Nasal discharge

[ingemlb]

Hi Everyone. New to this forum so not sure if this is the right place to pose questions. I am blowing out lots of mucous from the sinuses and two weeks ago when I saw my ENT specialist for biopsies he gave me the sinus rinse kit however been a bit difficult here in hospital to get the warmed distilled water so after asking few times and not getting anywhere I gave up and in any case I don't have any problem blowing the gunk out but was just wondering if the rinses are important and would clear more of it and do they help with healing? Anybody here use Sinus Rinses on a regular basis?

[pberggren1]

I am absolutely disgusted that they will not give you warm distilled water so you can mix your solution for rinsing your nose.........:angry:

Yes, the rinses help immensely to help get the crusts out. Most people experience a great benefit to daily nose rinses. I am sorry you are having bad care in this hospital.

[ingemlb]

It's not all the hospital's fault. I didn't push very hard as I was not quite with it and didn't realise the rinses would make so much difference. I will get onto it and ask especially as I am now in a private room with my own bathroom it should be a lot simpler :) Every time I have asked for it they did say they would look into it but the nurses got dragged away on other issues. I ended up in an Oncology ward as there was a shortage of beds when I arrived. They were overloaded with gastro cases who had to be isolated so the hospital has been stretched to the limit and on the whole has been extremely thorough in all the tests they have done to get to the bottom of what was wrong with me. Thanks for getting back to me Phil. I will insist on the distilled water now :) Inge

[mishb]

Absolutely the rinses are important.

When I was first in hospital I had trouble getting the water I needed, so I used to get some plain boiled water when the tea lady came around and waited for it to cool before tipping it into the squeeze bottle.
When that wasn't enough, I just used the nasal saline spray until I got back home.

[ingemlb]

the hot water here comes out of some kind of filter tap not sure if it actually gets to boiling point which is why I wasn't that keen on using it but that was one idea i had. Will see what I can manage. I could get some of the spray I guess which would be simpler. Thanks Michelle :)

[mishb]

I remember years ago, my grandmother used to take her own berko into the hospital.
She said that they never brought her enough cups of tea, so she boiled her own water and made her own :lol:

[ingemlb]

Hi Michelle. It's often the most obvious things that don't occur to you. This morning I just put the hot water into a cup then microwaved it. I use the microwave to sterilise the bottle so why not the water? My left foot and leg were very bad so I had to limp a few times to the tiny kitchen but managed to get it all done now waiting for it to cool. On the way back to my room I thought why don't I just get my husband to buy me a small kettle for here? Could have solved the problem from last Tuesday which is when I got my own room. So then I saw your message. :) Thanks for all your support Michelle. Guess my brain is a bit slow to engage these days! Inge

[windchime]

Why not have your husband bring you a gallon or liter of distilled water?

[ingemlb]

yes that's another way to solve it now I found the microwave :) Thanks Cindy.

[annekat]

I wonder if all, or most, hospitals are the same. I was only in the hospital overnight and did not have access to good water for sinus rinsing, either. The tap water in my room was barely warm, which seems crazy, but maybe they don't want people scalding themselves. I got the nurses to bring me some warm water, most likely not distilled, but it was not satlsfactory. I also did not get to do my routine of inhaling steam from a bowl of hot herbal water, which would have given me much relief. Their whole attitude about any meds, inhalers, etc. that i brought with me was crappy. They just wanted to charge me for their own Tylenol or whatever at exhorbitant prices. This was all before they knew I had Wegs. I was getting nebulizer treatments, which were OK. But I was so uncomfortable not getting to do my usual routines. If I had been there any longer than one day and night, I'd have had to have some words with someone.

