Thread: Scared to death but so ready
01-11-2006, 07:16 AM #1
Scared to death but so ready
On Feb.9th I am having bladder reconstruction surgery and they are going to make me a new bladder out of my small intestintes.I have had IC for over 6yrs and for 9months I have been in constant flare up mode and I am so ready for some kind of relief and this Dr said that because my bladder only holds 70mm he feels reconstruction to make it hold 400 to 500mm will help with pain,burning,cramping sensation and constant going to the bathroom. I have heard good and bad things about this surgery.Has any1 out there had this surgery and what can expect. I understand that every1 is different but any Info would be helpful. The other stinky thing is that this surgery is on my B-day and I am hoping that this is going to be a good present of relief.
01-11-2006, 07:58 AM #2
So your planning on an augumentation where they make your bladder bigger with your small intestines???
I so hope it helps you....many prayers sent your way!Faith, Hope, and Love,
I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back! My hope story http://www.ic-network.com/patientstories/katrina.html
IC 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.
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email@example.com please contact me...I am here to help!http://health.groups.yahoo.com/group/ICinWI/ if your from WI please contact me!
01-11-2006, 08:01 AM #3
I do not know much about bladder reconstruction and removal, but just wanted to wish you good luck and my prayers.Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!
01-11-2006, 08:06 AM #4
I had it done. They made. me 2 Cecum-cyatic Plastic Bladders. They made it out of my Bowel. I had it done Back in 1983 and 1984. It was Part bowel and Part Bladder. It did not work for me so then in 1984 I had My bladder total removed and them they made a Ileo-conduit. That is made of my Bowel. Also my Last revisions was made out of my Transvwerse Colon.
Hope that I can Answer any of your Questions. Just let me know Okay.
01-11-2006, 08:26 AM #5
Debbie can I ask why your reconstruction didnt work? How are you doing now with the bladder removal? I have tried so many meds and so many treatments and nothing has seemed to work. Anything you can tell me so helpful and how long did it take for you to recover for the surgery. Thx
01-11-2006, 08:52 AM #6
Don't know anything about this but wishing you the best of luck. I thought I read once that IC tended to attack the new reconstructed bladder - anyone remember reading that?
01-11-2006, 09:08 AM #7
You are not alone!
You came to the right place. Many of us on this board have had this surgery done to the, At the bottom of this page there is a link to my story. It explains what I went through along the way. I will also include some links to some other helpful sites that may offer you some support.
I know this feels so overwheling right now, but it will get better. We are all here to support you long your journey.
For this link you will need to look for where I posted the heading you'll know it's my post because it will appear in purple bold writing:
Here is some help for preparing for bladder removal.
For this link you will need to look for where we posted
Ask your doctor (Bladder Removal) Questions, my post is in purple and blue:
This site gives information on:
*What is urinary reconstruction and diversion?
*Urinary diversion options.
*Ileal Conduit Urinary Diversion (Advantages and Disadvantages)
*Indiana Pouch Reservoir (Advantages and Disadvantages)
*Neobladder to Urethra Diversion (Advantages and Disadvantages)
*A Look at the Three Surgical Procedures
*What can I expect in the immediate post-op period?
*What restrictions will I face regarding work, activities, diet, or travel?
*Urinary Tract Anatomy
Here is the same site as before only this is regarding Stomas and Ileal Conduits.
I thought this guide was appropriate for those of you whom are about to go through any of these operations.
This guide was designed for people whom had cancer, but it is still helpful for us. It even helps people whom have Neobladder to Urethra Diversion. Here is the link: http://blcwebcafe.org/posthospitalsurvivalguide.asp
If I can think of anything else I will let you know. Feel free to browse these topics. Maybe some of this information will help prepare you for surgery.
Last edited by Kara29; 01-11-2006 at 09:18 AM.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)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011
"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/
Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.
