• Posted by starflower31
  • 19 Jun 2010

So here’s my story-I found out I had interstitial cystitis in February of this year. How mine started was from a uti (Urinary Tract Infection). I had symptoms,went to the doctor and they told me I had a uti with the bacteria ecoli. So I took my antibiotics,but my symptoms didn’t go away. I returned to the doctor. They again told me I still had the uti with ecoli bacteria, so they gave me a stronger antibiotic. I got better this time and my symptoms went away, but not for long. Two weeks later I started to get my symptoms back again. I have burning, pressure, and frequent urination. I felt better when I would drink a lot of water, then as my bladder filled up, I would have to pee and start the pain all over again. I went to the doctor again. This time they said I had white blood cells in my urine but no bacteria growth.They then said that I needed to see a urologist. That’s what I did. I went to my urologist a couple of times telling him my symptoms were so bad and that something had to be wrong! He then scheduled me for a cystoscopy.That’s where they go in through your urethra with a scope and look at your bladder. I had that done with anesthesia. When I woke up my doctor told me that he only saw inflammation and that it could just be from my hormones. He sent me home on Macrobid. That only helped for maybe one month,  then again my symptoms came back. I called my Urologist again and told them that I was not getting any better, and I pretty much asked if he could do a cystogram and stretch my bladder and put dmso into it. So he scheduled me for the cystogram, I had that done, and this time when I woke up he had pictures for me to look at. He explained to me that I have a chronic bladder disease and that there is no cure. I felt like i was gonna pass out! He then showed me the bleeding spots on my bladder, and one ulcer. The dmso helped me feel better for about 2 months. I then had to change to a different urologist because my insurance changed. The new Urologist started me on Elmiron. I felt better,but after 3 weeks of taking Elmiron, I started to not be able to swallow very good. I had to stop the Elmiron because it was making the glands in my throat swell up. Next, I started to get dmso treatments once a week for 6 weeks. That was a nightmare! A nurse would just come in and put the straight catheter in and pour the solution in. That hurt bad! I had to hold it in for at least an hour. It was nearly impossible to do because I was burning so bad from where the catheter went in. I would go home and soak in the bath water, drink baking soda water, and keep an ice pack down there all day. Towards night I would start feeling better. The treatments did help me, but I was told they should of numbed the area around my urethra before they started my treatment. Also that they should of used a pediatric catheter .So next I’m to see my Urologist in 4 weeks and probably schedule me for another cystogram to see if my bladder got any better. After that I don’t know what awaits me and it’s scary thinking about it, but I have lots of ic friends to talk to. That helps knowing people who are going through what you are, and that you aren’t alone. So that’s my story.

  • 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!