Life-Changing Bladder Removal: My Journey with Interstitial Cystitis

So I had my bladder removed in January of 2015. After all the researching and thinking, it was the best decision I could've made for myself. It definitely wasn't an easy road and there were complications, but this surgery saved my life. Interstitial Cystitis is a horrible, painful, and embarrassing disease. I would have to urinate hundreds of times during the day and night. When I would urinate, it would feel like razor blades had cut everywhere inside and out, and acid was in the urine. Then my bladder never gave me any notice that I needed to get to a restroom. When I had to go, urine just started to come out. I had absolutely no control. So there were so many embarrassing public accidents. What was worse were the many people pointing and laughing at this grown woman peeing her pants. So I finally said enough was enough and had the surgery. Surgery wasn't scary for me because I did so much research. I was prepared for every outcome that could happen. Immediately after surgery, I felt that burning in my bladder was gone. It was amazing to wake up to that pain gone that I had felt for most of my life. I was in the hospital for six days and was released. I did amazingly, my doctor said. Once I was at home, I started to get some pain in my stomach that the pain meds couldn't touch. So we went to the ER and found that there was an abscess in my pelvis where they couldn't drain. So I had to get a PICC line put in and give myself IV antibiotics for a month. While I was recovering, my surgeon called me personally. During surgery, she had removed my appendix because it looked funny. So she called to let me know that my appendix had cancer in it. She didn't want me to freak out when I looked at my reports. So she called to explain everything to me that it was a visit in time. The cancer was contained in the appendix and I didn't need any further treatments. At that point, I knew I made the right decision to have my bladder removed and the right surgeon. A year after my surgery, my Interstitial Cystitis came back, but I knew that was a possibility, as my surgeon had warned me, but I'm just thankful I don't have to urinate hundreds of times a day/night. So I love my bag and have no shame in it because it saved my life in more ways than one. So I say embrace your bag and stoma. Get some Sharpies and color them if you have to, but remember they saved your life. So love them and love life and laugh a lot.

Great post and wonderful attitude. It's been decades since my surgery, things just get easier with time and experience. :)

Keep writing, we all need your young wisdom and experience, especially we old 'em who spend too much time feeling sorry for ourselves. Cheers, dls

Forgot to add what an incredible, strong person you are... then I read you have three children... Lucky... I only got one. The horror, terror, and insane thoughts that go through your mind are not to be explained. You're fantastic, and your children will grow up to handle anything, I mean anything life throws at them... they have you... Lucky... Lucky... Lucky. Keep posting.

Thank you so much for your kind words. It really means a lot to me, especially putting myself out there. ????

Words of Encouragement from Ostomy Advocates I Hollister

You're here, home among friends...unless the "administrators" decide your comments unworthy. Beware, but be honest. We're on your side....a lovely side it is, too, so healed and complete. Gee.

Pebbles2121, thanks for sharing. In this society, people are so doggone cruel. I think you're a courageous person with a great attitude considering all that you have gone through. Don't let the dislikes discourage you!
Even an author whose novel made the list of best sellers didn't get picked by all of society!
However, they made the list!
Thanks again for sharing...

Respectfully,
Angelicamarie

Thank you dls and Angelicamarie. I've always been that quiet girl my whole life who let people push me around and never stood up for myself. This disease has taught me to fight for myself and others as well for what's right. It's also taught me to be more of an open book so that people know more about ostomies. That way we're not looked upon as nasty or disgusting for having a bag. Bags nowadays can be hidden and no one can even tell I'm wearing one unless I've told them or happen to spring a leak. ????

Oh, we forgot to mention you're gorgeous. Oh, how the supplies have changed, bug everyone for 'new' samples; all the companies are always coming up with something new. It's great, and most insurance will cover it. Freebies are, well, free. Keep up with all the latest; I'm new and change things around all the time. Things are great when there is competition with so many people with so many different needs and lifestyles. Go shopping...

Hello pebble. Thank you so much for sharing your experiences and I echo what has been said by other respondents. You have described your situation so well and so positively that it gives us all pause for thought about how fortunate most of us are to have had the opportunity to move away from the life that preceded the stoma, towards a more manageable existence.
I do hope you continue to post as I really enjoyed the read!
Best wishes
Bill

Pebbles,
You certainly have been through a lot, but it is nice that your attitude is so great! I cannot begin to imagine the embarrassment you suffered through. The timing was perfect for you and your appendix!
Prayers for continued recovery and good health.
Puppyluv

Hi Pebbles, thank you so much for sharing. I've had my urostomy for 5 years due to bladder cancer and it is still hard for me to accept. You have a great attitude and are so positive about it. If you have any tips on dealing with it emotionally, please let me know.
Bobby