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08-17-2006, 02:24 PM
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#1
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Support Volunteer
Join Date: Oct 2005
Location: Central, NY
Posts: 2,827
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3 MONTH MARK (Indiana Pouch and Urethrectomy)
I am at the 3 month mark for my bladder reconstuction/urethrectomy and creation of the Indiana Pouch. I have not posted to my journal for a few weeks due to some personal troubles that are not directly related to my bladder reconstruction. I thought I would post here to update anyone that is reading my journey. I have my first follow up in September for my Reconstuction (but I have to double check to make sure) If I still have the appointment, my mom and dad will be taking me to the Cape for a week and then onto NYC for a follow up with my Surgeon. Things have been going well. Knock on wood and be realisitic here. I am still recovering from the surgery. I am going to have to go into physical therapy if I want to live as close to a normal life as one in my situation can. My back muscles need some strengthening. They are weak. I am having trouble holding my whole weight up and it's causing some back distress. Other than that, at the moment, I am doing well. I've had a bit of a rash around the outside of where my stoma covers go. We are still trying to find a treatment that makes it go away. Right now I am trying a heavy duty streriod cream. They have ruled out Yeast at the time being. I've been treating it for yeast for over a week and it's not responding. At the request of a very close friend of mine, I am going to look into seeing a Dermatologist in case the rash persists. The bladder is working well and holding up to over 1,000cc's every 4 hours, depending on how much I am drinking. The phantom urgency comes and goes with Ovulation but it's controllable with Lyrica and Keppra combined. I take the Keppra only when I need it, kind of like a PRN (as needed medication). I try to dwindle down to the Lyrica only, whenenver I can. I've been really tired due to stress and I've been really depressed, thus why I have not updated my journal. But I wanted to let anyone who is interested that I am so glad I did the Reconstuction and had the Indiana Pouch put in! I am so glad I am not abusing that Urethra every 20 minutes. It's been quite restful at times. I am happy and hope that this trend of good bladder health continues onward and upward! I am still kicking and going strong. I just need to get the rest of my life in order and I will be back up and running with things!
Happy with my surgery at this time! I think I am doing well for only being 3 months out. I just need to keep my chin up. 
My journal has been updated with a 3 month mark photo.
Kara
__________________
TO VIEW MY CURRENT AND ONGOING VIDEO DIARY OF MY PUDENDAL NERVE DECOMPERSSION OPERATION AND RECOVERY, YOU CAN VISIT My Facebook Page:
http://www.facebook.com/profile.php?id=1158566812
You can also view my CURRENT PHOTO ALBUMS and some other secrets about me. Once you sign up, I'll add you as a friend if you mention you are from the ICN. It's FREE
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)
Unrelated to my Indiana Pouch and Urethrectomy, which were very successful and have improved my quality of life to a much better degree, I’ve also been diagnosed with a very painful condition known as Pudendal Nerve Entrapment, with Vestibulodynia. It's a very poorly understood condition that could have been treated years ago had we known what it was. To learn more about PNE, symptoms, diagnosis, causes, and treatments feel free to visit: [b] http://www.pudendalhelp.com/home.html
"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/
Last edited by Kara29; 08-17-2006 at 02:33 PM.
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08-17-2006, 04:38 PM
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#2
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ICN Member
Join Date: Dec 2004
Location: Texas
Posts: 5,040
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Kara
It's sounds like things are going well and I'm glad to hear you in good spirits with postitive outlook for the future. I pray that you continue to improve and get this rash under control, if it's not one thing it's another!
Thank you for your prayer for me. 
B
__________________
Best wishes,Bri 
In remission since Aug 2009! 
onset of sxs Nov 04
dxd Nov 05
things I've had success with for IC & VV: pyridium, elavil, tylenol 3, ibuprofen, lidocaine gel and patches, cold packs, heating pad, diet, lots of water
what helped me get to remission:stress reduction, diet, time
http://www.ic-network.com/handbook
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08-17-2006, 05:22 PM
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#3
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ICN Member
Join Date: Jun 2005
Location: New Zealand
Posts: 421
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Nice going Kara! It's quite understandable you might be a bit depressed at the moment. You've been through such a traumatic few months my dear.....remember that! I just bet as the months go by and you're getting better and better you'll start to feel your spirits lifting as well. Take care.
Hugs
__________________
~ Lynne ~
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08-18-2006, 01:27 AM
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#4
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Guest
Join Date: Jan 2006
Posts: 2,413
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Kara,
I know it has been rough going for you for the last few years and particularly the last few months, but I really think that once you get this rash taken care of that you will be on the upswing and that better days will be ahead for you.
You should be very proud of yourself for handling all that you have with such grace and tenacity. Most would have given up by now, but you have really stuck it out. Persistance does pay off, and I just know that not long from now, we will have to go over to the "Sucess Stories" board to read about you!
Hope the rash clears up soon! (And get yourself to a dermatologist!!!) Love and Hugs, Amy
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08-18-2006, 02:55 AM
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#5
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ICN Staff
Join Date: Mar 2000
Location: Junction City, Oregon, USA
Posts: 26,114
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You have come so far --- hopefully you'll be back to your old self very soon.
