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04-22-2006, 12:29 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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One more week left and then I go for my Reconstruction.
Hello to Eveyone, I hope you are having a pain free weekend!
I am scared to death. I have one week left before we leave for NYC for my Reconstruction. I have updated my Blog. My major fears are the bowel prep. (drinking the gallon of GoLytely is sooooooo hard, the NG tube and how I will wake up after surgery. It could be an Ileal Conduit or an Indiana Pouch. I want the Indiana Pouch, that is my wish but as we all know in life we don't always get what we wish for. Judith, I did get your message about the NG Tube last night and it eased my fears. I will ask for the numbing spray if it has to stay in for a long time. I guess I will just have to push through it like I did the first cystectomy. I am just freaking out right now. I will have 4 surgeons working on me. A General Surgeon, GI Doc, A Pelvic Urologic Reconstuctionist, and his Partner.
Thank You for all of your love and continued support!
Love and Hugs,  
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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04-22-2006, 02:07 PM
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#2
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Support Volunteers
Join Date: Mar 2004
Location: Vermont
Posts: 1,223
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Sounds like you will be in good hands and that they have all the bases covered! The waiting is the worst, because you have time to think and worry. I dont envy you with the bowel prep, but as you know you have to do it, so they have nice clean bowel to work with. Just ask them to chill the Go-Lytely it is easier to get down if it is cold. Do you do the prep at home or in the hospital? I was always admitted the night before, so they gave me the prep. Don't forget to pack things like hard candies to suck on after the surgery, a pad of paper to write down questions and something to write with,your favorite hand/body lotion,chapstick/lip balm, your favorite pillow since hospitals always have crummy ones,and anything that will make you feel better or get your mind off things.Glad you got the mesage before it disappeared! I think the stuff is called something like benzocaine or something with caine on the end on the end of it!. It comes in a yellow bottle and has a metal tube that is curved on the end so you can really aim it at your throat. Any other questions I can answer? I have done this so many times, I know lots of tricks or things to ask for, lol. I really think you are going be fine.Hugs, Judith
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04-22-2006, 02:21 PM
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#3
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Registered User
Join Date: Mar 2006
Location: South Dakota
Posts: 279
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Kara,
I'm glad your wait is almost over! Surgery is scary, but it will be worth it when you feel better!
We'll all be thinking of you and praying for you as you continue the countdown!
Amy (Mrs. B) 
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04-22-2006, 02:28 PM
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#4
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Support Volunteer
Join Date: Oct 2005
Location: Central, NY
Posts: 2,827
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I have to do the bowel prep at my hotel (apartment)
Judith,
I have to do the prep at the apartment my family and I are staying at across from the hospital. I did my first cystectomy the same way. The Bowel Prep was done in the privacy of my home. This time it will be at the hotel/apartment we are staying at. I will spend the whole day and night on the toilet. My close friends will be on the phone trying to make me laugh as the day passes. I couldn't do it without them!
HUG
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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04-22-2006, 02:40 PM
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#5
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ICN Member
Join Date: Jun 2004
Location: utah
Posts: 230
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04-22-2006, 03:11 PM
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#6
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No longer active
Join Date: Jan 2003
Posts: 5,656
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I am so proud of you through all of this. You are one strong lady. I just can't wait to see you up and telling us a;; how wonderful your feeling now.
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04-22-2006, 03:34 PM
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#7
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IC Friend
Join Date: Mar 2004
Location: Florida
Posts: 184
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Im always here---even tho Im not....
Kara
Sweetie....I want you to know I think of you OFTEN! All the time for that matter...I know you havent heard from me and I hope that you dont take it personally...I have been VERY busy. FAMILY has moved in with us (my hubbys mom) and that is something to adjust too, she is great and kids are thrilled...but still its adjusting for everyone!!!! So I havent been THERE for anyone these days PLUS Im feeling REAL bad latley. DMSO treatments went bad and they quit them..I reacted to them! BADLY! Anyway its always something adn like you Im always at one dr or another these days...that and everyone in my family has been SIVK for weeks w the FLU (SOOOO I APOLOGIZE FOR NOW CALLIN OR EMAILING YOU). I do come here periodically to read about you though! I want to send you off for your surgery witgh ALL MY LOVE and know that your such a special person. I wish I could be 1/2 as strong as you are..your simply incredible and will get through this with flying colors!!!!! Your strength is amazing! I do wish you for LITTLE pain and no more suffering..GOD knows you have suffered enough! I pray for you always and will continue to do so...PLEASE know that  and always am thinking of you. Hope you understand!
