Managing a Chronic Condition: How Amanda Lives with CRSsNP

“This is not an occasional thing. This is every day.”

Amanda Flowers has lived with chronic rhinosinusitis without nasal polyps (CRSsNP) for as long as she can remember. But her sinus problems have never been the only thing going on with her body. She knows what it is like to live with and manage multiple chronic conditions.

Amanda has ulcerative colitis, asthma, migraines, eczema, and chronic hives. Last November, she also had a stroke. It left her with weakness on the right side of her body. The stroke also put her on a medicine that rules out some sinus treatments completely.

To manage all of this, Amanda sees many different doctors. She has a cardiologist, a pulmonologist, an ENT, a sleep doctor, a doctor for her autoimmune disease, and a gastroenterologist. Her sinus condition is never just its own thing. Doctors have to think about how her other medicines might affect her treatment options.

Amanda has had many surgeries and procedures to try to manage her CRS. None of them were a cure. She shares what it takes to manage a lifelong sinus condition alongside everything else, and how she has learned to speak up for herself at every appointment.

How long have you been living with CRSsNP?

I’ve had this condition for what seems like forever. I’m going to estimate that I was diagnosed about 20 years ago.

How do chronic nasal problems affect your daily life?

Every time I take a shower, every time I eat, my nose is running. This doesn’t sound like a huge thing. But if you want to go out to dinner, nobody wants to be sitting at a table, or with people eating at your table, and you’re blowing your nose.

If I even attempted to eat something with some spices, that would make my runny nose even worse. I mean, it does that without spice, but it’s a lot worse if I have spices. When it’s really stuffy, I can’t taste things as well.

You don’t want your nose running onto your face, especially with makeup on, because you can’t just wipe it away without also wiping your makeup off. It does cause some other issues, such as nosebleeds. And it can affect my asthma.

Does this impact your personal and social life?

My partner is pretty used to the stuff I have going on. I don’t think a whole lot of stuff phases him or bothers him. He doesn’t get grossed out easily, thank goodness.

I will say the time that it has an effect is when sometimes he’ll come up and start kissing me and I say, ‘Okay, wait a minute. Stop. I can’t breathe.’ I have to stop and breathe for a second.

When I’m around other people, I do sometimes feel I have to say something because if my nose is really runny, I’m sneezing, or I’m coughing, or any of those things, I don’t want people to think I’m walking around sick. I tell them, ‘It’s my allergies,’ which there’s at least a portion of truth to that. I don’t want to say I’ve got chronic rhinosinusitis, because people will be like, ‘What?’

Especially after COVID-19 – I mean, I’m guilty too of looking at people like, ‘Oh, stay away from me.’

You have had many surgeries to help manage your CRS, since there is no cure and no single long-term fix. Can you tell us about this?

This is not an occasional thing. This is every day. I not only have CRS, but I also have an enlarged turbinate in my left nostril that causes a lot of stuffiness. It’s just my anatomy. 

About eight years ago, I had a septoplasty because I had a deviated septum. So that affects you being able to breathe as well. I had a lot of drainage, and it was affecting my throat. 

I’ve had balloon sinoplasty, which helped because an MRI showed I had a completely blocked sinus cavity in my cheek.

Then I had the ClariFix procedure done, probably about five years ago. This involves a probe they put into your nose that is like at a sub-zero temperature. It freezes up the nerves in your nose. The way my ENT described the procedure was, he said, ‘Think of it as Control-Alt-Delete. It does not destroy it, but it kind of resets it.’ So you should not have overproduction, and your nose should not be runny and stuffy.

The ClariFix procedure did help a little. My ENT told me that sometimes people will need a second treatment. So probably a year and a half later, I had a second treatment.

Did the ClariFix procedure keep your symptoms managed long-term?

My symptoms bother me enough that I’ve had to go through a couple procedures. I’m willing to do a couple more.

My new ENT said, ‘I don’t even use ClariFix anymore because there’s a newer, better one.’ There’s one for the turbinate that’s enlarged, and the other is for my rhinitis.