[ingemlb]

Hospitals are not very good at handling chronic conditions. They are great for fixing an acute crisis and their main aim is to get people up and about and out the door as far as I can tell. It's useless coming in with herbal treatments or vitamins or anything else that improves your general health. I found this also when my mother who was on something like 30 plus meds including supplements was hospitalised. I ended up with a separate list of prescription drugs she HAD to take and we left home anything she may be able to do without for a few days. Also the diets are not really geared to help in the long term. I guess its more crisis control. So I have learnt to hang in there and try and fit in as best as possible then get back into the healthy options on discharge. This time it's a bit tricky because I am here for four weeks already.
One example is at home I always include some raw salad type of food lunch and dinner times. Because of my tongue ulcer I can't eat the salads here and they are giving me mashed veggies which I am very grateful for. However the other day I suggested they take the salad and vitamise it so I could drink it like a bit of a juice. They can't accommodate such an option. They are only allowed to vitamise cooked food. Then I figured maybe raw veggie juice once a day would be another option. That too is off the menu even though this hospital has one of the most extensive menus I have come across. As far as cooked food goes I can get a huge number of sloppy soft options. But I was beginning to worry about lack of vitamins. the only raw food I get is bananas so am eating those 2 or 3 times a day. As I can manage to squash those on my other side of the mouth without upsetting the ulcer.
They are probably concerned about food poisoning. Cooking makes food safer from that perspective.
So the only options are to find relatives /friends who could bring in the other things you can't order and that is not always possible or convenient.
Anyway hopefully i will be home again next week :)
As far as charging goes that is not an issue here. I am luckily still insured for private care and so I get all medications included and covered by my health insurance for which I pay a small fortune every month. The time will come when I won't be able to afford that and then I guess I would be sticking to public hospitals where things are even more restrictive.
But ... as I mentioned above... they are very good at keeping you alive in a crisis :) Inge

[windchime]

At the risk of sending some of you into an apocalyptic fit I just use warm tap water here at home. I know that some places don't have quality water and I have no idea of the quality here, but it doesn't burn, unless I use two packets of the solution. Then it's a bit dicey. :ohmy:

[ingemlb]

LOL well I am a bit over zealous at avoiding potential infections due to my rather limping along immune system. No idea how our water would measure up. Apart from the fluoride taste it seems pretty good.

[windchime]

I figure the chlorine substitute they use must kill something. Besides I like living on the wild side. LOL :razz:

[annekat]

At the risk of sending some of you into an apocalyptic fit I just use warm tap water here at home. I know that some places don't have quality water and I have no idea of the quality here, but it doesn't burn, unless I use two packets of the solution. Then it's a bit dicey. :ohmy: I know some on here would disapprove, but I have used tap water and currently use pressurized natural artesian spring water from the area I live in, which is tested regularly by the city or county authorities at the well where many people collect it. I am no longer using my own tap water because it is from a shallow well, unless I boil it first, and then I don't worry about it.

[pberggren1]

Cindy, you are such a wild child......:razz:

[Carol]

Hello Yes the rinses are just so good as they helped me remove the crusting down the back of my throat. I know this sounds disgusting but we're all Weggies or their families here so it's OK. I was able to draw the rinse water back down my throat to slough off the crusting. A yucky technique but it worked. You need boiled water not distilled water tokill any bacteria. . What I did to get the EXACT same temperature all the time was to keep boiled water in the fridge in a glass wine bottle, then boil the kettle. So I had it worked out on the squeeze bottle exactly where to fill it to with the cold water and added the boileld water to get the perfect temperature. Regards Carol Lakes Entrance Australia

[ingemlb]

Hi Carol. Not sure I follow your technique. I squeeze the water up one nostril and it comes out of my mouth and the other nostril. Are you saying you swallow it or gargle it?
In any case I have not coughed up any crusting and I sure hope there is nothing gathering in that area. I did cough up a bit of blood the other day which we thought came from the sinus's. But that was a once off after blowing out a very large scab from the nose followed by a heap of fresh blood. I then lay down so that's probably how the blood came down via the post nasal drip. last couple of days I tend to start coughing as soon as I start trying to sleep or these coughing spasms wake me up. Well my prednisolone was increased to 40mg today so I am looking forward to finding out that this is going to fix everything :)
Regards, Inge.

[annekat]

It's all connected, so crusts from the nasal cavity can end up in the back of the throat to be coughed up from there. When rinsing, some of the solution ends up back there so I can imagine sort of snuffling it to loosen it up. I've worked out some techniques such as pulsating or very briefly blocking one nostril to increase the pressure and loosen the stuff up. With the latter, being careful and making it very brief is important. We don't want to force the solution into our eustachian tubes, so if that seems to happen, I would not do this.

