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09-15-2006, 02:15 AM
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#1
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ICN Staff
Join Date: Mar 2000
Location: Junction City, Oregon, USA
Posts: 26,114
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Reposted for new member
mum43
Registered User
Join Date: Sep 2006
Posts: 3 Hello I'm new too!!
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Hello I am new to this site and am pleased to a part of the forums.
I live in Kent uk and am married and have 4 grown up kids and 5 grandchildren.
I have had IC and PBS for several years and am now about to have 2 major ops done.I'm in some serious pain and am incontinent among other stuff.
I am having a Sub-total Cystectomy with a Neo-bladder and Mitrofanoff, and a Hysterectomy done in october.
I am constant pain and I think the doctors have given up trying everything.
I have tried all medication, including Elmiron and installations etc.
And now the proff has decided the whol lot has to come out and asap too.
I am sorry that there are so many of you (like me) who are suffering with these conditions.
I am tired all the time (don't get alot of sleep)as I'm up and down to the loo all night.
I'll be glad when it's all over with and I can be normal again.
If anyone wants to talk feel free.
all the best
mum43
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09-15-2006, 03:07 AM
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#2
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ICN Member
Join Date: Sep 2004
Posts: 1,530
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Me too!!
Welcome!!! There are several of us here that have had bladder removal and are doing very well..I am one of them!..  .... I had mine done in Dec and I went back to work this week ( Piano teacher) and I am going to start school to become a medical assistant on Oct 4th.
I feel wonderful and I love my new pouch! I have NO IC symptoms and NO pain!!! I pee every 4 hours and get up once at night...my new pouch now holds 2 2/3 cups of urine...or 700 cc's!!! My old one...2 1/2 ounces or 83 cc's...My life had improved a million percent and even tho the recovery was rough I would do it again in a second!! I have 4 children, the 3 oldest are my step-children, all grown...the baby will be 21 next week and I have 3 grandkids and one due in Nov! Looking forward to hearing from you soon... 
__________________
After suffering with IC for 40 years, my bladder was removed in Dec 05...YAY!
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09-15-2006, 04:05 AM
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#3
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ICN Member
Join Date: Sep 2006
Location: united kingdom
Posts: 195
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Well to you!!
Hello,
I am so pleased for you,
Was you as nervous as I am right now.
I am having my op 30th october, in london.
I have a friend who had the op last year and is pregnant, I am so pleased for her.She has been so much like all of us have.
I am having a Hysterectomy too,my womb is damaged.(good job I had all my kids)The coil is causing major bleeding and is stuck. 
Totally pain free! wow!! I cannot wait until I can have a nights sleep without going to the toilet 10-15 times in the night.
No more incontinence pads(I hate them things) or running for the nearest toilet when I'm out.
I will be glad to be better and be able to find a job(not worked for 23 yrs)after all this time being so ill that I cannot even walk up the road, without being in excruitating pain and leaking urine.
I shall have to buy my self a alarm clock now, so that I remember to wake up to empty my new bladder.And no more Morphine and other pain killers.
How does' it feel to be a new person now that's it all over??
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09-15-2006, 04:14 AM
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#4
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ICN Member
Join Date: Sep 2004
Posts: 1,530
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Sometimes I forget to pee! Hahahhaa....hubby says I should get a watch with an alarm that goes off every 4 hours so I can keep track better...I eat and drink whatever I want..I just had my 2nd cup of coffee...yum...yes I was scared, but mt life was so poor a year ago..I couldn't walk my dogs..I was up 7 -10 times a night and every 30 minutes during the day..not anymore....I feel GREAT!!! I walk my dogs at least a mile every day..and I will be starting school again after 28 years...
__________________
After suffering with IC for 40 years, my bladder was removed in Dec 05...YAY!
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09-15-2006, 04:23 AM
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#5
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ICN Member
Join Date: Sep 2006
Location: united kingdom
Posts: 195
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You are so very brave, I am terrified.
I knew I would need this surgery one day, but, I was not expecting them to removed my womb also.
I will be empty in there  not sure how hubby will feel towards me either.been married 28 yrs.
I know he will support me through the ops and after while I recover.
The thing is we are finacially in dire straits, and while I recover he will have to look after me and take me to the hospital etc.
We will not get any help for 3 months it will be christmas by then!!
I am sure we will work something out.
Have you been married for long?or is that too personal?? 
you do not have to answer that if you prefer not to.
Can you do everything now you are well again?
