Neti pot question (really gross, sorry)

[LilyPony]

Still waiting to hear back if I am going to be blessed with a JH appointment, but in the meantime...

Finally got over the indignity of the neti pot and have been using it at least once a day. Most of what comes out is thick semi-congealed blood. It takes nearly 2 pots of water to flush it all out. Then the "clean" water is tinged pink with blood. It's like I have a constant ooze of blood that is not enough to cause an official bloody nose but enough to fill my face with it. Last week it was lots of gunk that looked like sinus infection with some blood, more of a yellowish brown. Could the act of rinsing be irritating me, or maybe the powder (saline etc that comes in packets with the pot) is irritating my nose? Or the gunk was just slowing the bleeding? Or is this yet another new symptom? Am I getting addicted to a clear nose and making it worse?

Great thing is my pain is nearly gone except for nasty twinges that go away quickly. I'm just getting really paranoid without any concrete primary diagnosis and nobody having much clue what do with me.

Also, nothing to do with the neti pot but I have developed what I believe is Reynaud's in my fingers and toes (on the right, just like all my other symptoms). Cold and clammy then firey hot, prickling, tingly pain and bright red. Nothing constant just a few times over the last couple days. I know that prednisone does crazy stuff but this is new for me. Any thoughts on that?

If they haven't already, they'll sign me up for hypochondriac before long!

[Brooke]

I use the neilmed sinus rinse everyday, sometimes 2-4 times per day. As far as I know, there isn't any harm. I was told to use it from my ENT and also Mayo.

[freakyschizogirl]

The ENT at Addenbrookes told me i could use Neilmed 1-2 times a day.

[Jack]

I used to rinse twice a day or whenever required and I don't think I had any bad effects. The stuff that comes out is always gross and bloody, but it is better out than in! Make sure that the mixture strength is correct and that the water is warm.

[LilyPony]

Okay, thanks everybody. I'm using the nielmed and mixing it precisely with warm water. I was just concerned about what I was seeing and making sure I coudlnt' be making it worse. At least it's coming out!

[drz]

Okay, thanks everybody. I'm using the nielmed and mixing it precisely with warm water. I was just concerned about what I was seeing and making sure I coudlnt' be making it worse. At least it's coming out!
In my experience once you start to clear out the ugly junk, more healing takes place and you end up with clearer flushes and much less junk. I think the biggest risk is if you use too much force you might push crap into Eustachian tubes or spread an infection, but gentle washes shouldn't do any harm when done with correct mixture.

[ArlaMo]

The ENT at Cleveland Clinic told me that moisture is the enemy of advancing disease in the nose. He sent me home with instructions to irrigate my nose 2-3 times a day with a toomey syringe - saline/mupiricin solution - (he actually told me that the netipot wasn't aggressive enough for Wegs patients.) I also have a nasal cream that I apply with a q-tip 4 times a day. My nose was exuding crud that sounds similar to your experience but I have had vast improvement in the last two weeks using Dr. Knott's regimen.

[Sangye]

My Wegs ENT said the neti pot is fine (though I don't have major nose involvement).

You can use a neti pot as much as you want, as long as you are using water at the proper temp (lukewarm--never hot or cold) and the proper amount of salt. If you have a cold or sinus infection, you can use it many times a day.

Jack once said not to blow your nose really hard to get the water out---does lots of damage. I didn't know that but my nose has done better since following his advice. After you do the rinse, lean your head forward and without holding either nostril closed, blow out your nose. You can't blow too hard if you do it that way.

[pberggren1]

I actually have to blow fairly hard during irrigating with Waterpik to get the chunks and crusts out. Otherwsie I would be irrigating for about an hour.

[Jack]

It is all quite a long time ago now, but I seem to remember that soaking was the answer and if you put off the final clearing for 5 minutes (just drip over the bowl) it all comes out more easily.

[pberggren1]

I have tried that as well Jack but did not have much success. There are sometimes chunks that will not seem to dislodge unless I blow out a little bit. But maybe I will try your method again.

[freakyschizogirl]

I blow a little bit while using my Neilmed sinus rinse, but thats because i get big crusts that are hard to dislodge with rinsing alone. I only blow gently tho. And it doesnt need a lot of encouragement to come out.