Love ya sweetie,
Chris
__________________
IC (diagnosed 2003)
Fibromyalgia (sp?)
Had Hysterectomy 2002 - Prior to be diagnosed with IC. Was thought to have had Adenomyosis and dr did hyster BUT after recovery th epain returned, hence after many tests diagnosed with IC.
Suffer daily with pain  but through it all my husband and 3 beautiful children, 11 year old son, 8 year old son and 4 year old daughter are all here for me. My 11 and 8 year old sons plan to grow up and become doctors and FIND a cure for IC!(Whether they do or not the fact they say that really makes this MOM proud!)
I get as much support from my husband as he can possibly be able to give me.  Its very hard on all of us, not just me with the pain. They watch me suffer every day and see me cry so often, along with taking so many meds..it all deeply affects them just the same!
My best medicine is the love I get from my family and my friends  Having a disease like this, or like THESE really makes you see who is TRULY your friend and/or your family. Those that are REALLY there for you through thick and thin (and believe me there are many many "thins" especially with my moodswings  , with being down so often due to the amount of pain I experience everyday of my life...so Im extremely THANKFUL for those FEW "REAL" FRIENDS and those "SELECT" Family Members that are THERE just when I need them, and for NOT judging me or thinking of me as weak, I KNOW it is EXTREMELY hard on them to see me suffer this way, as well as seeing me taking so many prescription medications!)
The hugs, the support and the sympathy is the best they all can give to me, and they do! That extra hug really goes a LONG way!!!
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04-22-2006, 04:54 PM
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#8
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Support Volunteers
Join Date: Mar 2004
Location: Vermont
Posts: 1,223
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Kara, if it was me doing the bowel prep in an unknown place, I would bring my favorite toilet paper! I only use really soft t.paper, can't usually stand the stuff they have in hotels and other public places. You are very fortuante to have so many help you through teh process, though for me, I was glad to be left alone while going through the bowel prep. I am not at my best, nor do I feel like talking when I take that stuff. We all do what we have to get through these things in the way that works best for each of us. Do you have any questions for me now that it is getting closer?
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04-22-2006, 08:19 PM
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#9
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Guest
Join Date: Jan 2006
Posts: 2,413
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Kara, I am so happy that you are almost there. Just a little while to go!! I am counting down the days with you! You are so incredibly strong! I am SOO proud of you for being so strong going thru all of this, and everthing else that you have. You are a model of strength, courage and grace thru adversity. I wish that I was as brave as you are. I am so very proud of you. I will be continue to pray for you throughout everything, although I am just certain things will turn out well. If you want to talk on bowel prep day, I will spend the day on the phone with you to keep you occupied on the toilet. (You know that I dont care!) You are just like family to me, and there is nothing I wouldnt do for you. All you have to do is tell me what you need. You have always been there for me, and I will be there for you too! Love, Amy
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04-23-2006, 01:35 AM
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#10
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ICN Member
Join Date: Jul 2004
Location: A toilet somewhere in Toronto, Canada
Posts: 874
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Not sure if you've seen it yet but here's a link that has a ton of tips to make bowel-prep easier http://www.endometriosis.org/bowelprep.html
Good luck and God bless with everything, and just remember, soon you'll have no more IC and no more urethral pain! 
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04-23-2006, 02:45 AM
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#11
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Guest
Join Date: Apr 2006
Posts: 33
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good luck on your surgery.
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04-23-2006, 02:47 AM
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#12
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Support Volunteer
Join Date: Oct 2005
Location: Central, NY
Posts: 2,827
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Thank you so much Christine, this is AWESOME!
Christine,
Thanks for such helpful inofrmation in such a needed time! What a great article! Thank You, Thank You Thank You! Precioous!
