• Posted by Cathy
  • 12 Oct 2013

I’ve been having extremely painful urethra pains. I wake up in the middle of the night thinking I’m going to pee right there on the spot! And it hurts so much. The 1st night it happened I was at my bedroom door hand on the knob ready to open it when I woke up enough to say hey I don’t pee like that!!!! I went back to bed, tossed and turned, finally got back to sleep before I woke up again. This continued for 3 straight nights before I finally called the uro and he sent the paperwork in for my nerve block. He also put me back on the diazepam. I had taken myself off of it the last time I was in Texas. I’ve been off of the diazepam for 5 months. I’ve also been taking less of methadone and oxcarbazepine. But that I’ll let you know about a little later.

The idea behind the nerve block and diazepam is to help my pelvic floor muscles relax and help the urethra relax some also. I got my nerve block in September shortly after my appt with the uro. For some reason my pelvic area just reacted bad and I had such horrible pains. Sometimes I’ll get some pain after the blocks, however nothing like this. I was 3 months overdue. I’m allowed to get nerve blocks every 3 months. I had a busy summer, helped out my college roommate when she had shoulder surgery, and went to see my friend in Texas in April. Also, some dog and house sitting in between and made for a busy summer. Ok let me get back on track. I stayed after the nerve block for quite awhile while I was waiting for the pain to stop, I was really worried I would have to stay overnight in the hospital. I started feeling a little better and got a shot of toradol and took off for home. By the next day I was recovering nicely. I felt ok for a few days and the urethra pain started up again. I used lidocaine cream and put it on my urethra so it would help and let me tell you it works wonders!!!! I am going back to the doctor’s Thursday and hopefully can get some lidocaine shots in my urethra. It hurts but it feels better in the end!

I decided to join weight watchers in January of this year with my mom. Thank God for her she is so much help with encouraging me and helping me. I have lost 38 pounds!!! It was 45 but when I had my flare up I gained 7 back. So I am back on track and going stronger then ever. One thing we decided in our last meeting, well that we all promised was to get up every hour and be active for 5 min for the whole day. I normally walk once a day whenever I can but lately it hasn’t been working out. I’m getting back in the habit of walking more. Thursday I had 11 exercise points!!! Trust me when I say that is a lot!!!! Since then I’ve got 3 for the last 2 days. I’m working slowly but surely. I’ve had some bladder pain today off and on. It’s been happening when I’m walking every hour. I’m kinda worried because I want to keep up the 5 minutes of exercise every hour, but…..I’m just going to do the recommended 5 min instead of how I am doing 10 instead. Good news about losing weight is that I can take less medicine and am more alert!! I am no longer a zombie that sleeps and so zombie like I practically drool. I can actually remember things, well a little better, and can stay awake longer! My days are a lot better. :-)  However I am having some insomnia issues, I have sleeping pills but I don’t believe they’re working anymore. I tried the other day to just put my book away, turn my light off and close my eyes and I’d just fall asleep! That started at 12:30 the last time I looked at the clock it was 3:30! That didn’t work out so well. Thursday night I FINALLY got a good nights of sleep and it was wonderful!! Since then not so much. But I’ll figure something out. If anyone has any suggestions let me know.

I have set up Twitter for the site, got a new gmail account and also started a Facebook page!!! I have a few more ideas but if anyone else has any ideas let me know. Thank you everyone for all of the support!!!! I really appreciate it!!!!! Thanks everyone!!!!!!!

 
  • 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
  • 04 Aug 2010

On Monday the 9th I’m going to have another cystoscopy. I’ve been in a flare for 2 weeks now. Some days really bad some days not so bad. But it is definitely IC pain that I’m having. So my doctor would like to do another cystoscopy look in my bladder, take some pictures, see if it’s shrunk some, and he is also going to put some silver nitrate in to help treat the pain and spasms. I have read just what wikipedia said about silver nitrate said about it, and it didn’t give me much about treatment. I have been having some urethra spasms as well. I HATE urethra spasms they make me feel like I have to pee so bad! I know it’s not true because I don’t use my bladder. The doctor did give me some Gelnique Gel (oxybutynin chloride) and it helps instantly! I need prior approval for medicaid so I’m waiting on that. I also have switched counties, so I’m having difficulties with switching everything, and it’s soooo different then the last county (a lot bigger) I’m having problems with return phone calls. Tomorrow is going to be spent calling my social worker every 15-30 minutes.

So back to the cystoscopy. I totally trust my doctor and will do whatever he wants to do. He’s been going on this journey with me for 3 years now and I totally trust his expertise. So I will give you all the results of what happens after the procedure. I’m a little frustrated as well. I’m hoping I’m not backsliding. I’ve been feeling so good for so long and like always 2-3 months after a surgery I start getting pain again. But I’m going to look at this as we’re catching this early and this will help, then we’ll be all set. So I’m hoping this silver nitrate will work!

