• Posted by Cathy
  • 16 Aug 2010

Scars, scars, and even more scars. Some scars tell me where I’ve been. Those scars are painful yet they are also a comfort to me as well. I’ve known what happened with those scars, and the pain I endured while those scars were fresh. Those scars tell my story up to this point; they say where I’ve been and what my life and IC was like then. Now I have new and fresh scars. Scars from my neobladder, BIG scars, the biggest scars I’ve ever had. I have one that is 7 inches long, which creates a new me, and the other is 3 inches long, and that is there to cover up what had been and where I have been for the past 2 years.

These are the scary scars. The ones that come with doubt, fear and uncertainty. Will I stay at a low pain level? Or will my IC shadow come back with a vengeance? Was this surgery a mistake, and will it make things worse then what they were before? There is the possibility that I will get worse. But so far I’m feeling good my, my quality of life has already improved tremendously so that is telling me I didn’t make a mistake in deciding to have this surgery

So where will these scars of uncertainty bring me? There are only 2 ways it could go, good or bad. So we’ll see how it goes from here.

Written 1 month after neobladder surgery

 
  • Posted by Cathy
  • 04 Aug 2010

On Monday the 9th I’m going to have another cystoscopy. I’ve been in a flare for 2 weeks now. Some days really bad some days not so bad. But it is definitely IC pain that I’m having. So my doctor would like to do another cystoscopy look in my bladder, take some pictures, see if it’s shrunk some, and he is also going to put some silver nitrate in to help treat the pain and spasms. I have read just what wikipedia said about silver nitrate said about it, and it didn’t give me much about treatment. I have been having some urethra spasms as well. I HATE urethra spasms they make me feel like I have to pee so bad! I know it’s not true because I don’t use my bladder. The doctor did give me some Gelnique Gel (oxybutynin chloride) and it helps instantly! I need prior approval for medicaid so I’m waiting on that. I also have switched counties, so I’m having difficulties with switching everything, and it’s soooo different then the last county (a lot bigger) I’m having problems with return phone calls. Tomorrow is going to be spent calling my social worker every 15-30 minutes.

So back to the cystoscopy. I totally trust my doctor and will do whatever he wants to do. He’s been going on this journey with me for 3 years now and I totally trust his expertise. So I will give you all the results of what happens after the procedure. I’m a little frustrated as well. I’m hoping I’m not backsliding. I’ve been feeling so good for so long and like always 2-3 months after a surgery I start getting pain again. But I’m going to look at this as we’re catching this early and this will help, then we’ll be all set. So I’m hoping this silver nitrate will work!