HUGS,
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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04-23-2006, 02:54 AM
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#13
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Support Volunteer
Join Date: Oct 2005
Location: Central, NY
Posts: 2,827
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Hehe.....
Amy, 
Yes you will be on the phone with me. Haha. You were one of the ones I was talking about because I know you don't care. Jessica does not care either. Allen said he'd sit on the floor with us. Judith, I will bring the best toilet paper I can find. What a great TIP! And yes as we get closer I will have more questions for you I am sure. I will ask them as we go.
Thank You all for what you do for me and the wonderful support that you show through this whole process. It makes it so much easier on my mental status to know that we can laugh at some of this serious stuff.
I have some Zofran so I don't throw up the Bowel Prep. I didn't throw up last time so hopefully I won't this time.
Love you All!
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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04-23-2006, 04:20 AM
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#14
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ICN Staff
Join Date: Mar 2000
Location: Junction City, Oregon, USA
Posts: 26,114
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I've been thinking of you --- just think --- only one more week and you will be past the surgery and recovering.
Sending gentle hugs,
Donna
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04-23-2006, 04:44 AM
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#15
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IC Friend
Join Date: Dec 2005
Location: Connecticut
Posts: 459
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Good Luck on your surgery Kara. Gosh, Judith sure does have alot of GREAT tips for making it easier on you (I've done many of them myself, and they really do help). I would follow EACH ONE as it should really help you to get through this! The countdown begins......dadadada...... it'll be here fore you know it!!! You and your family are in my thoughts and prayers...
__________________
 Thank You all so much to everyone here for all your sharing, caring and support! 
 < My "Bear" 
CurrentTreatments:
Started herbal teas 6/2/06 Marshmallow root, comfrey root, and catnip. 6/25/06 added Mullein Leaf Powder to tea.
IC Diet
Hydroxyzine 50 or 100mg at night (Is restarted)
Zoloft 100mg 4/8/07 (Is restarted)
Klonopin 1/2 mg 4 X Day (started 3/17/07)
Past Treatments: Amitriptyline, Neurontin, Hytrin, Heparin instills (was Dc'd after 5 weekly tx's due to severe urethritis), Superior hypogastric plexus block, E-stim, Elmiron instills (started 4/18/06-Dc'd 5/30/06 due to severe urethritis/infection requiring foley cath @ home 4 days), Oxycontin (oxycodone) (4/18/06)-pain (Dc'd 5/31/06), Levsin S/L (hyoscyamine) (3/17/06)-antispasmotic (Dc'd 5/31/06), Elmiron (1/24/06)-(Dc'd 6/25/06), Prelief, Zanaflex 4mg for PFD (Dc'd 10/1/06), CystaQ 1 in am & 1 in pm with food(started 5/12/06-increased to 2 in am & 1 in pm 9/20/06---Dc'd 10/18/06), Lyrica (started 10/26/06 up to 600 mg-Dc'd 12/4/06 due to urinary retention), Vicodin (hydrocodone) ES PRN for pain (Dc'd 1/4/07); Cymbalta 30mg (start 1/17/07) up to 60mg in am (1/26/07) (D/c'd 3/17/07); Ativan 1mg(Lorazepam)- PRN Anxiety (changed to Klonopin 1/2mg 4Xday 3/17/07); Pyridium (phenazopyridine) PRN-bladder analgesic; MSM (6/12/06) 1000mg after breakfast & dinner (Dc'd 3/15/07); Acidophilus (Natrol) 100mg. 1 capsule 1/2 hour before breakfast (5/20/06) (Dc'd 3/17/07)
Added BACK in - Atarax (hydroxyzine) (started 4/6/06 Dc'd 5/31/06) Restart 50mg at night 8/18/06, up to 100mg at night 1/4/07. Zoloft 100mg-Depression (Dc'd 7/25/06) Restart 4/8/07) 100mg.
Dx'd: Dec 05 (Positive PST in November and positive cystoscopy in Dec) Symptoms: Pain, frequency, urgency & retention
My Myspace page - http://www.myspace.com/42620225
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