My hormones are coming down.

My hormones are coming down and I've been able to cut back on they Keppra by half. While I am not thrilled about getting a period, I am certainly glad to get rid of that horrendous phantom urgency. I think it's a good sign that it at least waves in and out with the hormones at least in isn't steady so I know it's not permanent. Over the next week I'm sure I will have a few bad days but I will get through it with the help of the Lyrica and the Keppra with hope. I coud not sleep last night but then again I never can the night before the period. I hope when it's over I get at least one good week to enjoy myself before having to take the extra Lyrica that makes me sleepy for two weeks. I will see how long I can go doing this and then decide if it's more worth it to try the low dose progesterone for the month as my OBGYN had suggested if all else failed. But so far this month was doable with that meication combo. I am learning to be good at self-cathing and getting the hang of it. I keep forgetting to go and sometimes have to set my cell phone alarm clock to remind me as to not get an infection. I'm going to look for a good book on my ipod to pass my day. Just an update!

Kara

Having a few bad days due to too much activity and hormones!

I am having a few bad days in the midst of my good week. My period is due any day now and I am feeling the phantom urges once again. I pray that this goes away once the period comes and goes. I was getting excited and starting to celebrate my good week. Hopoefully this will be just a minor setback and just that "a few bad days" they are bound to pop in on me. It's just so hard when the come unnanounced. The only thing I can do is stay in bed and not move. Taking more medication does not help. My phantom pain is just being spiked by some overactivity on Saturday (walking to ice cream) and an impending period. I just needed to vent my feelings for yesterday and today so I can appreicate the days when I feel great! This is a way for me to look back and say, "Oh yeah, I remember why that happened and what to do to make it better." The whole reason for writing this journal was to chronicle the good, bad, and ugly so others who have this surgry know that they are not alone and that some things are just normal in the recovery process.

Hang in there Kara, it will pass!

I am tube free! That is a BEAAUTIFUL thing!

Today is a little over 3 months after my surgery. I am happy to say that I am catheter/tube free! No more tubes or bags hanging off of me. It's a beautiful site. I can wear all of my normal summer clothes now. No more skirts and empire wasted shirts. We've stumbled across a medication combo that seems to be working for the phantom urgency. We are using Keppra and Lyrica together. I am praying and crossing my fingers that this keeps on working and I can start my life again. I would like to start walking and taking pictures and listening to books on my Ipod out on my balcony in my bathing suit. For the moment I am a bit tired from the Keppra but it's worth not having the severe urgency eating at me every minute! I guess if Keppra and Lyrica are helping then that must mean that it is Neuropathic pain which is good because it may go away in several months to a year. I am very happy right now. I am cautious (still worry about the urgency) but I am happy! After all of the sad and depressing things I post, I wanted to celebrate something positive to my recovery. I just wanted to report a happy day!
Positives for today: Catheters are out! Medication Combo keeping me comfortable for the moment. I can wear my clothes. I feel like a woman!

CSI Miami's Calleigh Duquesne is another woman of inspiration to me.

This is Emily Proctor. She is the Sourthern Bell that plays Calleigh Duquesne on CSI Miami.

"She learned to master a gun, that a woman can do everything a man can, and that protecting justice was the highest call of all. Protecting justice became the call of her life. her knowledge of firearms gained her the reputation as the "bullet girl," and she was soon asked to join their crime lab. Not long after that, her boss received a call from an old friend in Miami, Horatio Caine. Miami-Dade was looking for a ballistics expert."

Calleigh Duquesne on CSI Miami is another woman that inspires me in life. She is smart, intelligent, and absolutely beautiful.

The name of my car and one of my favorite women characters.

From CSI NY this description of Stella is why she is one of my favorite characters.

"Detective Stella Bonasera is half Greek, half Italian and all New York. She speaks her mind and does not back away from confrontation. Stella’s fierce independence and unflinching character led her to join the NYPD. To fellow officers, she is the Statue of Liberty, a woman standing tall with her head held high. These qualities, along with her intelligence, brashness and determination, earned her a coveted spot as a CSI NY alongside Mac Taylor."

