Changing irrigation tools?

[Hannah]

My Wegener's is limited to my nose and vocal cords, with some redness appearing in my eye during a flare. My nose collapsed last year and I have no septum any more. I have been irrigating with a NeilMed squeeze bottle since sinus symptoms began in 2014.

I had an ENT appointment Monday in which the ENT and I disagreed about the progress of my nose. I still feel like there isn't enough improvement with the crusting in my nose and drainage into my throat, but he think it looks better. As I think about it, I feel like the squeeze bottle doesn't reach certain areas inside my nose. I have a gaping hole between my nostrils, and I feel like the squeeze bottle doesn't reach the top edges or the lower front parts of my nose. When these build up, I'm more likely to try to use my fingers to get them, which increases risk for infection. I didn't think about this until after the appointment, so I didn't get to discuss it with my ENT.

Did any of you change your tool for irrigation as your nasal structure changed? What is best for getting those hard to reach crusts?

Thanks!

[drz]

My Wegener's is limited to my nose and vocal cords, with some redness appearing in my eye during a flare. My nose collapsed last year and I have no septum any more. I have been irrigating with a NeilMed squeeze bottle since sinus symptoms began in 2014.

I had an ENT appointment Monday in which the ENT and I disagreed about the progress of my nose. I still feel like there isn't enough improvement with the crusting in my nose and drainage into my throat, but he think it looks better. As I think about it, I feel like the squeeze bottle doesn't reach certain areas inside my nose. I have a gaping hole between my nostrils, and I feel like the squeeze bottle doesn't reach the top edges or the lower front parts of my nose. When these build up, I'm more likely to try to use my fingers to get them, which increases risk for infection. I didn't think about this until after the appointment, so I didn't get to discuss it with my ENT.

Did any of you change your tool for irrigation as your nasal structure changed? What is best for getting those hard to reach crusts?

Thanks!

The machines like Sinus Pulse (refined by former WaterPik staff) have more volume than the squeeze bottles. The bottles can provide more force for a smaller amount of rinse. I use the machines at home and the bottles when I travel away from from home. Moving your head around allows the rinse to reach different areas of the sinuses and you may need to rinse several times if you have a lot of stuff to dislodge and rinse out. You can also use additives like Alkolol to help clean the sinuses or increase the salt concentration in the rinse. Flonase (steroid) nasal spray or Neil Med Nasal gel sprays can also help heal up bloody crust areas.

Once you attain remission from active GPA the crusts will also usually heal up with regular and frequent rinsing.

[Alysia]

Hi Hannah,

I dont do nose irrigation. No idea why, but when I tried, the water went to my ears and it felt like hell.

I had nose bleeding & crusting and have developed saddle nose from 2008 until 2013. The only thing that stopped it was when I started rtx.

I think that your nose issues means that your wg is still active or smoldering and that the treatment that you get for it is not enough.
What meds for wg are you taking ?

[me2]

My most recent change in irrigation is to get a sinus culture to identify possible infection. I seem to have had infection along with the weg crusting more than I thought. Then get an antibiotic powder to mix with the sinus saline.
I use two Neilmed bottles. The first bottle I rinse with just the Neilmed solution. Take your time. Going slower is what will get the harder to get to crusts. Then with the second bottle mix up the saline and the antibiotic powder. I also add budesonide steroid to the second bottle to calm inflammation . After just a few days I usually get some improvement from this program. Rinsing frequently and thoroughly helps.

[Lilly]

Hi Hannah, I have had wegeners for 27 years. I have "limited wegeners", and my sinuses were hit hard. They have always been a real problem. I even had 2 "sinus scraping surgeries" after having the disease for 15 years. I have used many different ways to keep my nose clean over the years as my sinuses have changed. I have used NeilMed also, and it worked well for me. But now, my sinuses are pretty much gone. I also have the hole in my septum, and its more difficult to clean because of the way my sinuses are so "open" now. The way I clean my sinus cavity now (I still have crusties and buildup will block my breathing) is by using "Simply Saline" made by Arm & Hammer...its a nasal mist. The mist goes far, and completely moistens the inside of my nose. I will mist my nose for about an hour or so, just getting everything softened up. Then I use Q-tips to gently remove the crusties. I usually see my EENT every 2 or 3 months, and he uses an instrument to clean out the very back of my nose where I cant reach. I wish you luck! Blessings...

[Alias]

I follow a program similar to me2. Normally I just rinse with saline using the NeilMed bottle. When I get more serious blockages or fear I have an infection developing I break out the antibiotic and the budeseonide. In my case the antibiotic is Bactroban. They are both prescription meds, and I believe this use for them is "off label", meaning it is not what they were designed for, but they are effective. It's not clear if you have active disease causing you problems, or if it's "just" damage from what you've already experienced. In my case it's the latter.