[MikeG-2012]

Hi Carol. Not sure I follow your technique. I squeeze the water up one nostril and it comes out of my mouth and the other nostril. Are you saying you swallow it or gargle it?
In any case I have not coughed up any crusting and I sure hope there is nothing gathering in that area. I did cough up a bit of blood the other day which we thought came from the sinus's. But that was a once off after blowing out a very large scab from the nose followed by a heap of fresh blood. I then lay down so that's probably how the blood came down via the post nasal drip. last couple of days I tend to start coughing as soon as I start trying to sleep or these coughing spasms wake me up. Well my prednisolone was increased to 40mg today so I am looking forward to finding out that this is going to fix everything :)
Regards, Inge.

The instructions in the squeeze bottles usually tell you that if you can to sniff a little of the solution while rinsing so it cleans out the passages from sinus to throat. I wouldn't swallow if you can help it. One way to keep the stuff from running down the throat is to breath out through your mouth, moan, hum, something like that to close the palate. This works for me to keep the stuff going out the nose, and not down the throat at the same time.

Something I've been doing lately is GENTLY squeezing the bottle with the other nostril plugged up to fill the sinuses up with the saline. Stop when you feel it starting to press on the back of the throat. Hold the water in there for a few seconds and then blow it out. This fills up the sinuses and gets better moisture into all the nooks and crannies. My staff infections is getting progressively better doing this with my antibiotic rinse too. The crusts are getting better, coming out better and my nose just feels better since I am getting, and keeping, all the sinuses moist. My ENT strongly approved of the method too.

If you are going to try this, REMEMBER, GO GENTLY on the squeeze of the saline bottle--you do not want to flood the ears!

[annekat]

Mike, sounds like we came up with the same technique and posted about it at the same time.:smile1: So true that being cautious is important with this, so keeping it very brief. One will feel the increase in pressure right away and then can immediately unplug the plugged nostril.

[MikeG-2012]

Mike, sounds like we came up with the same technique and posted about it at the same time.:smile1: So true that being cautious is important with this, so keeping it very brief. One will feel the increase in pressure right away and then can immediately unplug the plugged nostril.

Yea, I posted it today, and that is about a month after trying it and seeing results. I can't give away all my tricks at once! LOL! I do this with my Waterpik on its lowest setting now that I know what I am doing! (-8

[annekat]

Yea, I posted it today, and that is about a month after trying it and seeing results. I can't give away all my tricks at once! LOL! I do this with my Waterpik on its lowest setting now that I know what I am doing! (-8 Waterpik sounds like the way to go. Do you have a special nasal attachment for it? Yep, people need to figure out their own tricks, for the most part, and use common sense.

[MikeG-2012]

Waterpik sounds like the way to go. Do you have a special nasal attachment for it? Yep, people need to figure out their own tricks, for the most part, and use common sense.

I use this Waterpik (http://www.waterpik.com/oral-health/products/dental-water-flosser/WP-60/) with this attachment (http://www.sinupulse.com/index.php?p=3_3) (first one on the page. It gives the Waterpik and Interplak models that it fits in the description)

I started my Waterpiking journey with this device (http://www.sinupulse.com/index.php?p=3_1), and fried it by overflowing the basin and shorting it out. So in desperation, I looked for a Waterpik locally and found that my tips from the SinuPulse fit a Waterpik I could buy locally for $49.00.

Lately, I just bought my same model at a thrift store for $3.00. I sanitized it with white vinegar and I now have a good, usable spare should this one burn up or wear out. (I'm still running 3 liters 2 times a day through my sinuses to keep them healthy.)

[annekat]

Cool, Mike! Thanks! Good of you to find these links and post them. I think I will check out my local thrift stores.

[MikeG-2012]

Cool, Mike! Thanks! Good of you to find these links and post them. I think I will check out my local thrift stores.

I was certainly doing the Snoopy dance when I found the one at the thrift store. I was so excited, I almost forgot to plug it in and see if it at least made noise! I thought the price was worth the risk as long as the motor on it ran.