There’s one called RhinAer and then there’s one called VivAer. My ENT is going to try to combine them because they each have their own little device and they’re single-use.

So I’m hoping it will get better. But I also don’t get to where I feel like, ‘Oh, this is just going to be this huge miracle.’ Because then you’re really disappointed if it’s not a huge miracle. Not everything is going to work for everybody.

What about medications for CRSsNP? Have you found anything that works for you? 

There is a nasal spray called ipratropium bromide. You spray it up your nose, and initially, at least for me, my nose will run 10 times worse for the first 10 minutes. And once that stops, it dries up. The downside is that it will start to drain down your throat. That is very bitter-tasting.

The nasal spray does help. You can use it 2-3 times per day in each nostril. But it’s not something that you would want to use all the time.

At my appointment the other day, my ENT did say one thing that might help would be Flonase® (fluticasone). I’ve used Flonase in the past. You would have to use it constantly. You might as well just go get the multi-pack at Costco, because you’re going to be using Flonase a lot and notice a big difference.

How do you weigh treatment side effects across your different conditions?

I do infusions of Remicade® for my colitis. I have wondered at times if I stop doing the infusions, would this get better? I don’t think it would. You don’t notice gradual worsening, but an issue with your nose is a potential side effect of Remicade. Is the side effect enough that I’m going to potentially throw my colitis into complete flare? No. I mean, I’m curious, but not enough that I’m going to say, ‘Well, let’s just go off this for a while and see what happens.’ I’m not going to do that.

It’s the risk versus benefit.

In November of last year, I had a stroke. And the reason that I tell you that is I’m on an anti-platelet medication now, which is not a true blood thinner, but it has some similarities to a blood thinner. So my ENT doesn’t want me to do an invasive procedure.

He even said, ‘I’m not worried about the procedure itself if we do the invasive one. I’m worried about bleeding, because everyone has some bleeding. We don’t want yours to be worse.’

How do you keep realistic expectations about treatment?

CRS is much easier for me to deal with or accept, because I have other conditions that are more severe and they have no cure.

I have my good days and bad days. I have some days where I’m like, ‘Oh, this sucks.’ I’ve mentioned it at a couple of my appointments. But I’ll also say, ‘I know other people have it worse.’ And my doctor says, ‘Just because it could be worse doesn’t mean your situation is great.’

You see many specialists. Do you have any tips on how to build a care team that works together?

I see a cardiologist, pulmonologist, and an ENT. I have a sleep medicine doctor, rheumatologist and a gastroenterologist. The GI I switched to was recommended to me by my pulmonologist. My new ENT recommended the same person.

If a doctor does need to reach out, whether it be an email or just sending records, I think there’s definitely a benefit there when they know each other.

What advice would you give someone still searching for answers?

People don’t ever go see a specialist unless they’re told to. But most of the time, insurance doesn’t require a referral. So just go see an ENT or an allergist.

Don’t wait forever because sometimes the doctor will try one thing, give it six months, and then try something else. You might end up feeling the same years later, and that’s awful and miserable.

I hear stories all the time about different illnesses or conditions, syndromes, diseases, where people did not get diagnosed for years. And I’d say a lot of that is they didn’t know where to start. Or the doctor they started with didn’t help much.

You have to be able to tell your doctor everything. Doctors won’t know if you don’t say anything. They only know what information you give them.

Thank you, Amanda, for sharing your story.

For Amanda, there has been no single fix for her CRSsNP. Managing her CRS has meant going through surgery after surgery, procedure after procedure, knowing that none of them would be permanent. It has meant weighing her sinus care against everything else her body is dealing with – from a stroke to an autoimmune disease, and medicines that come with their own side effects.

There is no single turning point in Amanda’s story. Instead, there is an ongoing set of choices. Which symptom should she mention first? Which treatment is worth the risk? And she has to remember to share her full medical history with every doctor she sees.

Amanda’s experience is a reminder that finding the right treatment can take years, several tries, and a lot of persistence. And people managing several chronic conditions often end up holding their own care team together.