04-11-2008, 10:20 AM #1
where are our mods? I haven't been on much lately
posted a month or so ago that I thought I was going into remission and the good times continue! Been a long haul but I'm feeling better than I have since I first starting having symptoms in 2003. So I've been feeling well enough to get around and about and haven't been on the board much lately til recently and was just wondering where everyone is? I haven't seen our great mods on lately...hope they are doing ok and that everyone else is doing well. I have been following diet very carefully and healthy as possible and am so happy to not have to depend on my meds as I have in the past.
Again, I hope everyone is doing ok and finding what works for them.
BriIn remission since Aug 2009!
New to IC? read this--IC Treatment and Diagnostic Guidelines--American Urological Association
http://interstitial-cystitis-diet.bl...nosis-and.html *** http://www.auanet.org/content/guidel...ent_ic-bps.pdf
What helped me get to and stay in remission? stress reduction, diet, time, meditation, stress reduction, stress reduction, stress reduction!--I no longer take medications for IC, PFD,VV, anxiety, or depression. Making career and lifestyle changes to reduce stress and learning techniques to manage anxiety set the stage for my bladder to heal.
My history: No history of bladder issues***Onset of IC and VV sxs Nov 2003***Diagnosed Nov 2004 based on symptoms and hydro/biopsy results***Cysto-Hydro did not give therapeutic relief, I had complications and long recovery ***Hunner's Ulcers found and removed during hydro***Symptoms: the usual~pain, burning, spasms, frequency, urgency, nocturia, lower back and upper thigh pain, very bloated "IC Belly"
Treatments that helped my IC,VV,& PFD symptoms: pyridium, elavil, tylenol 3, ibuprofen, lidocaine gel and patches, cold packs, heating pad, diet, lots of water
04-11-2008, 11:36 AM #2
Our titles have changed to Support Volunteers and Support Leaders.
Glad to see you here Briza. I hope you continue to feel better and have a bright sunny spring and summer.Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011
"One hour at a time, this was NOT my American Dream but it has to work out somehow."
I also have some journals of my journeys, past and some present at:
http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/
Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.
04-13-2008, 06:06 AM #3
Hey Bri! Yup, we're here, like Kara said our names have changed!!Hugs,
How do you eat an elephant? One bite at a time...
Harry arrived 2/23/09!
*IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
IC Diet Cheat Sheet:
IC dx'd Nov 2004
Lymphocytic Colitis dx'd July 2005
Current IC Meds
Vistaril 25mg in the evening
Previous IC Meds taken:
Cystoprotek - 2 caps 2x's a day
Elmiron, 100mg 3x's a day
Ditropan, 5 mg 3x's a day
Wellbutrin 150mg 2x's a day for Anxiety/IBS
Pepcid 40mg a day for GERD
Zytrec for Nasal Allergies
Align Probiotic daily for IBS
04-13-2008, 06:12 AM #4
Right here Bri.. Glad to see you back..(((hugs)))Hugs
ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!
Link to Patient Handbook:
Diet Reference Sheet:
Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring
Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure
Meds I have Tried:
Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
Lexapro< Bad reaction to this med!
Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..
Dx With IC in Nov 2006 with Hydro/Cysto
Hydro/Cysto Caused Bladder to Rupture.
Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.
ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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