[ingemlb]

Thanks Anne and Mike. That is a lot more flushing than I am doing and maybe thats why a lot of crap is still running down my throat. Was coughing up quite a bit of bloody mucous today. And the stuff out of my nose wasn't as bloody looking mire yellowy scabs so maybe I am not getting at the sinus deep inside. Still convinced its post nasal drip as I don't have a sore chest. Inge

[MikeG-2012]

Thanks Anne and Mike. That is a lot more flushing than I am doing ...

My ENT told me that you cannot over rinse. He's amazed that I've stuck it out this long with that much rinsing. I still believe that is one of the best things I started doing for my health. Other than this last little cold that settled to my chest, I haven't been sick with a cold or allergies for over a year--ever since I started the high volume rinsing.

[annekat]

I have gotten lazy and don't rinse as much as I should. There is less stuff in there than there used to be, but that's no excuse to be lazy. If I had a Water Pik I think it would be enough easier and less tedious that I would do better, plus I'd find out what is really in there that I didn't know about.

[pberggren1]

I have to rinse every day. Otherwise it would be very uncomfortable for me to talk and breathe. And within a few days it would plug up the nostrils totally.

[drz]

I have gotten lazy and don't rinse as much as I should. There is less stuff in there than there used to be, but that's no excuse to be lazy. If I had a Water Pik I think it would be enough easier and less tedious that I would do better, plus I'd find out what is really in there that I didn't know about.

I have an electric Grossan hydro Pulse machine with attachments for nasal and tongue use but seldom use it as the ole squeeze bottle seems easier and quicker to use. I only use the machine when I feel some heavy stuff in still stuck inside and it needs more volume or pressure to dislodge. I buy the sea salt and soda separately and mix it as three to one to get right balance which is about same as commercial packets. So I would say the machine are not easier or quicker unless you are needing to run through several bottles of rinse at one time.

[ingemlb]

I use this Waterpik (http://www.waterpik.com/oral-health/products/dental-water-flosser/WP-60/) with this attachment (http://www.sinupulse.com/index.php?p=3_3) (first one on the page. It gives the Waterpik and Interplak models that it fits in the description)

I started my Waterpiking journey with this device (http://www.sinupulse.com/index.php?p=3_1), and fried it by overflowing the basin and shorting it out. So in desperation, I looked for a Waterpik locally and found that my tips from the SinuPulse fit a Waterpik I could buy locally for $49.00.

Lately, I just bought my same model at a thrift store for $3.00. I sanitized it with white vinegar and I now have a good, usable spare should this one burn up or wear out. (I'm still running 3 liters 2 times a day through my sinuses to keep them healthy.)
s
Was waiting until I get out of hospital to search for something in Australia that doesn't quite break the bank. Did you find the original Sinupulse elite a good system before you fried it? Or are the dental ones better?

[MikeG-2012]

s
Was waiting until I get out of hospital to search for something in Australia that doesn't quite break the bank. Did you find the original Sinupulse elite a good system before you fried it? Or are the dental ones better?

Funny you ask that, as I was going to add that I think the SinuPulse did have a little more power and volume of water. I bought the Waterpik because I could get it locally and immediately, and the tips from the SinuPulse fit it. If i hadn't fried the other one in the middle of a bad flare up, I guess I would have ordered another SinuPulse machine. If I ever do, I think I will drape it in plastic wrap with a cut out where the water basin meets the base. That should protect it more from pitcher filling accidents. (-8

[ingemlb]

Thanks Mike :) I may have found a 2nd hand one so will see how that works. Comes with all the attachments. I was having trouble finding an outlet in Australia.

[MikeG-2012]

Thanks Mike :) I may have found a 2nd hand one so will see how that works. Comes with all the attachments. I was having trouble finding an outlet in Australia.

Great, just remember to give it a good cleaning with vinegar or something and then rinse thoroughly before you use it. You don't want vinegar in the sinuses. If you want to use soap, use Johnson&Johnson baby shampoo. That doesn't hurt your sinuses.

[ingemlb]

Hi Mike. I followed the instructions for sanitising the machine with a bleach and water solution.
The unit I bought (was told it had only been used 3 times on a 3 year old) is called Sinupulse Elite (http://www.sinupulse.com) Model SP100. Comes with 2 attachments for the nose and 2 for the throat and tongue.

Then I rinsed it all with clear water then tried it out.
The people who sold it to me bought it in the US and also sent along a power step-down gadget as we have different voltage here.