 
  • Posted by Cathy
  • 07 Jul 2010

I’m having one of those days today where I feel cheated. I feel like my life has been robbed by this IC. And I’m feeling like why me? I had plans, I had ambitions, and IC has taken them all and made them into nothing. It’s true I’ve made new plans and have new ambitions but sometimes it’s so hard to let go of the old ones. The IC couldn’t have hit me at a worst time in my life. I had my life with my friends, I was living in a good place, I had a good roommate, I had the perfect job. My dream job, I had finally got the job I wanted so much. Then my IC got so bad and I had to go on disability. I’m now on permanent disability, living with my parents because I can’t totally take care of an apartment or household or myself for that matter right now. It just kills me that this has happened to me. I hate it that this has happened to me. IC takes your life away and ruins any plans you ever had. I had planned on getting married and having kids by this time in my life. Right now, the way my body is I know I couldn’t carry a child right now. All I’ve ever wanted to be is a teacher, a mother, and a wife. All three of those things have been taken from me by IC. IC is a wicked evil disease that just takes from you emotionally, physically and destroys you from the inside out. I mean we can be strong as strong as we can be. Strong for our IC sisters and brothers, strong for our family and friends. Sometimes we need a strong shoulder to cry on, and an ear to listen. I have that in my family, friends and IC sisters, and this website, I’m fortunate. But sometimes there are things that are so hard to try and explain the way you feel, you just can’t explain it to people in a way that would make sense to them. I’ve probably repeated myself a ton of times in this post, but I hope you get what I’m feeling and just know, when someone you know isn’t acting totally right, like themselves, they might just need time to themselves to mull things over or they might need someone to listen.

I want to share with you a poem that came on a card my very best friend from college gave me. She’s such a good friend she missed work for 2 days and came to see me when I was having my surgery. She’s also told me that she tries to imagine the pain I go through, so she can understand what I’m going through better. She’s my very best friend and a sister to me, she’ll always be my sister, no matter where our lives take us. She gave me this card after I was home from my surgery. When I read this card I cried, and when I have days like this I read this card to remind me just how strong I am, and it explains things in such a good way that it will help all of you when you’re having a why me, I feel cheated day.

“The Oak Tree”

A mighty wind blew night and day.

It stole the oak tree’s leaves away,

Then snapped its boughs and pulled its bark

Until the oak was tired and stark.

But still the oak tree held its ground

While other trees fell all around.

The weary wind gave up and spoke,

“How can you still be standing, Oak?”

The oak trees said, “I know that you

Can break each branch of mine in two,

Carry every leaf away,

Shake my limbs, and make me sway.

But I have roots stretched in the earth,

Growing stronger since my birth.

You’ll never touch them, for you see,

They are the deepest part of me.

Until today, I wasn’t sure

Of just how much I could endure.

But now I’ve found, and thanks to you,

I’m stronger then I ever knew.”

Author not named

This poem helps me so much during my bad days. I hope that this poem will help you as well.

 
  • 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!

 
  • Posted by Cathy
  • 15 Feb 2010

Well, I feel like a million dollars today! I’m a pain level of 3 out of 10! Which is amazing! I am so happy about that! I went to see my pain doctor today. I talked to him about the lack of pain I’ve been in since November, and about the neobladder surgery I’m hoping for. I told him I see my urologist next week and will be talking to him about when the surgery will be scheduled for. My pain doctor told me that this surgery will be a good thing for me. He thinks I’m ready for this, and since I’m in minimal amount of pain now that I should be getting the surgery soon. He wants to make sure that the palliative pain clinic is involved with my post-op care so that I’m as comfortable as possible. It’s going to be a really hard recovery for me so, the more help I can get the better! So today was very encouraging. I’m glad at the results of today. I’m going to be seeing my urologist on the 24th so we’ll find out when exactly the surgery will be planned for then. I’m hoping for soon, and I would just like to get rid of my urostomy bag. I’m not saying it’s a bad thing, my bag has helped me, and now I’m ready for the next step. So bring on surgery number 14 and lets get it done and over with. Hopefully this will be my final surgery.

