Thread: Flare This Week
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04-11-2008, 07:12 PM #1
Flare This Week
Hi everyone! I had a bit of a flare this week, but seem to be doing better now. I'm not sure why I didn't post this when I was in the midst of peeing every 15 minutes on Tuesday. I guess I don't start threads too often and didn't want anyone to feel sorry for me as I really think I have a milder case of IC than most on here. I do have a back up "rescue medication" (as I call it) that I use when I'm in a flare - Prosed DS. I only use it when I'm desperate. Sometimes I use Pyridium Plus - but the last time I saw my uro he gave me Prosed DS samples- which I think I prefer over the pyridium. I think it helped bring my symptoms down to a more reasonable level. I had quite a bit of pressure and this "very urgent oh my gosh I'm going to pee my pants" feeling often on Tuesday and a bit on Wednesday. The weird thing was, when I'd get to the toilet, I actually peed a lot with a very steady stream (not like usual). It was just rather annoying that I had to go like every 15 minutes to a half hour. After a while the pressure was a bit painful.
On Wednesday I woke up exhausted and my bladder was still irritated, so I stayed home from work. I slept a lot. I called my urologist's office to let them know I was in a small flare and taking the Prosed DS samples but that I only had enough samples to get me through to Thursday. My doctor wasn't in the office, but another doctor authorized them to call me in a prescription. They were very nice about it and when the lady from the office called me back, she told me the Dr. even gave me a refill on it. I took my last dose of prosed on Thursday late afternoon. I decided I would let it wear off and see if I would be okay without it. So far, I seem to be doing okay. I'm just still feeling really really tired.
I'm hoping to have a good weekend with very minimal discomfort. I consider myself lucky because I think this was a pretty mild flare (all things considered). I know there are so many IC'er's who experience so much more pain and discomfort during flares than this one was for me. I really admire all of you for all that you endure.
Thanks for listening,
Jennifer
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04-12-2008, 02:26 PM #2
I am sorry you've had such a rough week. I hope you are felling better by now.
TexasHoney
Let's keep praying for a cure.

IC Symptoms began in early 2001
Divorced : Sept 2002 (Partly due to IC)
Diagnosed with IC in April 2004
Most recent injury - Rupurtured Left Achilles Tendon
Wed Jan 28 2009 (Ice Storm Accident)
2nd Achilles Tendon Surgery - May 28, 2009 after re-injury on May 17
Other Injuries
Broken Left Ankle - July 2004 ( fell off ladder)
Broken Left Ankle (Again) - May 2005 (car accident)
Sprained Left Ankle - November 2006 ( fell off my aunts porch on Thanksgiving Day)
CURRENT MEDS
Elmiron, Percocet, Pyridium, Elavil
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04-13-2008, 05:18 PM #3
Thank you TexasHoney! I was feeling better for a couple of days, but not so good on Saturday and Sunday. I'm taking the Prosed DS again for a few days and we'll see how I feel. I'm having some lower back/kidney area pain. I'll keep my fingers crossed that I'll be feeling back to normal in a couple of days - well not completely normal because I do have IC - but back to how I was before this flare.
Thanks again,
JenniferLast edited by theclownster; 04-13-2008 at 05:53 PM.
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04-13-2008, 05:23 PM #4
Hi Jennifer
I hope you are feeling better real soon!
Take care!Current diagnosis
Severe IC, Severe Endometriosis(keeps growing back all over despite surgeries and treatment), Chronic ovarian cysts, Chronic Pelvic Pain Syndrome,Fibromyalgia,Inguinal hernia, bursititis of the hip, Migraines, IBS, Celiac disease, CROHN'S Disease, Chronic Constipation, Chronic anal fissures, Vulvodynia, Pelvic Floor Dysfunction, Pirisformis muscle spasms,vulvar vestibulitis, chronic insomnia, Burning Mouth Syndrome, Brain TUMOR, Chronic Lyme Disease,Temporomandibular Joint Disorder,Degenerative disc disease,Arthritis.
Allergies: Elmiron, Levaquin, Sulfa-Anaphylactic shock,Morphine, Doxyclycline,Cipro
Treatments I have tried:Bladder instillations, Oral meds-Elmiron, Elavil (amitryptyline), Hydroxyzine (Vistaril & Atarax), Ditropan, Levsin, Urispas, Urised, Pyridium, Cystoprotek, Desert HarvestAloe,antibiotics,Ultram,Neurontin,Valium,Tramadol,Lunesta,Ketor olac,Cipro,Meloxicam,Dilaudid,Morphine,Vicoden,Darvocet,oxycontin,Lyri ca,Cymbalta,Nortriptyline,Enblex,Baclofen,Clonidine,oxybutynin,Detrol, Nitroglycerine ,Vesicare,Sanctura(there are more but this is enough
)
Physcial Therapy, Cystoscopy with Hydrodistentions, Numerous Nerve Blocks, Neuromodulation-including Sacral neuromodulation(Interstim) and post-tibial nerve stimulation (Urgent PC-12week), Botox, bladder instills, physical therapy, natural(herbs)Current meds: Long list..just email if you are interested
Interstim implants--8 plus surgeries for them.
I am selling IC awareness bracelets, keychains, pens and pins..if interested please email me! ThanksFeel free to email me at mlzippy7@yahoo.com.
One day at a time
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04-13-2008, 05:54 PM #5
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04-13-2008, 06:24 PM #6
No matter how mild or how severe our IC is it still sucks when we get a flare and we all have the right to complain about it.
I hope that the Prosed DS works for you and your flare ends quickly. Even if you do have a mild case any increase in symptoms is never fun. Make sure to drink plenty of water and if you still don't start to feel better after a couple of days then maybe it's time to drop off a sample at the uro's office for them to culture to rule out an infection.
Christine
I have been diagnoised for 2 1/2 years. I have tried every oral med as well as rescue instills and DMSO.
1st hydro 4/07 which showed no visible signs of IC but I had 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. I am still feeling the effects of the hydro two weeks later.
This 2nd hydro proved that because no treatments have helped me that my IC has progressed
Am being seen by Dr. Hanno's office in Philly
None of my medicine or treatments are important anymore. One of our best IC sisters Barb has been taken from us too early. She was such a great friend to me, I feel like there is a part of my heart that will always be empty now that she is gone.
Proud wifey of Shane, mommy of Griffin, and step-mom to Logan, Gage and Miranda
Also proud new mommy to the best Bullmastiff puppy on earth