I used the cleansing tip rather than the mist tip. they suggested a strength between 4 and 6 and I found I had it on top strength but it was not being EJECTED out as I had expected? Just a steady stream. I think I used more force with the plastic bottles. I was wondering if the gentle flow that even the top strength gives is actually strong enough.

Nothing other than clear water came out this time. However I have been on Bactrim DS for 3 days now so maybe that is fixing the sinus inflammation. I will try the manual system again in the morning and if it clears up more then I would have to question if the machine is working properly :(

It looks brand new. Would like to hear what others have experienced with these machines.

[ingemlb]

Ok had a look at a youtube video (https://www.youtube.com/watch?v=-YrG_KJJpC8) and that shows same gentle flow as my machine. And looks like it is meant to be fairly gentle so maybe I just need to use 2 tanks and run it longer. Will try that tomorrow.

[MikeG-2012]

Ok had a look at a youtube video (https://www.youtube.com/watch?v=-YrG_KJJpC8) and that shows same gentle flow as my machine. And looks like it is meant to be fairly gentle so maybe I just need to use 2 tanks and run it longer. Will try that tomorrow.

You beat me to the response Inge! (-8 Yes, it will take more volume of saline to do the same thing as the squeeze bottle. I run mine wide open all the time, on highest setting. If there are large chunks/crusts, you will feel them come loose and then you just have to blow them out.

I run 2-3 liters of saline through a couple times a day to keep my nose and sinuses clean and opened up. Mix the saline in a larger pitcher, and use 1 teaspoon of pickling or canning salt and 1/2 teaspoon of baking soda per liter of filtered/distilled water. Supposedly, sea salt is not good for this because of the impurities in the salt, and with this wonderful disease, the last thing we need is another impurity in the sinuses, right? Mixing your own is significantly cheaper than the packets that they sell for the machine.

It may take a little time to get used to the difference, but with the increased water flow through your nose and sinus, it will eventually start to work. Just give it a little time.

Once you are used to the machine, try my trick of holding one nostril closed and gently filling up the sinuses (lowest setting on the dial). You will feel the trickle of saline in the back of your throat; that's when you are going to want to stop. Let the solution soak in there a for 30-45 seconds and then give a good blow out. I do this 5-6 times every time I "run my nose."

Keep at it my young apprentice! Your's truly, Obi-Schnoz (-8 LOL!!

[ingemlb]

LOL Mike. Thanks for the instructions Obi-Wan.

I will definitely persevere. Sounds like volume of water will do it. Thanks for the recipe for making your own saline. Currently I still have tonnes of the shop bought stuff but once it runs out will do what you suggest.

Will have to see what pickling or canning salt is here. Never come across it before but then I haven't been into canning :)

[cherS]

I used thre rinses and they helped alot. I cant anymore as I have lost 30% of my sinus cavity now I use flonase spray and it helps to dislodge the junk

[ingemlb]

sorry Cher that your sinuses are so bad. I am having some better luck with the contraption now. It is at least getting some phlegm out and I use 2 containers full. Think I am getting the hang of it.

I have ordered some attachments for cleaning between the teeth so will see if there is enough pressure for that :)

Mike I found the pickling salt. Will require a drive into the country to buy it :) But we don't mind. Will make a nice outing out of it.

[annekat]

Inge, I'd hold onto some of the pre-mixed packets, if that's what you have, as they are a lot easier for traveling. I've used the pickling salt but also just regular non-iodized salt. I think the pickling salt is finer grained so dissolves easier; there may be other benefits I don't know about.

[drz]

LOL Mike. Thanks for the instructions Obi-Wan.

I will definitely persevere. Sounds like volume of water will do it. Thanks for the recipe for making your own saline. Currently I still have tonnes of the shop bought stuff but once it runs out will do what you suggest.

Will have to see what pickling or canning salt is here. Never come across it before but then I haven't been into canning :)

Sea salt will also work but it tends to be more expensive. The main thing is to avoid any salt that is iodized.

[ingemlb]

Apparently there are 2 things not in pickling salt. Iodine and "anti-caking" mixture. So it's most likely a much purer type of salt and I guess if we take it internally best to go for as pure as possible. I still have quite a few of the packets and yes for travelling they would be very handy and in any case I can always buy some more.

