Tweet
I have had IC since 2003. It took me 3 doctors to get a diagnosis. I have never posted here, just lurk. My IC is normally under control. I am in a flare that is reminding me that I have IC and I do not have a normal bladder. I am going through alot of stress in my life at the moment. I just want to cry. It is bringing back bad memories for me. I have no one to talk to. Thanks for letting me vent.
-
-
I hope you start to feel better soon! I have no idea what you're trying for your flare but give us some idea of what you're doing and maybe we can suggest some things that you haven't thought of or tried.
Christine
I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
I have tried every oral medication as well as rescue instills and DMSO.
I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)
Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
Also proud mom to the best Bullmastiff on earth, Claus
-
I am on Elmiron, Elavil, Meclizine, Topamax Methadone, Ultram. I am taking Urised. I am being careful with my diet. Drinking more water. Using a heating pad. The things that I know usually work for me. I am just upset because it has been about a year since I had a flare. Thank you for your concern. I just needed a place to vent. No one around here understands what IC is even when I explain it to them.Comment
-
HI! SO sorry you are in a rotten flare! They sure can ruin your day....or week!
Sounds like you are on all the right meds...tho Urised didn't work for me. Azo works better.
Stress can really cause flares and make them worse. Is there any way you can take some time for yourself and just relax? I know that's difficult some times! But even 10 min at a time thru out the day can help.
You can PM me anytime......as I'm here most of the time now that it's summer and I'm not working.
My family isn't supportive of my illnesses...of course none of them have ever had these problems either! Luckily I have a great husband who is very supportive. (((((BIG HUG))))) I hope you get to feeling better soon! Roxie
Double Spinal Cord Stimulator surgery 8/09
Unsuccessful MiniArc sling surgery 12/07
Dx'd Hypothyroid
Dx'd Chronic Axonal Neuropathy & Myopathy
June 2007
Dx'd IC May 2006 (after suffering for 25+ yrs!)
First Cysto 1979
First Hydro 1981 (Many treatments since then!)
Collagin"Durasphere" injections for urethra
Gall bladder surgery Aug. 2004
Gastric Bypass Dec. 2004
Dx'd: Barrett's Esphogus July 2004
Dx'd: Vaginal Atrophy 2005
Bladder surgery 2000
Dx'd: IBS 2000
Hysterectomy (fibroids) 1999
Laminectomy 1989
Dx'd: Degerative Disk Disorder 1989
For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:Comment
-
HI I forgot to mention, You might try Freeze Dried Aloe Vera (you can buy it through this site and I've been using Aloe Vera for 3 yrs now and it works great for coating and rebuilding the lining of the bladder--like Elmiron but naturally). Roxie
Double Spinal Cord Stimulator surgery 8/09
Unsuccessful MiniArc sling surgery 12/07
Dx'd Hypothyroid
Dx'd Chronic Axonal Neuropathy & Myopathy
June 2007
Dx'd IC May 2006 (after suffering for 25+ yrs!)
First Cysto 1979
First Hydro 1981 (Many treatments since then!)
Collagin"Durasphere" injections for urethra
Gall bladder surgery Aug. 2004
Gastric Bypass Dec. 2004
Dx'd: Barrett's Esphogus July 2004
Dx'd: Vaginal Atrophy 2005
Bladder surgery 2000
Dx'd: IBS 2000
Hysterectomy (fibroids) 1999
Laminectomy 1989
Dx'd: Degerative Disk Disorder 1989
For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:Comment
-
Thanks Christine and Roxie. It just helps knowing someone out here knows how I feel and what I am going through.Comment
-
Oh we sure do! I had a big flare yesterday and I'm sitting at work still not feeling completely better so we know how you feel!Christine
I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
I have tried every oral medication as well as rescue instills and DMSO.
I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)
Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
Also proud mom to the best Bullmastiff on earth, Claus
Comment
-
((((((((((hugs))))))))))
You know stress is my main trigger point...I am taking Cymbalta for stress and depression it seems to really help when I start to fall apart.. Good luck and I hope this will pass soon
RondaHugs
Ronda
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:
http://www.ic-network.com/handbook/
Diet Reference Sheet:
http://www.ic-network.com/diet/icndi...tsheet0909.pdf
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.
Comment
-
in the right spot
You are definatley in the right spot.
Stress flares (or those out of the blue..no apparent reason flares) seem to be the hardest ones to get under control.
But baking soda & water
hot bath w/ bathing soda
hot mint tea
and a humprey bogart movie
is my prescriptionQuit ELMIRON due to hair loss
Cystoprotek ROCKS!
find me on FACEBOOK -
search my email [email protected]
Current Meds:
AM Cystoprotek & ATARAX 50mg
Dinner CYSTOPROTEK
PM Elavil 25mg
Comment
-
HI Pomluvr....We all have our days on here! I'm dealing with a new malady....nerve damage......it's always something....but together.....we manage to get through it! Take care......Roxie
Double Spinal Cord Stimulator surgery 8/09
Unsuccessful MiniArc sling surgery 12/07
Dx'd Hypothyroid
Dx'd Chronic Axonal Neuropathy & Myopathy
June 2007
Dx'd IC May 2006 (after suffering for 25+ yrs!)
First Cysto 1979
First Hydro 1981 (Many treatments since then!)
Collagin"Durasphere" injections for urethra
Gall bladder surgery Aug. 2004
Gastric Bypass Dec. 2004
Dx'd: Barrett's Esphogus July 2004
Dx'd: Vaginal Atrophy 2005
Bladder surgery 2000
Dx'd: IBS 2000
Hysterectomy (fibroids) 1999
Laminectomy 1989
Dx'd: Degerative Disk Disorder 1989
For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:Comment
-
I hope your flare passes quickly.
Natalie
I am multi-diseased with : MS, IC, IBS, and PDF
Diagnosed with IC - May 2006 IC symptoms : burning and frequency
Diagnosed with MS - March 2004 MS symptoms numbness in arms and legs, muscle weakness, major lack of bladder control and increasing bowel control problems. I wear Depend underwear 24/7.
Diagnosed with IBS - Sept 23, 2008
Diagnosed with PFD - Oct 1, 2008
Divorced Oct. 2009
IC Meds
Elmiron
Hydroxyzine
Elavil
Lortab for pain
Uristat
MS Meds:
Betaseron
Novantrone
Corticosteroids
Skelaxin ( muscle relaxer)
Neurototin for pain
"For God so loved the world, that he gave his only begotten son, that whosoever believeth in him shall not perish, but have everlasting life." -John 3:16
The Serenity Prayer:
God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.Comment
-
word.
I have the same thing...I will be in remission for a while and then BAM! It's like every time I am in remission I kind of forget about the IC until it inevitably sneaks up on me. I literally woke up this morning in pain and could use some scream therapy myself!
feel you. Hope it lets up a.s.a.p.
Diagnosed: December '06
Meds: Urised (looking for more non-invasive options)
I did not have any flares in Caracas. Patch explained this phenomenon to me as a type of "reverse" healing. When all of your energy and love is focused upon abating the pain of others, you, in turn, may heal.
"Doctor Yaso" (Caracas, Venezuela) and "bolaroja" (Lima, Peru)
Comment
Comment