I have named my car Stella because my car is much the same as she is!

Surgery is Over. Now I can REST!

It was a long day and I am 100% exaughsted. The morning started out scary, I had an allergic reaction to something in my Saline Solution and could not breathe. Theyn figured out that I must be allergic to one of the preservatves in it. Allen was with me and the nursing team seemed to be right on the ball and stopped it quick. They gave me a different type of Saline after that and I did fine. The surgery went well. The anesthesiologist was so nice and helpful. He told Allen and I that he felt really bad about what happened in NYC and that he would personally see to it that while in his care, it wouldn't happen. It went smooth and the surgery went as planned. I didn't wake up and I don't remember a thing and I didn't feel a thing. There were calcifications around the catheter and that is why it would not come out. My doctor did a good job. I have catheter in my stoma for a few days and a bag to collect the urine. This way it will ensure that the hole on the suprapubic side will close up nicely and quick. I am so relieved that it's over. I came home and slept for hours. Some of my fear is down but my guard will always be up. The foley that is in my stoma, I can take out when the suprapubic hole is closed over. When I had my first cystectomy it took two days. I hope it's the same for this one.
Now I can REST!

IC and what it does to us!

I"ve taken to this new singer, Natasha Bedingfield. She sings this song called "Wild Horses" and it reminds me of how I feel about what IC has done to me and how I want to be free.

Natasha Bedingfield, "Wild Horses"

"I feel these 4 walls closing inMy face up against the glassIm looking out... hmmIs this my life im wonderingIt happened so fast How do I turn this thing aroundIs this the bed I chose to makeIts greener pastures i'm thinking about hmmWide open spaces far awayAll I want is the wind in my hairTo face the fear but, not feel scared. wild horses I want to be like uThrowing caution to the windI'll run free tooWish I could recklessly love, like im longing tooRun with the wild horses, run with the wild horses! I see the girl I wanna beRiding bare back, care free along the shoreIf only that someone was meJumpin head first headlong without a thoughtTo act and damn the consequence I wish it could be that easyBut fear surrounds me like a fenceI wanna break freee ee yeah ohhAll I want is the wind in my hairTo face the fear but, not feel scared. wild horses I want to be like uThrowing caution to the windI'll run free tooWish I could recklessly love, like im longing tooI wanna run with the wild horses, run with the wild horses! I wanna run too."

Hormone Nightmare and Phantom Urgency!

I'm in the two week stretch of waiting for my progesterone to go back down. It will be after I get period. I wanted to say something to anyone who is closley following my frustrating story. After my reconstruction, my surgeon pulled me off of most of my medication so we could see if his surgery was successful. One of the meds he took me off of was the Keppra that had helped me awhile back, several months ago when I was in the hospital to have an epidural put in because of the whole Ovulation and Nightmare that follows Ovulating deal. Well I was at my wits end on Thursday because the phantom urgency was so bad, I just wanted to go back to the hospital for another epidural. I had a full bottle of Keppra, called my Pain Management Specialist and asked if I could take it just for these two weeks and then stop it after the high progesterone period ended. I've been trying it and getting a bit of relief, not as much as I would like and not enough to get me doing chores around the house or going out but enough to keep me comfortable. So I am taking right now, Lyrica 150mg 3x a day, Keppra 1000mg 2x a day, Klonopin 1 mg at bedtime, and Iderol (for heart palpitations). The Keppra seems to be helping for now, I just hope it doesn't stop working after it has built up into my system. Maybe two weeks will be just the trick. I didn't want to have to take any more pills but what can you do when you are suffering so badly and there is no where else to turn and hopefully it will just be temporary. Trial and error with these things. One hour at a time. I am really trying here to make it through this.
Kara

I had an infection for almost 3 months. The results came back.