I also bought a kind of manual pump which will be handier for travelling. Here is a link to the Neti Rinse (http://www.amazon.co.uk/Acu-Life-Neti-Rinse-Irrigator-Saline-Packets/dp/B002WA2RX4/ref=sr_1_5?s=drugstore&ie=UTF8&qid=1396331108&sr=1-5&keywords=Acu-Life)in case anyone is interested. It has a plunger which you can use to fill it up and I think makes it easier to use several applications at once. But ... haven't tried it out yet.

We will make a trip to the countryside and buy the salt in a week or so. Will be nice to go for a drive :)

[annekat]

I found pickling salt in my semi-rural neighborhood corner store. I guess "semi-rural" is the key, more people can and pickle out here, I guess. In town at a larger supermarket, I found some extra-fine non-iodized salt, not sure about the anti-caking part but haven't found that to be much of a problem. I have used iodized salt in a pinch, but I'm sure drz is right, it is best to avoid it. I think you could get by with any non-iodized salt between now and your countryside trip.

[me2]

I get my salt in bulk for super cheap at a food co-op in Olympia. It is just plain sea salt with nothing added. It works great. It clumps a little but is very easy to break up.
They also carry baking soda that I use in my rinse mix. I don't know if you have a food co-op or health food store that you could try. Try asking any hippies you see where to get some plain salt. Do you have hippies in Melbourne?

[ingemlb]

I am sure we have hippies but I am quite happy with the shop I found. Will be a nice drive. Not all that far away :) It's a shop specialising in canning materials so I may find something else that's interesting to buy :)

[me2]

That sounds perfect. I researched the salt a bit. It sounds like the sea salt might vary from source to source whereas the canning salt should all be the same. I too have used the iodized salt in a pinch but with the price of salt so low I really don't have an excuse.
I use a small pressure cooker to cook stew and chili in. I really like it and it saves on cooking gas because it works so fast.

[ingemlb]

Still waiting on that trip to the countryside :) Been too busy with medical appointments. Just wanted to mention here that my ENT told me last monday to add some Johnson's baby shampoo (not sure if that is an Australia only brand) to the rinse solution. Its a very gentle shampoo and he said just a few drops. Apparently it helps loosen stuff up. Tried it first time today and it made my nose run for ages afterwards with blobs of phlegm pouring out every now and then so it must be working :)

[annekat]

Nope, we have Johnson's baby shampoo here, too. So some of us may try it! Not sure I like the idea but will give it some thought.

[Dirty Don]

Drano works just as well...huh? I'm with you Anne, I have a tough time putting stuff in my nose whilst I still have stuff in there I don't want in the first place!

[MikeG-2012]

...my ENT told me last monday to add some Johnson's baby shampoo (not sure if that is an Australia only brand) to the rinse solution.

And it's FUN to blow bubbles through your nose. Brings out my inner child!!! (-8 LOL!!

In all seriousness, I've been doing the same thing lately since my mucosa is starting to form normal tissue again. It does smell nice too. My ENT recommends 1% solution which is a teaspoon per liter of saline.

[annekat]

Cool, Mike, that gives me a little more encouragement. Although I don't know if my mucosa is forming any normal tissue these days. i wasn't sure it ever would again. But then I think maybe I went undiagnosed longer than you did, so more damage may have been done. I don't remember so much about your initial stages. I just had a CT of my sinuses and will see my ENT soon so should be getting some ideas of how things look in there.

[ingemlb]

Drano works just as well...huh? I'm with you Anne, I have a tough time putting stuff in my nose whilst I still have stuff in there I don't want in the first place!
LOL Don. I don't think I'll try the draino :)

[mishb]

I have heard of many people using Johnson's baby shampoo - I'm like you Anne, I just couldn't bring myself around to doing it

[annekat]

I have heard of many people using Johnson's baby shampoo - I'm like you Anne, I just couldn't bring myself around to doing it Well, if it works that well, I might just get desperate enough to try it, the way my sinuses are right now.... I'd start with just one drop and take it from there.

[ingemlb]

Well, if it works that well, I might just get desperate enough to try it, the way my sinuses are right now.... I'd start with just one drop and take it from there.'