01-11-2006, 04:14 PM #8
- Join Date
- Mar 2004
I have had almost all the surgeries they do on bladders. I started off with an augmentation which did not work, then 8 months after that surgery they removed my bladder and urethra and gave me an ileal conduit. I wore an external pouch on my stomach to catch the urine. After 6 years I had it converted to what I now have- an internal urostomy pouch. I love it- I have a very tiny opening on my lower stomach on the right side which I keep covered with tape and gauze. About 4-6 times a day I put a catheter in it and drain the urine. It is as close to being normal as one can be with out a bladder or urethra. I have had it now for 13 years, so all told I have not had my bladder now for 19 years. I live a normal life, actually sleep through the night and can drink as much fluid as I want and not have to worry about needing to pee every 5 minutes! Please ask any questions you may have- Judith
01-11-2006, 06:20 PM #9
- Join Date
- Oct 2003
- Omaha, Nebraska
I had my bladder removed Nov. 1. I have the external bag. My Dr. gave me the choice of the neo-bladder. I had researched it, and did not think it would work for me. I had a lot of uretral pain, so I didn't want to cath my urethra. Is what your Dr. planning on doing called a neo-bladder? I haven't heard of anyone that that procedure worked for. If you have a lot of urethral pain, I wouldn't think it would work. I wanted the internal pouch that Judith has, but my Dr. didn't have enough experience with it. I am happy with my external bag. It is hard to get used to, but I can sleep through the night. I went to a movie last week, and it's the first time I have seen a whole movie in 15 years! Good luck with whatever you decide, it is a tough decision.carly
01-12-2006, 12:56 AM #10
My IC was eating it way through everything if that makes since. I was also self-cathing at the Time also. I always had redsuil Urine in. I kept having Blood also in my Urine. I mean really Bad Blood.
So after 2 tries My DR. said okay that is not working either and then we Had the Ileo-conduit Made.
I would not trade the Bag for Nothing.
But I do give my DR. Credit for trying everything first Before I had My Urostomy.
I hope that this helped.
I am here for you Okay.
You are in My Prayers.
01-12-2006, 02:52 AM #11
All your info is so helful and much appreciated .I am praying that this surgery will work and I can start living my life again. I know my kids will be thrilled to have mom on the mend again.Between my real family and you guys I have the best support a person could have or want.I am scared it wont work but I have heard both sides and I ll try this if it doesnt work then out comes the bladder. But hopefully it wont and I will be a lucky candidate :woohoo: but only time will tell. Thx Every1
01-12-2006, 03:36 AM #12
- Join Date
- Feb 2002
Best of luck to you in Feb. We'll all be sending warm thoughts your way. It sounds like you've tried just about everything and surgery is the next step with a bladder that small. Please keep us posted how the surgery goes. That surgery is something my doctor has proposed as the next step for me when I can no longer deal with the pain. I notice you are from Texas, if you don't mind my asking, where are you having your surgery done? Have you found a doctor you really like? Mary
01-12-2006, 05:24 AM #13
- Join Date
- Mar 2004
Country girl, just wondering if the doctor has any of his patients that he has done this surgery on for IC that you can talk to.Has he discussed his success rates for IC for this? I can certainly understand avoidng having your bladder out as that is what I did, but I am just wondering if your surgeon has had more success than most with this. I hope from the bottom of my heart that this surgery will be tha answer and you do not need mroe surgery. Did he discuss the possibility that you may have to self cath on a regular basis afterwards? Judith
01-12-2006, 05:35 AM #14
Good luck on your surgery on Feburary 9th. I am going in on Monday for my permemnt interstim.
01-12-2006, 06:50 AM #15
Yes my Dr has come highly recommended and he was 1 of the 1st Dr's to do a succeful bladder removal and reconstruction.I have talked a few of his patients and each have had their own success story to tell and I know that bladder reconstruction could be my answer but there is that chance that I will have to have it removed at a later date (maybe) I feel very comfortable w/this Dr he is my 4th opinion and all have said the same thing. But this Dr is confident but lays the facts out on the table of all pro's & con's of it all. I am ready for the surgery but still scared and cry alot but the way I look at it is I have been in pain and misery for 6+ yrs and what could I lose.I have a feeling that this is right timing and Dr. but I appreciate all concerns and opinions keep them coming I need. Thx every1
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