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  • Posted by Cathy
  • 15 Dec 2009

10 more days until Christmas!!! Well, this is normally the most stressful time of year with making sure trees are decorated, cookies are made and gifts are bought and wrapped! So this is a very very hard time of the year with people with IC. Stress gives us more pain. So we really need to make sure that we keep our stress level down. There are some great relaxation CD’s on the Interstitial Cystitis Network website. There are ones specifically for IC. I have one, and it is a God send! I use it at night to relax me enough to go to sleep, but after you’ve listened to it enough you can use the breathing techniques in order to calm yourself down and get your pain levels down. So the other thing we have to watch out for is the holiday food!!! We all LOVE to have all the good food we only get about once a year. We all love it, and it’s so good, but there are some foods that we just can’t have because of our IC. It will give us a HUGE flare up, and I know I’ve spent the past 5 Christmas’s in extreme pain. So I’m trying to think of everything that could help us all have a good holiday. One medication that I found to be WONDERFUL is Prelief. I take it before a meal and it works wonders. I’m not saying take it and you can eat anything! But it does help with the acidic foods. It is meant to take the acid out of foods. I would tread lightly. It does help, but I wouldn’t go and eat everything acidic in the world. If there are some foods that you really enjoy eating at the holidays and you know it’s going to make your pain level go through the roof, use the Prelief. I would try it before the holidays just in case. Try it with some spaghetti sauce, or something that really bothers you and see what it does for you. You just take it right before you eat and it helps a lot! You can buy it over the counter. There are some pharmacies that don’t carry it. So check your pharmacies now and see who carries it. I checked Rite Aid and they were one of the pharmacies that did carry it. If they don’t have it they can order you some and you’ll get it within a week, normally within 2-3 days. So try the Prelief see what it does for you and hopefully you can eat some of the wonderful Christmas foods that you’ve enjoyed so much, but make your holiday horrible. So everyone enjoy I hope that some of the things here will be able to help you enjoy your holiday!

 
  • Posted by Cathy
  • 30 Nov 2009

Ok I’m very sorry that it’s been so long since I’ve added any updates. Sept, Oct, and November have been very hard months for me. The very beginning of September, I was taken off of my hormones. There was an issue in my very last cystoscopy with the lining of my vaginal wall, they found that it was very thin. So I went to see my gynecologist a couple of weeks later and he told me that the vaginal wall lining looked perfect. BUT, he did say that was a characteristic of IC to have the vaginal wall lining thin and then plump back up. So….he then told me my worst fear…I was supposed to come off the hormones. If I got a period and the pain got to bad then start the hormones again, that day and continue taking them. He didn’t want to start giving me estrogen pills he would prefer if my body would produce it itself. So that was September 2nd. About a week later I started feeling lethargic and I got really depressed through the 3 months. Well, after my birthday on the 7th of October, I got this horrible feeling. It felt like I was going to have my period. Now I had been expecting it for the whole time, and I had been hurting for about a week after I stopped taking the hormones. So the increased pain lasted for about a week. This had brought my pain level from about a 7 out of 10 to a 9 out of 10 that week. After that week I went back to a 7 or 8 out of 10. I started feeling ok. I had another uro appt. and he wanted to get my battery (interstim) fixed (adjust the leads with a programmer thing and then see what happened after that. I had missed my appointment with my pain doctor due to this. So about the 2nd week of November it hit me from out of nowhere. I was feeling pretty lousy anyway that day, then the pain increased throughout the day, I got up to a level 10. I was to the point where I had been outside, and I came back in and I couldn’t make it to the living room so I laid on the floor. I kept thinking great here we go again. My dad and step mom came and got me up and pretty much carried me into the living room. I laid down tried listening to my relaxation cd in the dark to calm down. I had had some pretty sharp pains earlier in the day and had some success with doing the breathing exercises I had learned in the CD (great thing to have I got it on the IC Network web page). So this time it didn’t work. I figured I was going to the ER, which I hate doing. I called my uro and he told me to take extra oxycodone when I needed it. Well, I take 15 mg every 2 hours and by the time I was relaxed enough to go to bed I was up to 75 mg. This had started (intense not giving up pain) around 6pm. So I went and got to bed, woke up quite a few times. I called the gyno in the morning, it was a day he wasn’t in. I knew I was going to get my period. It was one of those feelings you have (the girls reading this will know). So I went and I waited for the next day. I had still been taking quite a bit of oxycodone but was able to slow up a little bit. The next day I called in the morning, and then again in the afternoon. The nurse finally got a hold of me in the afternoon saying that I could go back on the hormones. So I did. It took me about a week and a half to recover from all of this. So I still had my battery appointment. After this pain and before the next appointment I started feeling a lot better. Got to a pain level of about 5, which is so great for me. So I went and got the leads adjusted with my battery on Tuesday (this past Tuesday the 24th). So I had been doing pretty good. We reset 2 programs that had not been working for me so I had 2 new ones to try out. So we had left the one on when I left the uro’s office that day, I woke up the next day in horrible pain. I had gone right back up to a level 8 or 9 pain. It got up to a 9 by the end of the day. I turned it off that evening. I was feeling better on Thanksgiving morning when I woke up. I was so excited, it’s been 4 years since I’ve had a great holiday with no pain, or anything sticking out of my back from surgeries. I was looking forward to my first great holiday! However by mid afternoon I was feeling really horrible. I was back up to a pain level of 8 and it just ruined my holiday, I could hardly eat my dinner I was so upset, which doesn’t help IC. So I was still recovering yesterday (the 28th). But I decided that evening to give the other program a try and see if it would help. I did and the next morning when I woke up I was feeling worse again and just didn’t even give it any extra time. I turned it right off. So I’m back to no battery!!! When I had my last uro appt I had asked him about the neo bladder surgery I would still have the stoma, but I would have to catheterize it and go into a neo bladder and then I would not have the bag anymore. He said he wouldn’t do it because I was in too much pain still and the recovery for that surgery would make the pain worse, not to mention having the extra “bladder” in my internal area which would cause more pain. So…..I was really upset about that. But when I went to get the battery adjusted I talked the the nurse practitioner and she said that I would have to go for about 4 months with little to no pain before I could have the surgery. So…I’ve had about a week with the bad pain. But I am going to recover and then I can look forward to my next appt which she said would be close enough to 4 months that we could bring up the subject again!!! So there’s still hope. I’m praying I’ll be on the road to a level 5 very soon, and then if I’m that low with my pain, we can do the surgery. So I’m praying extra hard these next 4 months so I can be rid of this horrible bag!!!! So on the road to the 15th and hopefully last surgery. P.S- I want to remind everyone that when or if I take extra medication it’s because I called my doctor and spoke with him. PLEASE PLEASE PLEASE don’t do this on your own. Make sure you have a very good relationship with your doctor and be able to talk to him about EVERYTHING!! I am able to call my doctor, he always has the operator page him for his own patients. So I get to talk to him all the time. This may not happen with everyone. So before you take extra meds or change anything, PLEASE talk to a doctor. I make a habit of calling my doctor before I go to the ER. He will ask me to try something sometimes, other times he tells me to come right in. So call before you go to the ER, it could save you a trip and lots of money!!!!