The only unpleasant thing is the taste :) You'll be right!

[renidrag]

I have to tell you folks, I have not had sinus involvement at any time, to the best of my knowledge. I have the utmost respect for you all and what you go through. My best to you. Let me say this, during my working years and inhaling many different toxins , when showering I would inhale lightly, soap and water thinking I was hopefully cleaning my nose. Weird, people I worked with thought so.
Dale

[ingemlb]

Maybe that's what protected you Dale :)

[MikeG-2012]

Cool, Mike, that gives me a little more encouragement. Although I don't know if my mucosa is forming any normal tissue these days. i wasn't sure it ever would again. But then I think maybe I went undiagnosed longer than you did, so more damage may have been done. I don't remember so much about your initial stages. I just had a CT of my sinuses and will see my ENT soon so should be getting some ideas of how things look in there.

Mine were one of the worst my ENT has ever seen. We've attributed my sinus recovery to my diligence and regimen of rinsing. I've been running three liters of saline though my sinuses twice a day for over two years. For the past 22 months, that amount through a Waterpik device. I can also get the untipped end of the waterpick end into my nose and sinus, so I get the saline directly into the affected area. Also, I've been holding one nostril shut and flooding the sinuses with saline and the antibiotic rinse for the past 2 months and the improvement has been exponential. The doc didn't think that I would ever have ANY normal mucosa, but I've proved him wrong, I guess. When I was flaring up in September/October, the doc called the inside of all my sinuses "VERY ANGRY" and told me that they looked like a child's skinned knee after he fell off a bike. Now that the wegs is not active, and I have had a lot of time with the antibiotic rinse (specifically made for me from the test of the culture swab taken of my infection), things are improving.

I am doing anything and everything I can to get after this sinus damage. I think I could count on both hands and feet the number of times I've missed one of my twice daily rinses, and those are when I am just too tired and/or just had a cleaning at the ENT's office. I even take a standard size NeilMed bottle and packets to the ENT's office and rinse immediately after he does the endoscopic cleaning. Any loose stuff he knocks up, I flush out immediately after the appointment. I would do this in the restroom if they wouldn't let me do it in the office sink. If my appointment is in the afternoon, I either rinse at my office and then go, or rinse at the ENT's office prior to and after my endoscopic cleaning.

I am maybe going a little overboard with the rinsing, but I was told that you can't over-rinse. So 6 liters a day is what I'm doing!

[annekat]

That is very impressive, Mike. You have done a great job. I can only hope my sinuses aren't in as a bad a shape as yours were. I'm glad someone steered you in the right direction with the copious saline rinses. I've been told to rinse but nothing like that. It was also suggested by the ENT, but I wouldn't say emphatically, that I go in every couple months for a cleaning, which I haven't done, because I thought I was getting enough out by multiple rinsings. I think my current problem is blocked sinuses, partially from seasonal tree pollen allergies. The swelling and lack of drainage causes dizziness and vertigo. I have no pain and never have, to speak of. I see the WG doc tomorrow about the CT scan and the ENT next week. I'm also on extra pred to reduce the increased inflammation that showed up in my bloodwork.

[ingemlb]

Wow that's quite a lot but good to hear you can't overdo it. I think you should post a Youtube video showing how you go about it with the different attachments. bit difficult to picture it all from the narrative :)

Sounds like you are achieving great things though so keep it up. I need to increase mine. I am managing once a day and probably not even quite 2 litres. I have had so many medical appointments and discovered that each day I can only cope with one thing on the schedule or I am totally stuffed. Yesterday I had a 10.00 am appointment with the Psychiatrist then a 1pm appointment with the dentist so in-between we managed lunch at the hospital cafe as I had to take the pred. By the time I got home I was totally exhausted and fell into bed. So in future can't manage more than 1 appointment on any given day :( I keep thinking I am up to it but my energy levels are low. And to boot I am so fast when I move around due to this racyness from the pred that I exhaust myself even doing small jobs around the house.

This morning I finally got around to taking down our christmas tree (yes don't laugh... nearly easter). It took me only 30 minutes but I was soaked through with sweat. Had to turn on the aircon and been sitting like a zombie in my recliner chair for the last hour trying to get enough energy to make lunch :(

Mind you I may have been heading for a hypo as well. Ate a piece of carrot cake and the sweating is easing.

