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04-10-2013, 10:32 AM   #1
positivemum
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Tonsil stones

So the odd white patch in my 14 year old son's throat came back after we thought it had gone. We now discover it is a tonsil stone!. Another great thing to deal with. The GP says it is not related to crohns or azathioprine but I am not convinced. Has anyone else had experience of these?
04-10-2013, 01:46 PM   #2
Jim (POPS)
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Yes, I have had tonsil stones and I belive they are related to crohns. I also had a slight sore throut at the sametime and they both lasted around 3-4 months. They have gone away now and everything seams to be ok. Just keep a eye on them, if they get bigger I would go back to the Dr. They should clear on there own like mine did.

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04-10-2013, 03:35 PM   #3
Devynnsmom
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I've never heard of that! Wow!
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Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
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04-10-2013, 04:55 PM   #4
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My son Evan has had tonsil stones 2 times since his diagnosis.
04-11-2013, 05:54 AM   #5
positivemum
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Thanks folks for the replies. Did you do anything to help with them?
04-11-2013, 06:42 AM   #6
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Urgh, I have tonsil stones, and I believe they're related to the fact that mono destroyed my tonsils. I am not sure if they're related to Crohn's, but they're also really common.
Here are some things I've done to get rid of them:

- Ask the dentist for one of those injector things (irrigators?) used for cleaning up after wisdom tooth surgery. Fill them with mouthwash. Squirt into crypts.

- Buy a waterpik. We hate ours, and it doesn't help. The Irrigator is much more effective (and $0 compared to $50!).

- Squeeze them out with q-tips

- Get a really strong anti-bacterial mouth wash

Be careful not to damage tonsils when doing this. Tonsil damage = more holes = more tonsil stones. Mine are spreading to new areas.. My partner also gets tonsil stones, so I think we're infecting each other.

I clean my tonsils every day...and, it helps control the smell! Now, I rarely get tonsil stones, but I do get this weird white oozing stuff (that stinks!), but is easy to remove with just a little push.

Sadly, the only other option is surgery or tonsil resurfacing.
04-11-2013, 07:04 AM   #7
pipmom
 
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Glad someone brought this up. My daughter had tons of these prior to being diagnosed with Crohns. Interesting. She has not complained of these since going on Remicade. Will ask her when she had one last.
04-11-2013, 09:28 AM   #8
Farmwife
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I found a good web-site about this.

http://www.wikihow.com/Remove-Tonsil...s-(Tonsiliths)

My hubby has these from time to time. We switched to a homemade toothpaste that uses sea salt and he noticed they had stopped (see method 3 in the article). Also he gets HORRIBLE cankers sores and since the new toothpaste the sores don't stay as long and don't get as bad.
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04-13-2013, 09:35 PM   #9
CarolinAlaska
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These sound terrible. Why wouldn't you want to just have your tonsils removed rather than dealing with nasty smelling and oozing things like this all the time?
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04-13-2013, 10:33 PM   #10
PsychoJane
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I've had these pretty much forever but nowhere them being a problem. I don't have bad breath from it either, I just see them at the back of my throat sometimes and they eventually fall on their own. Maybe 2-3 times in my life did they cause me some sort of discomfort. I read that they are more frequent with people that tend to have inflamed tonsils... we can ponder if the IBD inflammation could be considered as a trigger for them... who knows. That being said, I don't really have tips to avoid them but I know that for the ones that are greatly impaired by them, there are some laser surgery to reshape the surface of the tonsil that can improve the condition and "flatten" the area where the stuff accumulates. Now, the where and by whom can it be done, that, I haven't looked as of yet.
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04-13-2013, 10:54 PM   #11
Twiggy930
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I thought everyone got these every once and a while...

Mine have never bothered me nor caused me to have bad breath, at least I don't think they have...
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Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
04-14-2013, 01:11 AM   #12
Jennifer
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I'm sorry to hear that. I know I mentioned crypt debris in your other thread, the stones are just hardened crypt debris.

"Tonsil stones, or tonsilloliths, are formed when this trapped debris hardens, or calcifies. This tends to occur most often in people who suffer from chronic inflammation in their tonsils or repeated bouts of tonsillitis."

"The appropriate treatment for a tonsil stone depends on the size of the tonsillolith and its potential to cause discomfort or harm. Various options include:

No treatment. Many tonsil stones, especially ones that have no symptoms, require no special treatment.
At-home removal. Some people choose to dislodge tonsil stones at home with the use of picks or swabs.
Salt water gargles. Gargling with warm, salty water may help alleviate the discomfort of tonsillitis, which often accompanies tonsil stones.
Antibiotics. Various antibiotics can be used to treat tonsil stones. While they may be helpful for some people, they cannot correct the basic problem that is causing tonsilloliths. Also, antibiotics can have side effects.
Surgical removal. When tonsil stones are exceedingly large and symptomatic, it may be necessary for a surgeon to remove them. In certain instances, a doctor will be able to perform this relatively simple procedure using a local numbing agent. Then the patient will not need general anesthesia."

Prevention
"Since tonsil stones are more common in people who have chronic tonsillitis, the only surefire way to prevent their occurrence is with surgical removal of the tonsils."
http://www.webmd.com/oral-health/gui...and-prevention

At most in the past I would use a Q-tip to push them out myself but they just came back after some time passed. Since I had my tonsils removed I don't have to deal with the pain anymore. Talk to his doctor about a tonsillectomy as its a recurring painful problem and/or get a referral to an ENT (Ears, Nose and Throat specialist) and discuss it with them.
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04-14-2013, 02:53 AM   #13
positivemum
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It has fallen out again and he is on a strong mouthwash which should help prevent them - we'll see. thank you everyone for you support and information
04-14-2013, 03:02 AM   #14
Farmwife
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Thanks for the update.
My son got these but had his tonsils removed at 4.
One thing the surgeon said is his tonsils were quite damaged, I now wonder if it was the stones and viruses that help to do that.
04-14-2013, 03:24 AM   #15
Sascot
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Hope the mouthwash helps to keep them away. Never heard of them before.
01-14-2014, 03:44 PM   #16
john2223
 
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So the odd white patch in my 14 year old son's throat came back after we thought it had gone. We now discover it is a tonsil stone!. Another great thing to deal with. The GP says it is not related to crohns or azathioprine but I am not convinced. Has anyone else had experience of these?
Tonsil stones and crohns disease are definitely related. I noticed I had them too but I didn't know what they were. You can remove them by gargling warm salt water and spitting them out.
01-14-2014, 05:42 PM   #17
graphicdesignermom
 
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Tonsil stones and crohns disease are definitely related. I noticed I had them too but I didn't know what they were. You can remove them by gargling warm salt water and spitting them out.
This is really interesting because my son has had tonsiliths (tonsil stones) for many, many years but was only diagnosed with Crohn's in April.

Another related issue is geographic tongue. He had it really bad and our dentist, oral surgeon, and orthodontist all dismissed it. But it was because of malnutrition from the undiagnosed Crohn's. Once he started treatment, it went away in about a month.

He doesn't get the tonsiliths very often now. But he would just cough them out. Unless they are really bad, it is not considered enough of a reason to have surgery.
01-15-2014, 01:27 AM   #18
Jenn
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Interesting indeed. My son didn't have these (that I know of), but did have his tonsils and adenoids out at age 2 for chronic infections.
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