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Veteran Member

Date Joined Mar 2008
Total Posts : 2855
   Posted 1/24/2009 1:17 PM (GMT -6)   
I thought I have had a lingering case of thrush from taking prednisone, but now I realize, after a little internet research, that I have what are called "tonsil stones." Little white curd-like things that grow in the tonsil area in the back of my throat. I guess they are not harmful, although I think I'm irritating my tonsil area by scraping them out (another use for that bathroom flashlight!). I never had my tonsils out, but maybe I  need to now. 
Obviously I need to ask my doctor about these, but I wonder why I'm getting them now, if it might be related to changes I've made in my diet, or the probiotics...any thoughts or experience? So many weird problems come with this UC.
(The use of the bathroom flashlight, that was the most hilarious thread ever, remember? sorry, I'm hijacking my own thread.)
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder, then Forte, now a stronger one (50 billion). Doing much better, but still having some bad days. 

Elite Member

Date Joined Mar 2003
Total Posts : 10407
   Posted 1/24/2009 3:46 PM (GMT -6)   
I've had those a couple of times, related to other infections. The first time I had tonsillitis, and the last time I had a smoldering sinus infection. Check with your doctor.

Mine never caused me any discomfort, but the smell of them was revolting when I coughed and they came out. I have to think my breath must have been rancid.
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.

Elite Member

Date Joined Apr 2004
Total Posts : 23551
   Posted 1/24/2009 4:07 PM (GMT -6)   
I used to get them frequently when I was a teenager. I didn't know what they were but Judy is right, boy did they ever smell! When I got mine, I was never sick with any sort of infection. They just happened. As I got older, in my 20's somewhere, they stopped producing and then my tonsils just stopped working all together. I had them removed when I was 30 after having repetitive strep infections.
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-worked great!, OA in my fingers -Celebrex and Tylonel Arthritis
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Regular Member

Date Joined Jun 2007
Total Posts : 73
   Posted 1/24/2009 4:40 PM (GMT -6)   

I have been getting tonsil stones for years and have been cleaning them out daily until recently. I went to an ENT years ago who did not think I should get my tonsils out.

I have been using saline sinus rinses for the past several months because of a recent surgery and found that I am getting the stones much less often now. I read that they are often caused by post-nasal drip so it makes sense that the rinses help.


Female, age 43
Diagnosed with Ulcerative Colitis 2/2007
In remission since 7/2008
6 Asacol Daily
Fish oil, multi-vitamin, B complex, Mag Oxide, Calcium, Vit C, Vit E, Multi-vit

Veteran Member

Date Joined Apr 2007
Total Posts : 1366
   Posted 1/28/2009 1:20 PM (GMT -6)   
Just saw this and thought I'd add that I too used to get tonsil stones ALL the time. I had almost forgotten about them though because I haven't gotten any in months... Not sure what the difference is or why they stopped. Definitely annoying though.

And yeah, everyone should keep a bathroom flashlight! Hehe :)

Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
Lexapro 10mg
Currently on no UC meds, just waiting to be started on Remicade. 2 weeks waiting so far.. Ugh..

Serenity Now
Veteran Member

Date Joined Jan 2009
Total Posts : 2156
   Posted 1/28/2009 1:43 PM (GMT -6)   
Tonsil stones! I used to get these all the time as a kid, less frequently now. I never knew they had a name! As another poster described, they smell like the devil!

Regular Member

Date Joined Aug 2008
Total Posts : 327
   Posted 1/29/2009 12:09 AM (GMT -6)   
Yuck. I get those sometimes. I mentioend them to an ENT once (before I knew they had a name), and he wasn't concerned -- said his wife got them, too. (She is a realtor, and every Sunday when I see her ads in the paper, I picture her coughing up a tonsil stone...) Seems like his suggestions were to remember to brush my tongue, be careful about flossing, and gargle with sat water; at least, that's what I do now, and they rarely occur.

Christine, glad you liked the flashlight thread; I think I was the perpetrator on that one...
41, female
Dx ulcerative proctitis, 3-5 cm, June 2008. Still flaring? Not sure.
Canasa 1000 mg suppositories and 1 tsp smooth texture Metamucil nightly
25 mg hydrocortisone suppositories (tapering) and 1 Garden of Life Primal Defense Ultra in a.m.
Effexor 37.5, Remeron 30 mg, and Trazodone 75 mg for sleep/anxiety (clonazepam as needed)
2.5 mg methimazole for thyroid
Had some success with acupuncture
Osteopenia and other assorted ailments

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