• Posted by Cathy
  • 14 Jan 2009

So I saw the nurse practitioner on Monday. I told her how frustrated I was and how I couldn’t sleep, and the pain was there all the time. She increased my nortriptyline to see if that would help me sleep, and she is going to send me to the Palliative Clinic at the Cancer Center in Strong. They help deal with people who have pain in the end stages of their lives and people who have severe pain. I’m hoping they will be able to help me. They wanted me to go back to the pain center, but I have been there before, and wasn’t impressed. I had a nerve block and a radio frequency ablation and both helped for only a little while. but then the pain came back. I was not impressed with the doctor’s either. However the doctor’s that helped me while I was in the hospital after my last surgery were from the pain clinic and I liked them  a lot. I will see what happens at this clinic and then go from there.

  • Posted by Cathy
  • 11 Jan 2009

I have a doctor’s appointment tomorrow. I’m going to talk to them about some of these meds.  My current meds (if I haven’t listed them before) are:

Methadone-5mgs -2 2x’s daily 4 at hs (hour sleep)-taken for pain    Oxcarbazepine -300mgs-1 3x’s daily -anti-seizure for IC cocktail   Cimetidine-300mgs-1 at hs -h2 receptor (tagamet)- for IC   Nortriptyline- 25mg -2 at hs- anti-depressant for IC cocktail Prazosin– 1mg-1 at hs-alpha block for IC  Carisoprodol (soma)- 350mg-1 3x’s daily-taken for pain  Hydrocodone-7.5/500mg-2 every 6 hrs.-taken for pain

So except for the soma all are pretty old med’s I’ve been on for a LONG time.

But I need to get something different. I’m having problems with sleeping now. I wake up every hour or 2 in pain and need to move. Unfortunately because of the bag I can only sleep on my back or my side. I’m a stomach sleeper. I would LOVE to sleep on my stomach again and get a good nights sleep!      So I’m going to talk about pills for relief and something to sleep! I’d do anything for a good nights sleep right now. Thank God for old reruns on TV, at least there’s always something good on!

  • Posted by Cathy
  • 08 Jan 2009

I found out that I’m not bleeding from my bladder but I’m having break through bleeding. I think I’ve posted about me having endometriosis. If I haven’t,then I’ll tell you  I have endometriosis.  I was put into menopause 2 and a half years ago so it wouldn’t come back and I could get my IC taken care of. So I was on a shot (Lupron) and had all the great menopause symptoms! I came off of it and am on my second hormone (Megace-normally used to treat anorexia), because the first was causing too much break through bleeding. So I’m thinking all the pain lately has been from that.  SO the doctor wants me to double up on my hormones for 3-5 days, until it stops. If it hasn’t stopped by Monday I have to call them back.

In my search for new and interesting IC topics I’ve found 3 pretty neat web sites. The first is cystitisrelief.com. It is a whole bunch of people who have IC, and discuss different things that help them, or newly diagnosed people who need help!  Next is healthboards.com. Pretty much the same as above, but you have to join to post.

Last site deserves it’s own paragraph. It’s called clinicaltrials.gov. You can search the site to see what kind of trials are going on. The site will tell you if they are reqruiting and if it is finished. So maybe people can find trials they can sign up for. The site shows how to contact someone about it, and where the sites are located that the trial will take place. Another site I found was centerwatch.com. It is another site to find clinical trials on. It also has medicine information, and health and educational resources. Lots of good stuff on this site.

  • Posted by Cathy
  • 05 Jan 2009

I know it’s been awhile since I’ve been on here and update things. And I apologize to people reading this. Holidays have been crazy!

My doctor wants me to start bladder instillations again. So I did. The first time I did, it hurt my urethra and bladder so bad, I couldn’t stand it. I used to be able to hold the lidocaine in for about 2 hours. I lasted 10 minutes this time. It took me 3 days to recover from it. So I’ve been trying every 3 days to do a catheter treatment. I’m starting to get dried blood coming from my bladder. When I had the nephrostomy bags, I had blood in my urine, and the doctor said it was normal, because a IC bladder does bleed. I hadn’t noticed it before because there was a lot of urine compared to very little blood. When I got the bags, it went to very little urine, and noticeable blood. So it’s making me nervous that I’m getting dried blood.I know it’s normal for an IC bladder but it’s always a little bit scary. It started like the second time I did a bladder instillation.

I’m kind of confused as to why the doctor wants me to do bladder instillations. I have the urostomy bag so there is nothing going into my bladder, and he says he thinks that the pain is coming from the outside of my bladder. So….I’ll have to talk to them when I go in next Monday.

I’ve been having some problems with my wafer and bag. I’ve had a couple of leaks lately and my skin is becoming very dry again. I ordered a new lotion from Edgepark. It’s fast drying but it makes things slippery too. I hate having leaks. They always happen to me in the middle of the night, it’s really irritating to wake up in the middle of the night and be wet. I’m not having soaking wet leaks, but just enough be know I’ve had leaks.

So now that the holidays are over I’m going to go back to daily posting, and a lot of research for updating the website.