• 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
  • 05 Jun 2010

I finally have my neobladder!!!!!  If you don’t know what a neobladder is, it’s a continent urinary diversion, meaning you are able to empty your urine at your discretion and do not need any appliance or collection device, however, you do need to use a catheter to empty the new bladder. I do have my original bladder, and a new bladder. There isn’t enough evidence supporting whether or not removing the bladder helps at all pain wise for IC patients so we left the bladder in.

I have another bladder now to the lower left hand side of my belly button. My new stoma is in my belly button. I have a 7 inch incision to the left of my belly button and a 3 inch incision where my old stoma used to be.  I had a tube in my belly button draining my urine, and also a super pubic catheter also draining my urine.

neobladder surgery

So this is what everything looked like. The super pubic looks kind of gross. I have a tagaderm patch over the tube to hold it in place. My stitches had come out of the skin and I had problems with the tube starting to come out. So the tagaderm was put on so that we could keep it into place. However, my skin started breaking down from tape and the tube being in the same place for so long, so we put some gauze underneath the tubing so my skin could have a break and heal. We used a lot of triple anti biotic cream to help everything heal. I am also using Vitamin E lotion to help get rid of the marks from the flange of the urostomy bag. I am also using it on my scars to help them fade and won’t look so bad. Vitamin E is wonderful to help fade scars. I just found out about the lotion and it works wonderful!

So this is what my stomach looked like after surgery. I am going to take some pictures of my stoma now, so that it will be more visible, I will also add pictures and describe how to irrigate the neobladder tubes. There is a lot of mucus that builds up, I have described the mucus with the urostomy bag. Well the neobladder is made of intestine, as is the stoma and the chimney to connect the neobladder to the stoma. So there is a lot of intestine and the intestine naturally produces mucus, so you have a few problems with that. So I will write another post about that, and I will probably make a whole page dedicated to neobladders and the things that you need to know about the surgery and everything else!

So I’m still around a level 5 pain on and off. I did get an infection in my super pubic tube, well around it. I had some pain after the tube was removed, which wasn’t very encouraging. But it’s been almost 7 weeks since the surgery and I’m doing quite well. I am emptying my neobladder every 3 and a half hours, including at night, which is exhausting. But I’m slowly stretching it and am doing very well with the catheter. But all in all the surgery went well, and I think the results are very good. I’m happy with everything that’s been done, and also I’ve lost 20 pounds and I’m extremely happy that I don’t have to wear baggy long shirts anymore to cover my bag. I still find myself tugging on my shirt once in awhile out of habit to make sure my bag is covered but I always end up smiling knowing the bag is gone!