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Andrea Barnett Budin · 11-16-2013, 02:53 PM

Okay, Morning Glory. You have a rare but treatable inflammatory disorder. So similar to IBS, and to side effects from chemo, guess your docs didn't... I do think the nausea was key to realizing that's not in keeping w/IBS symptoms. But then again, chemo can cause nausea. Oy...

Guess the snake, and the pathologist KNOW more than we give credit...

But now with treatment, you can eat! I AM SO RELIEVED FOR YOU, FLORI, FLORI! Plus, your weakness from malnutrition will go away (good riddens!).

If problem comes back, which it should not, you must be alert to trigger foods (my IBS triggers grow it seems exponentially, cause sometimes I eat nothing wrong and have a flare up, which sucks).

I know you'll stay well hydrated, right?!

I googled (goggled) and saw this: It is suggested that patients with Collagenous Colitis avoid using any non-steroidal anti-inflammatory medicines (NSAIDs such as ibuprofen), because of a possible link between patients taking NSAIDs for their arthritis-like symptoms and onset of collagenous colitis.

Has a doc mentioned this to you??

If symptoms return after stopping your tx, the article says -- you can try liquid Imodium (works for me better than pills) and if that doesn't control the situation -- they recommend BISMUTH SUBSALICYLATE (have no idea what that is). The article also says BUDESONIDE (again, not familiar) might be helpful for chronic suffers, which I am assuming you will not be! NOTE TO SELF -- BE DONE WITH THIS!

Love to you,
Andi

11-16-2013, 02:53 PM	#6
Andrea Barnett Budin Senior Member Join Date: Oct 2005 Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW... Posts: 1,904	Re: What the Snake Saw... Okay, Morning Glory. You have a rare but treatable inflammatory disorder. So similar to IBS, and to side effects from chemo, guess your docs didn't... I do think the nausea was key to realizing that's not in keeping w/IBS symptoms. But then again, chemo can cause nausea. Oy... Guess the snake, and the pathologist KNOW more than we give credit... But now with treatment, you can eat! I AM SO RELIEVED FOR YOU, FLORI, FLORI! Plus, your weakness from malnutrition will go away (good riddens!). If problem comes back, which it should not, you must be alert to trigger foods (my IBS triggers grow it seems exponentially, cause sometimes I eat nothing wrong and have a flare up, which sucks). I know you'll stay well hydrated, right?! I googled (goggled) and saw this: It is suggested that patients with Collagenous Colitis avoid using any non-steroidal anti-inflammatory medicines (NSAIDs such as ibuprofen), because of a possible link between patients taking NSAIDs for their arthritis-like symptoms and onset of collagenous colitis. Has a doc mentioned this to you?? If symptoms return after stopping your tx, the article says -- you can try liquid Imodium (works for me better than pills) and if that doesn't control the situation -- they recommend BISMUTH SUBSALICYLATE (have no idea what that is). The article also says BUDESONIDE (again, not familiar) might be helpful for chronic suffers, which I am assuming you will not be! NOTE TO SELF -- BE DONE WITH THIS! Love to you, Andi __________________ Andi BB '95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive... '98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!) + good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either... Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...