Warm hugs,
Donna
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08-18-2006, 01:26 PM
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#6
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Support Volunteers
Join Date: Mar 2004
Location: Vermont
Posts: 1,223
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I happy to read that things are finally coming around and you are on your way back to the land of health. May your journey continue in this positive manner. Judith
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08-21-2006, 04:28 PM
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#7
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IC Friend
Join Date: Aug 2003
Location: somerset pa
Posts: 50
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Kara,
I have not posted in a long time and I used to post a few years ago and I stopped. I just want to say how amazing you are. You have suffered so much yet you have perservered and kept going. Had I been in your shoes I dont know if I could have. I thank God that I have a very very mild case of IC that is controled with diet and I take Uriset. I used to get the instills but havent had them for along time. I do very well. I flare every now and then but it goes away pretty quickly and I can usually eat and drink what I want. I just wanted to say I think your courage is amazing. 
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08-21-2006, 05:47 PM
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#8
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Support Volunteer
Join Date: Oct 2005
Location: Central, NY
Posts: 2,827
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Thank You!
Sweettabby,
Thank You for your thoughfulness. It's nice to post something encouraging to let people know we can do this! I'm glad to hear your IC is mild and that you are doing well!
Thanks to ALL of you who sent along encouraging words!
Kara
__________________
TO VIEW MY CURRENT AND ONGOING VIDEO DIARY OF MY PUDENDAL NERVE DECOMPERSSION OPERATION AND RECOVERY, YOU CAN VISIT My Facebook Page:
http://www.facebook.com/profile.php?id=1158566812
You can also view my CURRENT PHOTO ALBUMS and some other secrets about me. Once you sign up, I'll add you as a friend if you mention you are from the ICN. It's FREE
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)
Unrelated to my Indiana Pouch and Urethrectomy, which were very successful and have improved my quality of life to a much better degree, I’ve also been diagnosed with a very painful condition known as Pudendal Nerve Entrapment, with Vestibulodynia. It's a very poorly understood condition that could have been treated years ago had we known what it was. To learn more about PNE, symptoms, diagnosis, causes, and treatments feel free to visit: [b] http://www.pudendalhelp.com/home.html
"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/
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08-22-2006, 02:57 AM
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#9
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IC Friend
Join Date: Jun 2004
Posts: 4,303
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I agree with everyone, you are an amazing, inspiring person! I think the worst is behind you, and I hope so much that you continue to get better with each day! I hope the dermatologist can help with the rash, too, that must be uncomfortable. 
Blessings,
Lori
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08-22-2006, 03:32 AM
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#10
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IC Friend
Join Date: Apr 2004
Posts: 1,782
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Quote:
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Originally Posted by Kara29
I am happy and hope that this trend of good bladder health continues onward and upward!
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I hope so to! You've made it so far & have been through so much! I hope that the struggles in your personal life get better.
__________________
,
Karma
Dream with the feathers of angels stuffed beneath your head - Clutch
IC, PFD, IBS, Fibromyalgia, MPS, Migraines, Allergies, Scoliosis, Bi-polar, Vulvodynia......
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08-22-2006, 05:37 AM
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#11
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Support Volunteer
Join Date: Oct 2005
Location: Central, NY
Posts: 2,827
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The rash is gone!
The rash went away over the weekend with the streiod cream my primary gave me. It went away over night the first night which was Thursday. So I am rash free. One thing down! Keep on going......
Kara
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08-22-2006, 05:51 PM
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#12
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ICN Member
Join Date: Jun 2005
Location: New Zealand
Posts: 421
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Kara! Great news!
Hugs
__________________
~ Lynne ~
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08-23-2006, 04:14 AM
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#13
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ICN Member
Join Date: Jul 2004
Location: A toilet somewhere in Toronto, Canada
Posts: 874
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I'm so happy that this surgery has brought you some relief and freedom and hope it continues to do so for you
God bless 
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08-23-2006, 04:33 AM
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#14
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IC Friend
Join Date: Apr 2004
Posts: 1,782
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Yea! I'm glad the rash went away!!!
__________________
,
Karma
Dream with the feathers of angels stuffed beneath your head - Clutch
IC, PFD, IBS, Fibromyalgia, MPS, Migraines, Allergies, Scoliosis, Bi-polar, Vulvodynia......
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08-23-2006, 03:35 PM
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#15
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ICN Member
Join Date: Aug 2005
Location: Monahans. Texas
Posts: 358
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Happy to hear you are feeling better, and hopes that whatever your personal issues are that they too clear up soon. Call me and we'll chat, alots be going on here too.
Sonja
__________________
Proverbs 17:17 A true companion is loving all the time and is a brother/sister that is born for when there is distress
Support American Cancer Society Relay for Life
http://Relayforlife.org
Living life on hope and a prayer.
To read me and my family's story
http://ic-network.com/patientstories/sonja.html
Spinal surgery 04/06
Interstim implanted12/04
interstim removal 12/05
Hysterectomy 1998
Bladder surgeries due to hysterectomy,'98,99,00,01
DXx with IC w/ Hunners 1999
Chronic Pelvic pain
Chronic fatigue
Fibromyalgia
Depression/post traumatic stress syndrome
IBS
Migraines(OOPPSS WRONG) DX on August 28 with focal seziures, NOw on Zonegram for seizures
Treatments...Done 'em all, but still looking out for the one that is my magic bullet.
Weekly or as needed instills w/ elmiron/lidocaine/bicarb
Meds:various pain meds,Soma (muscle relaxant)
Lunesta,Premarin,Clonazepam,Inderall,Relpax,Cymbalta
and a few others I'm sure,depending on how good I have been on my IC diet.
Trying to keep a positive attitude, in a negative world.
Best treatment of all, Good Friends who Understand 
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