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09-15-2006, 04:34 AM
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#6
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ICN Member
Join Date: Sep 2004
Posts: 1,530
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We had our 14th anni in July.... 
I had my surgery Dec 23rd..it was THE best time to have it done as most people scheduled their surgeries after the holidays..I only had a roommate for 3 of the 9 days I was in the hospital.... I still have my uterus, but no urethra no bladder and no appendix....I can do anything now..I am thinking about a yoga class if I can find a place close enough...
__________________
After suffering with IC for 40 years, my bladder was removed in Dec 05...YAY!
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09-15-2006, 04:41 AM
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#7
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ICN Member
Join Date: Sep 2006
Location: united kingdom
Posts: 195
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I am expecting to stay in for 10 days then come home for 6 weeks then in again for 2 days for the rest of the 2nd part to be done.
I shall be glad when it's all over.
I can have a holiday then too. 
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09-15-2006, 04:45 AM
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#8
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ICN Member
Join Date: Sep 2004
Posts: 1,530
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You have a very good outlook and that's what will carry you through your recovery...when is the first surgery?
__________________
After suffering with IC for 40 years, my bladder was removed in Dec 05...YAY!
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09-15-2006, 04:49 AM
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#9
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ICN Member
Join Date: Sep 2006
Location: united kingdom
Posts: 195
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Thankyou,
you have been so helpful to me.
I go in for a bowel prep on the 29th october and have the hysterectomy a nd cystectomy both on the 30th october. 
I am having a Mitrofanoff put in with a ortopic neo-bladder using bowel.
Sounds complicated does'nt it??
Thanks to people like you I understand a lot more about the surgery and want to thank you all for your help.
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09-15-2006, 04:56 AM
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#10
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ICN Member
Join Date: Sep 2004
Posts: 1,530
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You are so very welcome.. ..I have a continent urinary diversion, an "Indiana Pouch"...I have a little stoma to the right of my belly button where I use a 16 french coude tip cath to "Pee"....it's awesome!!! I didn't have a neobladder since my urethra was totally worthless thanks to the IC...
__________________
After suffering with IC for 40 years, my bladder was removed in Dec 05...YAY!
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09-15-2006, 05:07 AM
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#11
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ICN Member
Join Date: Sep 2006
Location: united kingdom
Posts: 195
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I was offered a stoma and declined it because my surgeon said that sometimes if they are fogotton about, they burst.
I was then offered the neo and mitrofanoff because my ureter is so sore I cannot self catherterise anymore.
I go to my surgery when things get bad and I cannot do it on my own(thats if I cannot pee out of the normal channel.)The doctor empty's my bladder for me.(she numbs the ureter first to make it less painful).
I am so glad I do not have to wait for too much longer for the op now.
6 weeks will go fast,I was told 27 weeks ago about the surgery and it has flown by very quickly.
I will chat to you tomorrow if it is ok with you.
Have to go to the doctors to pick up my pain killers.
I have to fill in forms because they are a controlled drug.
Take care and thankyou for chatting to me
mum43
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09-15-2006, 05:12 AM
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#12
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ICN Member
Join Date: Sep 2004
Posts: 1,530
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O.k...have a great day!
I don't understand about the stoma being forgotten and bursting??? You can't forget about it since that's where you pee from...there's no way it can burst....
__________________
After suffering with IC for 40 years, my bladder was removed in Dec 05...YAY!
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09-15-2006, 06:05 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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I had the Neobladder and switched to an Indiana Pouch
I had the Neobladder that you are having done and then had to switch to an Indiana Pouch becaue my urethra was damaged and I could not use it anymore.
If you have any questions feel free to ask. I had the Neobladder for 4 years and I just had My Indiana Pouch with stoma done in May. I have never heard of a stoma bursting?
You can read all about my journey through bladder removal twice below. I just tell it how it is. I am having a few problems but I am sure by next year at this time they will all be straightened out. It is related to hormones not the bladder removal.
Sincerely,
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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09-15-2006, 06:08 AM
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#14
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ICN Member
Join Date: Sep 2004
Posts: 1,530
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Hi Kara!!!! How are you today?
__________________
After suffering with IC for 40 years, my bladder was removed in Dec 05...YAY!
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09-15-2006, 07:25 AM
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#15
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Support Volunteer
Join Date: Oct 2005
Location: Central, NY
Posts: 2,827
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Hi Lesa
Lesa,
PM me if you'd really like an update.
I hope you are having a good day!
Kara
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