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04-15-2008, 04:52 PM #7
Thanks Christine! I'm feeling better - I think, but I don't feel back to myself yet. It kind of comes and goes - so I'm not sure. I really don't think I have a UTI as I don't have any pain when I actually urinate nor do I have any burning or leakage. Anytime I've ever had a UTI, peeing has been very painful with burning and/or I've had a slight amount of leakage after urinating. Before taking the prosed DS my urine was also almost clear in color and there is not any foul odor. I had my urine tested a couple times in March and it was clear. I will go ahead and get it tested again if I don't get completely better soon. I'm curious, can they test my urine and get acurate results since I'm taking the prosed ds? Does anyone know?
Thanks again for your support!
Jennifer
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04-21-2008, 08:00 PM #8
Hi there! A quick update - I seem to be feeling somewhat better. However, it seems to come and go. I feel better for a day or so and then I feel like I'm in the same flare again. I had an appointment today with my gynecologist for my yearly pap and went ahead and had her test my urine. They found a small amount of white blood cells so she sent it off to be cultured. She said with IC it could be that so she wanted to get the culture back to know for sure. If it shows infection, she will prescribe some antibiotics and if not, we will know for sure it's just my IC acting up. Also, getting my pap smear seems to have irritated me - YUCK! I've had some spotting and cramping along with additional pressure/discomfort coming from my bladder. I hope this doesn't last too long.
I'm keeping my fingers crossed that I feel better and stay better soon!
Jennifer
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04-22-2008, 01:54 AM #9
I hope you feel better very soon. Pap tests are a pain!
DonnaHave you checked the ICN Shop?
http://www.icnsales.com for US & Canada
http://www.icnshop.com for all others
Patient Help: http://www.ic-network.com/patientlinks.html
Diet list: http://www.ic-network.com/diet/2009icdietlist.pdf
You'll find my story at: http://www.ic-network.com/patientstories/donna.html
I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
Anyone who says something is foolproof hasn't met a determined fool
.....My Meggie.....

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04-22-2008, 03:30 PM #10
Thanks Donna! I'm starting to feel better - - at least I think I am.
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04-22-2008, 03:36 PM #11
Hi Jennifer
I am sorry you are feeling yucky! I hope your doctor is able to give you some answers and you start feeling better soon.
Take careCurrent diagnosis
Severe IC, Severe Endometriosis(keeps growing back all over despite surgeries and treatment), Chronic ovarian cysts, Chronic Pelvic Pain Syndrome,Fibromyalgia,Inguinal hernia, bursititis of the hip, Migraines, IBS, Celiac disease, CROHN'S Disease, Chronic Constipation, Chronic anal fissures, Vulvodynia, Pelvic Floor Dysfunction, Pirisformis muscle spasms,vulvar vestibulitis, chronic insomnia, Burning Mouth Syndrome, Brain TUMOR, Chronic Lyme Disease,Temporomandibular Joint Disorder,Degenerative disc disease,Arthritis.
Allergies: Elmiron, Levaquin, Sulfa-Anaphylactic shock,Morphine, Doxyclycline,Cipro
Treatments I have tried:Bladder instillations, Oral meds-Elmiron, Elavil (amitryptyline), Hydroxyzine (Vistaril & Atarax), Ditropan, Levsin, Urispas, Urised, Pyridium, Cystoprotek, Desert HarvestAloe,antibiotics,Ultram,Neurontin,Valium,Tramadol,Lunesta,Ketor olac,Cipro,Meloxicam,Dilaudid,Morphine,Vicoden,Darvocet,oxycontin,Lyri ca,Cymbalta,Nortriptyline,Enblex,Baclofen,Clonidine,oxybutynin,Detrol, Nitroglycerine ,Vesicare,Sanctura(there are more but this is enough
)
Physcial Therapy, Cystoscopy with Hydrodistentions, Numerous Nerve Blocks, Neuromodulation-including Sacral neuromodulation(Interstim) and post-tibial nerve stimulation (Urgent PC-12week), Botox, bladder instills, physical therapy, natural(herbs)Current meds: Long list..just email if you are interested
Interstim implants--8 plus surgeries for them.
I am selling IC awareness bracelets, keychains, pens and pins..if interested please email me! ThanksFeel free to email me at mlzippy7@yahoo.com.
One day at a time
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