• Posted by Cathy
  • 20 Jun 2009

Well, it’s been six weeks that I’ve really been in this flare. I have ups and downs, it’s some ok days, and more really bad days. I see my urologist on the 1st. I still have to do some more research on the Indiana pouch, hopefully he’ll do it sooner rather then later. I have blisters all the time, and they hurt, and itch really bad!!! It’s really annoying. But we’ll see what he says. I have been thinking lately about what I had planned out for my life 10 years ago when I graduated high school. I was going to go to college, then get married, teach for awhile, have kids, and just have the happy white picket fence, 2 1/2 kids American Dream. But all of that has changed. And it’s ok, I’ve accepted it, and I’ll have a new plan for my life. I’m trying to figure out what it is. I’m doing everything I can to raise awareness, and it’s a lot different then what I planned but I can change my plans to adjust to my situation the God has given me. He won’t ever give me more then I can handle! So I’m working on changing my plans and still adjusting to my situation. I know I should have adjusted by now however, I get thrown something new everyday. So I’m adjusting, just a day by day and eventually I’ll be able to make plans for the future, I hope! But we’ll see what happens.

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  • 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!

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  • Posted by Cathy
  • 04 Apr 2009

It’s been a very long time since I’ve written a post on here so it’s time for an update! I’ve been seeing a pain doctor at the Palliative Center in the Cancer Center at Strong Memorial Hospital. He has put me on some new medications. I have had my methadone increased and I now take 15 mg of Oxycodone every 2 hours. I know the oxycodone is the only thing that is keeping me from the ER. I’ve had some good days, but the bad days have won. When I went to my urologist last, they did a super high test catheter treatment (definition to come with all meds included in this in the medication page, I will make a direct link from this page) that numbed my bladder really well!!! I went down to a pain level of 2 out of 10! A 2!!!! That is awesome for me, I live at an 8-9 everyday!!!! I was also able to hold it in for 4 hours!! However, it took me 2-3 days to recover, I felt like I had to urinate at night which they told me the catheter had inflamed my urethra, which was intensified when I laid on my side, and when I laid on my back I had pain, so I ended up getting to bed at 3-4 AM when I was just so exhausted I couldn’t keep my eyes open anymore. So the following week I got a pudendial nerve block (pudendial nerve is located on both sides of the vagina, and they could have gone through my vagina to do the procedure however the doctor knows how sensitive I am so decided to have them do it through my back with really long needles!!)! Holy cow! I was numb on my left side, I couldn’t walk because every time I did my leg would buckle and I would fall! So I walked around with crutches. The numbing was supposed to last 8-20 hours and then I would feel normal (as normal as I get) and the steroids would kick in. Well, it took me four days to recover from this because of the pain! The steroids have kicked in because I have been eating more then usual which tells me that they are taking effect but they are not helping me at all! I feel more pain now then before. (I will write more about the pudendial nerve block in the surgeries I’ve had section and describe exactly what it is.) When I do that I will make a link from this page to that one! So….I went to the pain clinic last week to get evaluated for a pain pump (I will put this in the glossary with a link as well), I was also going to go and get another instillation after the pain clinic. I was turned down for the pump because it wouldn’t help the kind of pain I had and I guess the side effects (like numbness in the nerves in my legs) would outweigh the benefits. Needless to say I was crushed I was hoping for something that would help besides all these pills! So I went and got another instillation treatment as well as prescriptions for all 4 meds so I could do them at home. The treatment went ok, my pain level went down to a 5, but I could really feel the pudendial nerves and I think that’s why I didn’t get as good of a result as before. I was able to hold the fluid in my bladder for 6 hours which is awesome!! I feel like I have to urinate right after the treatment for about a half an hour then it goes away. I had the same effects after with sleeping, feeling like I had to urinate, that feeling being intensified when I laid on my side and then pain when I laid on my back. It took about 3 days to recover. The day after the instillation I woke up and it felt like someone had reached up inside me during the night and pulled all of my insides out!!! The following day I had a lot of pressure. Then I had some sharp pains. I went to take a nap the other day and had pain that felt like it shot out of my vagina, and it went all the way down my right leg. So….I tried another instillation today! I’m supposed to do one once a week, and it will start building up and things are supposed to get better (with the urethra and feeling like I have to urinate and the sleeplessness [I have a lot of that anyway]). I was out all day, like I had been for the other 2. I was able to hold it in for 5 hours this time. I did feel pain where they went in with the needle for the pudendial nerve block, and pain in my hip, and the outsides of my bladder. I was at about a level 5 today. About 15 minutes before I urinated I got a really strong sensation that I had to urinate. I held it for as long as I could and I could only do it for 15 minutes. So I’m having a lot of pain on my right and left sides. I don’t believe the pain is in the bladder, I think I got really screwed up with the pudendial nerve block. I have to find out how long it lasts. Then maybe I’ll get some relief from the instillations. I’m going to keep trying with the instillations and see what happens. It’s supposed to help when you do them every week. There was talk about me doing it 2 times a week, but maybe that will come later! So that’s the scoop for now. I’m in pain and feel like I have to urinate so I think it’s going to be a really LONG night again. I see the pain doctor on Monday and I’m going to ask about some sleeping pills so I can get a good nights sleep! I have a cat scan on Tuesday to see if there are cysts and make sure everything is in place. The last visit to the urologists office I had a bladder scan done. Really cool thing, I never knew it existed! It’s like an ultra sound, however, they have a little machine, almost looks like a lunch box, that is connected to an ultrasound like part that they put directly over your bladder. They have to push down a little. The point of this is to see how much fluid you have in your bladder. I had it done 2 times. The first time I had 130 ML in my bladder and the 2nd time I had 140 ML. So the doctor thinks I could have a cyst, the nurse practitioner was considering mucus build-up in my bladder so they rinsed it out, no mucus came out. So this cat scan is supposed to give us some answers. So we’ll find out soon enough. My opinion is that if these bladder instillations are working so well, I don’t think the pain is residual pain outside of my bladder, I think the pain is still coming from inside my bladder. I’m going to ask my doctor to do another cystoscopy to see if maybe I’ve developed Hunner’s Ulcers.