[Jack]

I think that so long as you are kind to yourself it helps the healing process. It is when you try to use force that damage can occur. Most of us know when we are pushing our luck! :wink1:

[Daggar]

:confused1:I'm confused - nothing new! Does the sinus issue (crusting?) continue even if you're in remission or started on a maintenance-based treatment?

[pberggren1]

It gets better for most people in remission. Mine got better but was still there and I have always had to irrigate every day.

[Jack]

Mine went from extremely bad to 90% better and is now nothing that causes me any concern.

[Rose Cozzette]

what has worked for me is keeping humidifiers going 24/7 and a little petrolatum inside the nose at night and then I can blow easily the next am. the petrolatum is a Rx from the ENT and a tube lasts a long time as you use only a small amt. the nasal spray he recommended only dried me up too much and the neti pot didnt seem to help very much.

[freakyschizogirl]

I'm surprised the Neti pot didnt work for you Rose Cozzette

[Jack]

I did not get on very well with a neti pot and needed to use a much greater volume of liquid squirted from a 50ml syringe. I think that my nose required industrial scale treatment! :ohmy:

[LisaMarie]

I use the neil bottle with the solution mix twice a day...I am now getting clear stringy stuff with few clots.....it definately gets better...i had a hard enough time getting use to the bottle soo so waterpick or syringes for me thank you....hope you all have a great day

[coffeelover]

I also use the neil med bottles twice a day and maybe should/could use it more. My nose is better by doing this, but no where near perfect. I also put in a Rose Hip solution daily or twice daily (depending when I remember) that was prescribed to me by by WEG/ENT from the Mayo in Rochester, MN. Instead of the petroleum that Rose talked about. I also humidify my house, in the winter, when it is dry all the time. Two humidifiers in my bed room and one in my kitchen. Those are my two places I spend the most time at home. It helps! Without it, I would be suffering much more.
I figure this is the way it will be for me the rest of my life...so I accept it and move on.
Coffeelover

[Carol]

Maybe the Neilmed bottle would give you just a little more pressure than a neti pot. Half way through the rinse I would actually draw the water back down the back of my throat as the crusting was on the back of my throat also and very annoying. Water seemed to come out of every hole on my face doing this but I got used to it. I'm in remission, but still on Imuran and Bactrim DS and my nose has never been clearer in all my life. Have you ever learnt the Buteyko ???? method of breathing which is used for asthmatcs to clear their nose. You exhale all the air in your lungs, hold your nose for as long as you can stand it then remove your fingers off your nose and then you must breathe in VERY VERY shallowly through your nose. You feel as if your lungs are about to explode but it is good for clearing the nose and if you have asthma can quickly relieve that tight feelin which allows you to avoid using puffers - ventolin.
Regards Carol

[Rose Cozzette]

I did not get on very well with a neti pot and needed to use a much greater volume of liquid squirted from a 50ml syringe. I think that my nose required industrial scale treatment! :ohmy: Jack, I agree w/you, the neti pot didnt seem to have enough power.

[Rose Cozzette]

I also use the neil med bottles twice a day and maybe should/could use it more. My nose is better by doing this, but no where near perfect. I also put in a Rose Hip solution daily or twice daily (depending when I remember) that was prescribed to me by by WEG/ENT from the Mayo in Rochester, MN. Instead of the petroleum that Rose talked about. I also humidify my house, in the winter, when it is dry all the time. Two humidifiers in my bed room and one in my kitchen. Those are my two places I spend the most time at home. It helps! Without it, I would be suffering much more.
I figure this is the way it will be for me the rest of my life...so I accept it and move on.
Coffeelover unfortunately you are probably right and it is now a lifelong problem. I feel so gross with having to spit out or blow gunk all the time. do you get any dizziness? I do at times depending on how my sinuses are doing. and it's always been more on my right side.

[Rose Cozzette]

Maybe the Neilmed bottle would give you just a little more pressure than a neti pot. Half way through the rinse I would actually draw the water back down the back of my throat as the crusting was on the back of my throat also and very annoying. Water seemed to come out of every hole on my face doing this but I got used to it. I'm in remission, but still on Imuran and Bactrim DS and my nose has never been clearer in all my life. Have you ever learnt the Buteyko ???? method of breathing which is used for asthmatcs to clear their nose. You exhale all the air in your lungs, hold your nose for as long as you can stand it then remove your fingers off your nose and then you must breathe in VERY VERY shallowly through your nose. You feel as if your lungs are about to explode but it is good for clearing the nose and if you have asthma can quickly relieve that tight feelin which allows you to avoid using puffers - ventolin.
Regards Carol
I did try the neilmed bottle and liked it better. may try the Buteyko method, sounds interesting...

