Looking for advice

[Akod]

Hi I was diagnosed with IC in 2010, having had symptoms for many years before. I have been through all treatments available with no relief. Capacity is minimal(40ml) with recurrent Hunner ulcers, my Doctor now suggests Bladder augmentation.
Love to hear from someone who has been through this! Worried that some symptoms will remain afterward so.

[ICNDonna]

Re: Looking for advice

I wish I could help. One thing you might want to do is to look at the AUA Guidelines For Treatment at the link in my signature below --- just to be certain there aren't some treatment options you haven't tried.


Donna

[Akod]

Re: Looking for advice

Thanks Donna, I looked at the guidelines and can check off almost all on the list bar Botox.
My Doctor is concerned about the pressure being put on the kidneys- already some scarring there....
as it's such a major step I would love to hear from any 'brave soul' who has gone through this to find out how their journey went!

[Akod]

Re: Looking for advice

Found thread from Judith56(1915) and read topics she suggested- very useful info. Thanks Judith56 -hope all went well for Bladderella !

[ABliske]

Re: Looking for advice

I came across a very good, informative (hour long) discussion on BCAN bladder cancer advocacy network which discussed 3 types of bladder removal from 3 people who had, had the surgeries. It was a year or more ago. Let me know if you want help finding the info. I do not know if I can post a link.
How are you feeling about a life-changing surgery? Hopefully, it would be in a very positive direction!!!

[Akod]

Re: Looking for advice

Will check out this discussion thank you Abliske.
As I have recently retired (after 47 years) I was looking forward to a stress-free time so I am both sad and apprehensive with lots of questions rolling round my head right now! !

[ABliske]

Re: Looking for advice

It is still on there. It is a webinar called what do you wish you had known before bladder removal surgery.

Will check out this discussion thank you Abliske.
As I have recently retired (after 47 years) I was looking forward to a stress-free time so I am both sad and apprehensive with lots of questions rolling round my head right now! !

[ABliske]

Re: Looking for advice

It is a huge decision for anybody! I wish you all the best either way!

[Missv13]

Re: Looking for advice

Wishing you the best of lucks! I too was diagnosed with IC in 2010, had a few okay years and now I'm going through hell.

[Judith56]

Re: Looking for advice

Just saw this, don't know if you read the thread I wrote awhile back, but I can tell from my own experience it did not work for me. I also had small capacity, mine was about 30 cc's, so I had basically stopped drinking fluids because I knew it would just make me go more. I was also incontinent and not even aware that I was wetting myself until I would feel my underwear damp. so this was over 30 years ago and treatment options were very minimal. Elmiron and most of the meds now available did not yet exist, there was no IC diet, they did not believe in using pain medication for IC and some urologists did not even believe the disease existed. So when I was given this option, I tried it. Big mistake for me. The IC spread to entire newly augmented section which put me in permanent retention. the only way I could urinate was by cathing. My best advice would be to get names from your surgeon that plans on doing the surgery of patients he/she has done it on for IC. this way you can talk to others and see if the operation was a success for them. if they say they cant or will not then that should be a red flag. I would also look up online, the success rate long term, for this surgery for IC patients. To the best of my knowledge this surgery has fallen out of favor over the last several years due to not a high rate of success, but that is my experience. It may be different for others in other parts of the country. Good luck!

[Renac]

Re: Looking for advice

Could really use some advice/ support! I was diagnosed in 2000 with IC, I now have severe IC. Honestly I can't think if a treatment I have not tried....I had 2 interstim, tried every medicine out there, tried installations, last Wed I had my 28th yes you read that right 28th cysto, stretching. This surgery was very unsuccessful and I'm in SEVERE pain...My bladder capacity now us 19cc....which is NOTHING! I honestly have no life anymore, I just survive! I have an appointment tomorrow in Birmingham Alabama to talk removal of my bladder. Im so nervous and stressed to the max! ANYTHING that ANYONE could tell me would be greatly appreciated....I was told my bladder had shriveled to less than 1/4 Of normal size! The last interstim implant was last September and I contracted MRSA, so it was removed and I went through 6 weeks of vancomycin IV treatments....still tested positive, literally have been on Bactrim and bactraban for 1 solid year...no exaggeration!! Last week before surgery because of the site leakage I was retested and YES still MRSA POSITIVE, one year later! I guess you could say I'm a little scared and could really use any advice! If you prefer to reply privately my email is [email protected]. Thank you in advance and prayers for my appointment on Tuesday 8-30 @ 2:30...not sure what I feel is the right answer but I am to the end of the rope and barely hanging on!!!

[ICNDonna]

Re: Looking for advice

to the IC Network.

I'm so sorry you are in such a difficult place. I know there are some instances where cystectomy is the only option remaining. Please be sure to let us know what you learn at your appointment.


Donna