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  • Posted by Cathy
  • 23 Feb 2009

I apologize for not keeping up with the page lately. With IC you will notice that the pain seems like a shadow that follows you around waiting to strike at any time. Mine struck BAD. About 3 weeks ago I was calling my urologist asking if I should go to the ER (which I hate anyway because you sit there forever and it hurts sitting in those seats for so long), so he told me to go see him the next day. I started on Valium and Lidoderm patches (which are awesome!!!!). So I saw the doctor at the Palliative Clinic on the following Monday. He was awesome he had already read my file, and instead of being one of those doctors that thinks he knows everything from what he read in the file, he wanted to hear it from me. So I told him the whole story, starting with my pain starting  when I was about 18 or 19, up until the present. He was great at listening and he told me that his heart just sunk when he had read the file and now that he had met me he felt the deepest sympathy for me. He wants me to start on acupuncture therapy, get a nerve block pump, and possibly taking my bladder out. My urologist has said no about the bladder coming out. So…..hopefully I can talk to him about it and be able to understand his reasoning behind it. I have been talking to the doctors from the Palliative Clinic since Thursday trying to change my dosage of the liquid oxycodone (the pill form stopped being made in January so if your on the pill form you might want to think about getting a new script for the liquid).  I am taking 15 mg every 2 hours. Well, on Sunday I just couldn’t take the pain anymore and went for my 10 hour stay at the ER. The first 4 hours were waiting. If you have IC you know how hard it is to sit in those chairs when you in so much pain. It didn’t help that I was told numerous times that I was being called next and I watched people who came in after me go in before me. That only made it worse. I finally got called in and they were going to get an IV started but no one could get one started. I had 5 tries by the nurses in the ER, then the called in the SWAT nurse. She’s the one that if you need an impossible IV started, she’s the one to do it. On her 5th try she finally got it. They had given me a shot of morphine previous to my 8 tries, and it helped very little. After the IV got in and I got 3 more shots of morphine the pain started to subside. Finally the pain level got down to a level 5. So I decided to go home. I am now waiting for the Dr. at the Palliative Clinic to make my appointment with the pain clinic to get an evaluation for the nerve block pump. Hopefully they will find that I do in fact need the pump. Well, on a happier note, I am working on a sticker/magnet for cars, which will turn into key chains and other things to raise money for a cure for IC. So….I will be making up a new website to advertise for that and I will be putting updates on this website about the project. I need to get in contact with the appropriate people who will take the money for research, and make a deal with them. So I will keep everyone posted, and hopefully we can get the word out about IC!!

