she wakes me up.
- Lungs – I also get “soggy Corn Chex” in my lungs with good spasms that bring up gunk that smells like a breakfast gone bad. Another sign that I need more antibiotics. I’d say the hemoptysis situation is more of a taste than a smell, but it does have its precursors before it presents itself in a more outward fashion, as I got to test once again in California.
- Skin – after a few days on IVs, I begin to smell like my medication all over. Just sitting on the couch and I get a whiff of Zosyn or something, only I haven’t had my does in 3 hours.
- Number One – the docs always put me on tobramycin and one other med. That other med, not matter which one, does horrible things to my fluid excretions. When I was working in the office and would go to the bathroom, if someone else was in there, I’d walk back out and go to another one, because the smell is that strong. I didn’t want to have to get drug tested because I was on IVs – who knows what would show up in my tests?
- The obvious: Gas – CFers almost universally have bloating issues. With how much intestine I had taken out at birth, I really experience bad bloating, but it’s gotten better since using Zenpep. My youth pastor growing up in Ohio called me woodsmoke – one of my many “flavors.”
Do you have different flavors or sources of the same flavors as me? This is definitely something that binds us. Parental stories not appropriate for mixed company will be moderated, as “poop” has been a favorite topic recently.
Elliott is 1yr and yes he has the obvious nappy issues but his urine is so strong. When it hit summer and he started sweating a lot more no one had warned us of the body odor issue as it wasn’t in any information the hospital had given us.
Never in my life had I met a baby that had B.O. I was at first very worried and also embarrassed but the CF nurse explained it.. but I still have no idea how I can help him smell less.. I am clueless in this issue.
Some days he too smells like onions but mostly he smells of the sea.. we have to wash and bath him twice to three times a day with the heat
The sea smell is a given – that’s just CF saltiness and goes pretty well undetected unless it turns sour like anyone who exercises and then doesn’t shower. We live in South Florida and don’t need that many showers. ๐
Just wait until 13 and the “I forgot my antiperspirant” starts!
It’s probably obvious, but the main smells I remember from your childhood were the toby smell and the gas. Such great invitations for cruelty from other kids. One of the things I love most about Kristin is that she loves you so much that those odd (and sometimes nasty) smells didn’t keep her from committing to spend the rest of her life with you.
Thanks for posting this, FB.ย My husband is always telling me “the air coming out of my nose” smells REALLY bad.ย I always assumed this was CF related.ย Its just always “nice” to have confirmation of symptoms through others.ย Just another reason why I love the blog world…
I concur. If we don’t write about the weird or disgusting things we experience, we might all live life feeling like freaks or in fear that something is going terribly wrong with our particular brand of CF. Breathe easy.
I have to agree with the gas smells. I have never noticed any of the other smells, you have mentioned. I would also add beside the extreme smelliness of gas , BM’s also have rather pungent smell at times. I love to read your page, especially when I can relate to your CF posts.
We have a strict “close the door all the way when you are done” policy and I use the lobby facilities for that function when sharing hotel rooms with my new family. Lessons learned with time and trips.
You call it tomato soup, I call it a marinara bath.ย I try not to fix overly acidic foods because we thought it was J’s heartburn/acid reflux being affected.ย You mentioned Pseudomonas.ย Can you expand on that?ย How is that smell and Pseduo related?ย J’s had that smell for the past few days really, really bad.ย Worse when sleeping, but definitely noticeable.
Gas- yes!ย Not nearly as bad since we moved and our lives are less hectic and I’ve been able to cook at home.ย Less processed foods and grease equal less turning on a fan.
Bathroom- A home with at least 2 toilets is a blessing.ย Again, eating at home has reduced the frequency and duration of said visits. Most of the time J will avoid public restrooms for that unless absolutely necessary
Tobi is foul.ย IV’s are too.
J too smells like an onion.
I never would have imagined that I would be able to stomach some of the smells, but love makes us do crazy things I guess ๐
Get the P.A. completely under control and you’ll notice the smell goes away. It appears with a flare-up or prolonged gunkiness. I’m always in a battle between gram-positive and gram-negative, and each has their smell. One is tomato soup and the other is soggy Chex. It’s an amazingly simple diagnosis technique that I wish more doctors knew about. I even get strange looks from them, but Sue knows I know what’s going on when we describe the smells.
Thank you very much. Oh and he started on Zenpep a few weeks ago.ย Much improved over the Ultrase.ย I don’t think he is taking nearly as many capsules of Zenpep as he was of the Ultrase.
Yes! Zenpep was a HUGE improvement for me. It’s also free AND we get Amazon points.
I found out today that he tested positive for PA in September, but the office he was going to never called with the results.
I’d be surprised if he didn’t culture that at this point in his life.