• Posted by Cathy
  • 29 May 2009

I’m very angry, and upset, and just disappointed yet again. The super high power instillation I had been doing has stopped working! After I do them, it takes about 3-5 days to get all the fluids out, and I experience really high pain levels the following few days after the instillation. I was hoping this was something that would help me, but silly me I should have known. Everything that works, only works for awhile. I’m mad, and just don’t know what to do anymore. I need something to work because I can’t keep living my life in bed with a heating pad on. That’s the extent of what my life is right now. I feel like I’ve been robbed. People my age are working, having a family, and going out and enjoying themselves. But here I am in pain and not able to do anything. I’m hoping I’m just going through a flare stage, it’s been going on for 3 weeks. I see the pain doctor on Monday, and I’m hoping he has some new light to shed on this, because something really needs to be done! I just don’t know what to do anymore. My only other option for surgeries is to get the Indiana pouch and get rid of the bag. I’m going to ask for a second opinion on the pain pump and see what happens. I need something to be done, I just….don’t know anymore. Hopefully one of these doctor’s that have such brilliant minds can come up with something. I love my doctors, they’ve helped me through a lot but it’s time to take some drastic action, and come up with some answers so I can enjoy my life, like I’m supposed to.

  • Posted by Cathy
  • 12 May 2009

ok it’s been awhile since I’ve written so I’m going to do and update. I have sleeping pills now, so I’m sleeping a lot better! Last week I ran out of my lidoderm patches, I had called the nurse practitioner the week before, the pharmacy was waiting for pre-approval from the insurance company, so….I slept horribly last week and didn’t get any relief until I got the lidoderm patches back. Now I’m sleeping much better. I didn’t do an instillation last week, because I would have had to everything refilled and would have been late this week. Don’t ask me about my reasoning on that, but I didn’t do it. So when I did it yesterday, it was ok, it didn’t work as well as it had been working. I was hurting quite a bit this morning. I took a nap in the afternoon, but I was feeling better. I went to Hamlin Beach with my Dad tonight, and we went on one of the trails, I started hurting because of all the walking, we’ll see what tomorrow brings, as to how I’m feeling after the walking!!! I have been seeing the pain doctor once a month. We’re talking about getting a second opinion for the pain pump. My insurance won’t cover the acupuncture, so that’s out of the question! But he did talk to me about distraction therapy. It would keep my mind off of the pain. So I’ve made a chart where I can keep track of things I do and have written on that chart things I want to make sure I’m doing all of it, it’s helping some, I still feel the pain but I’m not dwelling on it. I’m going to talk to my urologist and see if I can get the pouch on the inside of me and the stoma that I catheterize so I can get rid of this bag. I want it done in either August or September of this year or January of next year. So, I’ll update again soon. Sorry I’ve been lacking in keeping this updated, but I’m going to be working harder on this so I will get all the pages done, and then go to just writing a new post everyday!