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  • Posted by Cathy
  • 19 Aug 2009

Well, we’re at almost 2000 visitors. When I started this site, never in a million years would I have dreamed I would have reached that many people. I knew some, but not this many. I am overjoyed that I have been able to at least get some information out to people about IC. It’s amazing and I am so happy! Well, now that I’m done telling you the good news, here comes some bad, well, bad for me. I had another cystoscopy on July 17th, it showed that the pinpoint hemorrhages have decreased, how much I don’t know, I’m seeing the doctor soon and I want to see the picture to see how much. That is the good news, my bladder has shrunk, which is typical of IC bladders. But they found out that my vaginal walls are very thin. That could be causing a lot of the problems. I need to do some research about that and then I’ll post it on here. I’ve been on medication to have me not have my periods for 4 years now, and that could be the reason, not enough estrogen. So I go to see my gyno on the 1st so I’ll get some answers then. Which is good because I see my uro on the 2nd so I’ll be able to give him some answers about what my gyno says and if he’s going to change anything in my pill regiment. So, hopefully I’ll get some answers and then I’ll be able to hopefully have the pain subsided some. I’ve started on Lyrica, which has given me some pain relief, I’ve been able to start really walking and exercising and doing more. The only bad thing is that the was that my hands and feet and face were swelling. I tried to get an over the counter water pill, but that didn’t help. So then I got a prescription waterpill, and I can finally see my ankles again! LOL! So things are going really well around here, and no bad news yet, there’s still some pain, but I’m more at about a pain 6-7 everyday now. So you can’t complain to much about that now can you!

 
  • Posted by Cathy
  • 28 Jun 2009

I go to see my urologist on Wednesday. I’m looking forward to it so I can get some answers about some things. I need to know when we can do the next surgery. I would really like to have it done fairly soon. I would also like to get some answers about changing my meds and hopefully not become a zombie again! I feel zoned out a lot and I don’t like it that I can forget what I’m saying and don’t know why I’m going to a certain room for something, or just stop mid sentence and forget what I was saying. Those are the 2 most important things. I also need other questions answered about PT and things like that. But I am starting to feel closed in. I have people coming at me from all different corners it seems telling me I should do this or that, and I’m getting overwhelmed! I feel like I need some time away. I wish I could just go camping by myself or just have some time to myself and have some peace and just be. Maybe I will go buy a tent and just go camping for a weekend to have some me time. I could really use some of that right now. When I saw my pain doctor the last time, he suggested I see a psychiatrist, and I think that’s a good idea. I’m starting to be ready to talk to someone about my problems and just try and get some of these frustrations out! I would love to have an apartment of my own, I’ve always felt I was ok when I was by myself. I got lonely sometimes, but right now I really feel like I need some time to myself. I know it won’t happen this weekend it’s the 4th of July of course. I’m kind of jealous with all the people around me, going places, getting houses, and being able to live a normal life, while I’m here kind of stuck in a rut because of the pain. I don’t know, I just need things to change right now, I’m not sure if they will but I really, really need a change right now.

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