Thread: What do I do now?
07-20-2008, 10:03 AM #1
- Join Date
- Feb 2006
- St. Paul, Mn in suburb Oakdale
What do I do now?
I was diagnosed in 1995. I went through many of the same trials and tribulations that the other people have written about in their threads. I have had almost all the meds that I can stand. The procedures from hydrodistension to interstim that didn't work either. I am currently not doing anything but voiding frequently, having intermittent unbearable pain, to blood in the urine and taking 15MG of morphine twice a day, fexofenadine, and a generic antidepressant daily. I sometimes have night time incontinance and continue to void every hour during the day and night. This has gotten to be very old. The Uro that I have seen last will only tell me that all he can do at this time for me is to remove my bladder. He did a flex cystoscopy and my bladder is so full of scar tissue that my capacity is 2 to 3 oz.
I was hoping that someone would be able to tell me where to go from here. I want very badly to have a better life style. I don't know if I can change one set of problems with a whole new set of problems. (Like having a cystectomy)
07-20-2008, 10:37 AM #2
Hey Janclala - Sorry you have been through the ringer with this disease. YOu have certainly had a difficult time and I don't blame you for being exhausted and frustrated.
It sounds like you've been through the myriad of treatments and there isn't necessarily a stone unturned and you're at some crucial decison making.
I have read many stories on here of people having their bladders removed and you may want to correspond with them to get their perspective.
I know it's not ideal, but I've read positives from these folks that as a last resort and after exhausting all treatments it did improve the quality of their lives.
I hope you can find some answers that will bring more pleasure to your life.
Good luck and may God Bless you!Symptoms:
Sensory Urgency - having to urinate when I have lower volume in my bladder. Sometimes bladder discomfort. Sometimes Testicle aching. Heavy Anxiety!
Pelvic Floor Dysfunction. Dr's don't think I have IC but the more I read the more I think this is all related. I also have a severe hormone imbalance - extremely low Testosterone.
Zoloft 100 mg, Valium 5mg (use sparingly)
What might help me:
Still trying to figure this out.
07-20-2008, 01:55 PM #3
- Join Date
- Jul 2001
I'm not sure how well you like your current uro, but what about another opinion? Or third or fourth?
Having your bladder removed is major. (As if you didn't already know that..) It does sound like he has tried many things that some IC'ers respond to whether it be a little or alot.
I'm so sorry you aren't getting any relief.....I remember those days of peeing every hour and the constant fatigue of it all.
I wish there was a cure-all I could give you..........hugs will have to do...(())
Hang in there and keep researching everything.......
Try and pm Kara or Judith, any of the gals who have already had bladder removal. They have a wealth of information from their individual experiences.
Take care and keep updating us.......Tons of support,
IC angel helping families in need for the holidays. firstname.lastname@example.org
07-20-2008, 02:10 PM #4
I will move this thread to the bladder removal board, where you should hear from some who have had the surgery.
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
07-21-2008, 04:32 PM #5
- Join Date
- Jul 2005
I too went thru all of my options and finally had my bladder removed last year. I can tell you that while the recover and surgery are rough I have not for one second regretted my decsion to have the operation. Like any surgery there are pros and cons but I would maybe also talk to Judith56. she too had her bladder removed and has had sucess. You might try surfing some of the other web boards that deal specifically with people who have had thier bladder removed and ask them questions you have. One I know of is the UOAA. This is a site specifically for people who have had their bladders or bowels removed. I wish you good luck!
07-22-2008, 05:16 PM #6
- Join Date
- Mar 2004
Your bladder sounds like how mine was when I had my bladder removed over 22 years ago. It is an extremely hard decision to make, but I really had no other options left. I had two little boys-they had just turned 5 and 3 and I decided if I wanted to be healthy and do things with them then I had to try the surgery. It was one of the best decisions I ever made and like Eva said, it is not an easy surgery, but once you are healed it is well worth it. I am able to do just about anything I want, I can drink as much fluid as I want and not have to worry about where the bathroom is- I can have a life. The first time I ever slept through the night was when I was 30 years old, right after I had the surgery. It was amazing to be able to do that. Let me know if I can answer any questions you may have.
07-28-2008, 11:03 PM #7
- Join Date
- Jun 2008
Praying for you. Talk it out and read up on it. I would want it if it actually helped and could still do what I usually do. I don't have to go to that resort right now though.
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