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  • Posted by Cathy
  • 07 Feb 2009

A week ago this past Wednesday I had a severe flare up. I thought I was done with those. I spent 3 days in bed, and called the nurse practitioner asking to increase my meds. I heard nothing the first day. I ended up calling after hours for my doctor and he told me to take extra methadone and go see him the next day. So I went to see him, and he prescribed me some lidoderm patches (just a heads up, any time you get patches for pain, you need preapproval from your insurance company), and he also prescribed me some Valium, and gave me a shot of toradol in the office (the nurse hit a blood vessel and lets just say there was a HUGE mess on the floor!). Last Monday I went to the Palliative Care Center in Strong. The doctor was amazing, he listened and just was really awesome. I was in there for an hour and a half. He had already read all my files (which is really amazing) and then wanted to hear what has been happening from me. He told me when he was reading the files it broke his heart and then to see me sitting there in front of him was really hard knowing how much I have gone through.  We talked about a lot of different options. He started me on Aleeve since the toradol had worked for me for like 2 hours, and he wants me on something stronger then hydrocodone. He started me on oxycodone with no Tylenol in it, so I can take it more often then every 4 hours (so my liver doesn’t go along with everything else in my body). So I have started those meds, I still take the Valium, and put the lidoderm patches on at night. It does make a big difference with the patches. I haven’t really started feeling a difference with the meds, I am taking 8 a day (my Max daily dose), so we’ll see what happens once it starts building up in my system, today is only my 2nd full day on the new stuff. Other options we talked about were putting some sort of nerve block type thing in me that will release medication at certain intervals. We discussed  acupuncture, which I am for. There is a great center in Canandaigua however, with my car being broke down, I shouldn’t be driving in the first place, and it’s quite a ways away, he’s going to look into other options. I’m going to keep my mind open about this one, and see where it takes me. The last option we talked about was removing my bladder. But he has spoken to my urologist since my appointment and he’s not too keen on the idea. I would like to have it taken out. I know just like every other treatment out there it has a 50% chance of working, but I’m afraid if I do get straightened out and I do reconnect it will come back. I can’t do this again. It’s hard enough the first time around and to think it might come back is even more scary! So I think I’m going to talk to my urologist about this, and see where we end up. So looks like I might have a couple more surgeries and some different types of treatment. Hopefully something will work! I am still spending the majority of my time in bed because it is the most comfortable place for me right now. Fortunately I have been approved for disability (and on my first try!!!)!! So I went and purchased a lap top with my retro pay, so I am able to keep up to date with things more easily now.

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  • 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.

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  • Posted by Cathy
  • 19 Dec 2008

Sorry I haven’t been updating lately, I have been busy making Christmas presents. Update from the doctor’s office is- to lower the muscle relaxer down to once a day (at bedtime) because it is making me so tired, and to start doing daily bladder instillations.

Since it has been a week, I have tried lowering the muscle relaxer and it’s causing quite a bit of pain, I started taking 3 again on Thursday. So I did give it a week to try out. I haven’t started to instillations yet, I have to get the syringes and needles. I have the lidocaine, that is all I will be using since I can no longer get my hands on any heparin. So I’ll update with details on how that works. Happy Holidays!

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  • Posted by Cathy
  • 10 Dec 2008

I turned my battery back on Monday. The last time I was at the doctor’s office a woman who is trained at adjusting the settings, adjusted all of mine. Previously to her adjusting the settings, everytime I turned any setting it felt like it was in my tailbone and would send me through the ceiling! I’ve had the battery turned of since April when I had my bilateral nephrostomy bags. I turned it off to see if it was the nephrostomy helping me out or if it was the battery making me feel better. I turned it back on after my urostomy surgery to see if it would help when the pain came back. But the pain from the battery was worse! So 4 weeks ago when I was at my doctor’s appointment they switched the settings. So far one of the settings that used to be really good doesn’t help, it makes things worse. I turned on another setting on Monday, it is making me tired again and I”m not noticing any changes, it seems to be giving me more pain. So I think I will be turning it off tonight, and hopefully get a good nights sleep! So we’ll see.

So…more about my google alerts. I haven’t found anymore wacky sites but I found a new web page today, called medhelp.org. On there you can register, and keep in contact with other people who have IC. It is a nice page, there are a lot of people on there who contribute to posts daily. Quite a few I have found that are new to IC and just starting out. Oh! Another things I found was a new medication called Uracyst(R) that is currently approved in Canada. They are going to try and get it approved for the United States in 2009. It is a sodium and chondrotin sulfate solution which is supposed to supplement and replenish deficiencies in the GAG layer of the bladder. It sounds good. The only thing the site did not offer was whether or not the medication was working well for people taking it in Cananda. The web site the article was on is the CNN web site. Hopefully this will help a lot of people!

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