[drz]

i like the squeeze bottle but if like more power in the rinse the water pik machine is a good device too. It also may be safer than trying to squeeze the NeilMed bottle too hard to get more force.

[Brooke]

I have only used the NeilMed bottle, if this has more pressure than the others, I will stick to it. I feel like I need a lot to get that gunk out of there.

[Rose Cozzette]

I have only used the NeilMed bottle, if this has more pressure than the others, I will stick to it. I feel like I need a lot to get that gunk out of there. I am so happy! I got my latest labwork back and the BUN and creatnine were w/in norms and EGFR was 50! this is the best so far, yahoo... the white blood count was down to 12000. am I finally making some progress??

[freakyschizogirl]

I feel so gross with having to spit out or blow gunk all the time. do you get any dizziness? I do at times depending on how my sinuses are doing. and it's always been more on my right side.


I have the same problem RoseCozzette and i get disgusted looks off of my family when i do blow or spit out the gunk. And i too occasionally get dizziness, got it today as it happens but then i've not rinsed my nose! Opps! :blushing:

[Rose Cozzette]

I have the same problem RoseCozzette and i get disgusted looks off of my family when i do blow or spit out the gunk. And i too occasionally get dizziness, got it today as it happens but then i've not rinsed my nose! Opps! :blushing: so its obvious that ther is permanent damage to the sinuses, I had wanted the ENT to go in and scope the nose to see or do a scan but he didnt think it was that important. geez... is your vocal quality changed? my voice is so different now and I get concerned, being retired sp therapist I know that a chronic condition can cause serious problems down the road, but again he didnt seemed concerned. so am planning to move to Denver area soon and will find new ENT who knows more abt weggies. still dry and windy here so sinuses cont on...

[freakyschizogirl]

The only problems with my voice is in connection to the post nasal drip and getting lots of mucus there that i have to spit out. Disgusting. Asked my ENT what to do about post nasal drip and he said there is nothing that can be done. Nice. Irritating to say the lease.

[aewaustin]

Just a tip for use of the Neti pot, I use it in the shower every day. Using it in the shower makes it a little less gross, and since I do it at the end of my shower the moisture from the shower helps loosen things up a bit so I think it works a bit better.

[Brooke]

Good tip aewaustin!

[Sangye]

Just don't slip on your boogers. :wink1:

[Brooke]

Lol, EEEWWWWW!!!!!

[freakyschizogirl]

Or block the drain with them!

[pberggren1]

Or block the drain with them!

My Dad has had to clean out the pea trap a few times in my sink because of chunks.

[freakyschizogirl]

Nice! I do notice the next day sometimes there's a nice big booger hanging onto the drain for dear life that i managed to miss, oops! Luckily i get to them before the rest of my family!

[Rose Cozzette]

Nice! I do notice the next day sometimes there's a nice big booger hanging onto the drain for dear life that i managed to miss, oops! Luckily i get to them before the rest of my family! you guys are so funny! I had a good laugh...

[Rose Cozzette]

Just don't slip on your boogers. :wink1: the kidney doc said I am in remission now! yahoooo now to stay that way. he didnt lower the cellcept yet as I still have blood in urine but all other bllodwork is looking good. except the wbc, dont know when that goes back to normal. :thumbsup:

[Sangye]

That's great, Rose. Does your rheumy agree?

[Rose Cozzette]

That's great, Rose. Does your rheumy agree? I am having increasing difficulty getting the rheumy to communicate with me. He seems to be so negative and doesnt answer my questions, just gives noncommital responses. tho he has a lot of experience with weggies, the kidney doc trained at the Cleveland Clinic and is more open, comm. with me and I can have my say with him. dont think the rheumy disagrees but is just negative. I plan on moving in the near future to the Denver area and will have all new docs there so am just biding my time with the rheumy.

[Sangye]

Good plan. Sometimes there's not much you can do when you have a doc who doesn't communicate!