[annekat]

My Wegener's is limited to my nose and vocal cords, with some redness appearing in my eye during a flare. My nose collapsed last year and I have no septum any more. I have been irrigating with a NeilMed squeeze bottle since sinus symptoms began in 2014.

I had an ENT appointment Monday in which the ENT and I disagreed about the progress of my nose. I still feel like there isn't enough improvement with the crusting in my nose and drainage into my throat, but he think it looks better. As I think about it, I feel like the squeeze bottle doesn't reach certain areas inside my nose. I have a gaping hole between my nostrils, and I feel like the squeeze bottle doesn't reach the top edges or the lower front parts of my nose. When these build up, I'm more likely to try to use my fingers to get them, which increases risk for infection. I didn't think about this until after the appointment, so I didn't get to discuss it with my ENT.

Did any of you change your tool for irrigation as your nasal structure changed? What is best for getting those hard to reach crusts?

Thanks!

I guess everyone's nose is different but mine is collapsed, too, and in fact, most of the bony structures of my sinuses and inside my nasal cavity have eroded away. Still, the saddle nose is the only thing externally visible. Now there are much fewer places for mucus to be produced and collect and the main one is around the top of my nose, and the nasal rinses get that out pretty effectively. There isn't any real crusting in that area, just globs of thickened mucus, smaller than before. There is some small crusting near the openings of my nostrils that is hard to dislodge, but I never felt like the nasal rinses got at that area much anyway. And I still do get the dripping from the back if my nose into my throat, with the resulting coughing. I find that NAC, or N-Acetyl-L-Cysteine, an amino acid taken as a supplement, thins the mucus and helps a lot with dislodging it and getting it out of there, and makes it easier to cough up out of the throat.

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[Lilly]

Hi Anne, I have written down the amino acid you take as a supplement...I think you and I have about the same amount of destruction in our sinuses, by the way you describe yours now. I could definitely use something to help the mucous that builds up in my throat and causes me to cough all the time. And I was wondering, unless I am on a high dose of steroids (during a flare) I tend to have a lot of mucous, especially in my ears. Do you have that problem? And if so, does that amino acid help that? Thanks Anne Blessings and love

[annekat]

Hi Anne, I have written down the amino acid you take as a supplement...I think you and I have about the same amount of destruction in our sinuses, by the way you describe yours now. I could definitely use something to help the mucous that builds up in my throat and causes me to cough all the time. And I was wondering, unless I am on a high dose of steroids (during a flare) I tend to have a lot of mucous, especially in my ears. Do you have that problem? And if so, does that amino acid help that? Thanks Anne Blessings and love

Hi, Lilly. I have various problems in my ears but never felt like there was a buildup of mucus in them. Are your eustachian tubes functioning enough to drain it out that way? If so, I think the NAC would help with thinning the mucus so it would drain. I used to use Mucinex or liquid guaifenisen to thin mucus but someone on the forum suggested NAC and I think it works much better if taken regularly. It may take a week or two to notice a difference. I get mine at the Vitamin Shoppe or Super Supplements, and it can be found online. I have 600mg capsules and take one twice a day, morning and night. The bottle will say other things about what it is good for, but I know others who can attest to its mucus thinning ability. The good thing about having no sinuses is, according to my ENT, we are no longer subject to sinus infections! Best to you!

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[Lilly]

Hi Anne, Well, my ears have been pretty easy to maintain in the last 5 years, I would just go to my EENT when I had an ear infection, or pressure in my ears, and he would suction out the infection and put a tube in. That was working great, until the Christmas of 2016, when my tube was stuck sideways in my ear, and I had a quick out patient surgery where my EENT removed the stuck tube and tried to suction out the "fluid"....but he said it was like glue...very thick. This worried me, and I could tell it worried him too, because he acted surprised about it. But I had my tube in my left ear, and also replaced the one in the right. This was not a happy ending, as almost immediately (within a week) my ears felt like I had cotton in them. If I slept on my right side, I would wake with my right ear pounding, and clogged up. During the day, it would go back and forth. I went back to my EENT, and my tube he put in was out in the left ear, and there was a hole left. Nothing else he could do. I asked him if he could suction out whatever was blocking my hearing and causing me pain, but he said there was nothing there. So I guess whatever I am feeling in my ears is not in the middle ear. I am going crazy because my hearing is so effected by this, and I have constant ringing and white noise and a roaring sounds in both ears. I was just about to try mucinex, to see if I can get some relief, then I saw what you wrote. I may get some at the Health Hut, a Health food store my Mom and sisters and I get all our healthy items from. Sorry so long, I am really having a hard time thinking straight. I'm sure I will get used to it if I have to, but having noise in your ears constantly, and trying to focus on anything is difficult for me. My Mom and I are working on trying some things that may help. Thank you Anne, Oh, BTW, I found your pottery on Instagram. You are very talented!! I Love your style....Blessings and Love,