So I think 2 times a day doing sinus rinse would mean that's all I manage lol.

[MikeG-2012]

That is very impressive, Mike. You have done a great job. I can only hope my sinuses aren't in as a bad a shape as yours were. I'm glad someone steered you in the right direction with the copious saline rinses. I've been told to rinse but nothing like that. It was also suggested by the ENT, but I wouldn't say emphatically, that I go in every couple months for a cleaning, which I haven't done, because I thought I was getting enough out by multiple rinsings. I think my current problem is blocked sinuses, partially from seasonal tree pollen allergies. The swelling and lack of drainage causes dizziness and vertigo. I have no pain and never have, to speak of. I see the WG doc tomorrow about the CT scan and the ENT next week. I'm also on extra pred to reduce the increased inflammation that showed up in my bloodwork.

I really think that you would benefit from rinsing more. I think too that my technique of pinching the nostril that the water is not going in and holding in the rinse for a half a minute before blowing it out, would get some into the sinuses and relieve blockages. My crutsts used to block me up after a day, even with aggressive rinsing. Now that I have been holding in the saline and flooding the lower sinuses, they are doing so much better.

I am a strong believer that aggressive sinus rinsing is the only thing that can beat the sinus problems associated with this disease. I've shown improvements in the past few months.

[annekat]

Thanks, Mike. I have been rinsing a lot lately, but I think my sinus tissues have actually been extra inflamed, whether from Wegs, allergies, an infection, or all three, and that whatever is in them is simply blocked from getting out. I do manage to get some stuff out of the nasal cavity, but not a lot. There just doesn't seem to be much in there, and what there is is not really crusty. The added prednisone is loosening up the tight feeling in my head, and things have improved; I seem to feel worse or better on alternate days. The pollen count here is extremely high right now, and I am sure that is part of my problem and am still arguing with my WG doc about that. Tomorrow is the day I'll get the ENT's view on all this and see whether he will back me up on the allergies. I think he will, and will prescribe me some things and/or suggest that I start up allergy shots again, plus interpret the recent CT sinus scan maybe a little differently than what I've heard so far. I've held back on info about that for a reason... I wanted to hear his point of view before sharing what was said before, because I have reason to think it may be different. I am continuing to do lots of sinus rinses whether they are productive or not, inhaling steam or doing ice packs ahead of time, pinching off one nostril, trying all kinds of things including the baby shampoo with some success. Things aren't resolved yet, but I hope to be able to tell you a lot more after talking to the ENT tomorrow.

[lag713]

I hope you have a good appointment Anne! My rheumatologist was proactive in wanting me to see an allergist to help with seasonal and possibly indoor allergies. She says it is important to keep the nasal passages clear and the inflammation down. Allergies are such a nuisance!

[annekat]

I hope you have a good appointment Anne! My rheumatologist was proactive in wanting me to see an allergist to help with seasonal and possibly indoor allergies. She says it is important to keep the nasal passages clear and the inflammation down. Allergies are such a nuisance! Thanks! My appointment revealed some strange stuff... I had a response here but have moved it to a new thread called "Disappearing Sinuses". Replies from Dale and Cindy above were to that content.

[renidrag]

I don't know it I should congratulate you or what? I like the part about not ever having sinus issues for life but at the same time I would really like to know where they went. Glad you are seeing WG doc soon and hope your numbers are ok.
Dale

[windchime]

Oh Anne, it all sounds so confusing. I'm sorry you are having to go through all of this. Hopefully you can get some clarification. With me I've learned I need things in "smaller bites". I process that better than a lot of data all at once. That's just me. I hope you get it all figured out in time. Hugs to you. :hug1:

[annekat]

thx, Cindy... I've moved the discussion to a new thread entitled "Disappearing Sinuses". You are right about the "small bites".

[annekat]

I don't know it I should congratulate you or what? I like the part about not ever having sinus issues for life but at the same time I would really like to know where they went. Glad you are seeing WG doc soon and hope your numbers are ok.
Dale My reply to this is now on another thread called "Disappearing Sinuses", and Cindy's reply above is also to that moved content.