For 3 months, I've had a Klepsiella all this time and based on my tries to get urine cultures done this whole time, the Urologists would not culture or give me any antibiotics. Even though I had two catheters in me for 2 months and one left in catheter for 3 months. Even though I told them I knew I had an infection from day one, they didn't listen or care. My urine was full of junk and smelled so foul and it was green and came out like syrup. Finally I decided to go to my Primary Care Doctor to ask him to please do a culture and to put me on an antibiotic while we waited because I was getting sick to my stomach, had severe back pain, and a bad headache. There were also huge chunks of blood coming out of my Suprapubic. He agreed with me that it should have been taken care of sooner and he was sorry I was treated that way by the Urology team. The results came back with the Klepsiella infection count over 100,000. I am going to stay on the Leavaquin until my surgery on Tuesday. I feel better in the sense that I am not sick to my stomach, no more back pain, and no headache. The phantom urgency is still spiked due to ovulation so I will have to wait 2 weeks until my period comes to get some relief and we'll go from there. One month at a time. This is what can happen during the recovery time of 6 months to a year when dealing with bladder removal. You have to be ready for anything. It just sucks when doctors don't listen to their patients.

Kara

Revenge of the Hormones #2

I talked with my OGYN today.She says since we think I already Ovulated or am about to this month. I have to wait until next month to take the low level of progesterone. I mentioned that if progesterone is the hormone that irritates my urethral area, then why would giving me progesterone make it better. She explained that the high level of of progesteone that comes right after Ovulation is what irritates my urethral area. She explained that every day we all have a low level of progesterone running through our bodies. Her goal is to give me this low level not to disturb my whole month but to stop the ovulating so that a high level of progesterone doesn't spike a flare. I am scared to try it but they are pills so at any time I try taking them, if I get urethral symptoms, then I can just stop it and hopefully she will come up with another plan.I'm just trying to pull out as many tools as I can to make my recovery more comfortable. I am so sick of this! The next two weeks are going to be aweful. I have to suffer with it. It feels so raw and exposed, even though it's gone. I guess if this is the only thing that I ended up with after such major surgery than I should be greatful.

Kara

UGH! Celiac Disease

After I had my reconstruction. I developed Celiac Disease. It's basically an allergy to anything that has wheat in it which is just about everything. Bread, Pasta, and much, much more. My mom developed it at age 52 after having a Hysterectomy. She had to give up all of her very favorite foods. The only things we can eat are meats, rice, potatoes, salad, milk, and that's all I can think of right now. Celiac Disease is Hereditary. This confirms to me that IC is autoimmune and that other diseases go with it and that they could keep coming over the years.
The technical information on this disease is as follows: "A lifelong autoimmune intestinal disorder, found in individuals who are genetically susceptible. Damage to the mucosal surface of the small intestine is caused by an immunologically toxic reaction to the ingestion of gluten and interferes with the absorption of nutrients. Celiac Disease (CD) is unique in that a specific food component, gluten, has been identified as the trigger. Gluten is the common name for the offending proteins in specific cereal grains that are harmful to persons with CD. These proteins are found in all forms of wheat (including durum, semolina, spelt, kamut, einkorn, and faro), and related grains, rye, barley, and triticale and must be eliminated. Celiac Disease may appear at any time in a person's life. The disease can be triggered for the first time after [I]surgery[/I], viral infection, severe emotional stress, pregnancy or childbirth. "
They symptoms include:
abdominal cramping, intestinal gas, distention and bloating chronic diarrhea or constipation (or both) steatorrhea -- fatty stools anemia - unexplained, due to folate, B12, B6, or iron deficiency (or all) weight loss with large appetite, or weight gain
dental enamel defects osteopenia, osteoporosis bone or Joint pain fatigue, weakness and lack of energy infertility - male/female depression aphthous ulcers
Just wondering if anyone else has this too or suspects they have it. As soon as I stopped eating breads and pastas and everything on the list not to eat, I started to feel better. I hate the diet but what else can I do. I don't want to damage my intestines. Thanks to my mom we caught it right away.

Kara

Revenge of the Hormones and Phantom of the Urethra!

I'm back at the Ovulation Time of the month and like last month my hormones are just going to make the next two weeks REALLY BAD. This time of the month makes my phantom urgency intolerable. I want to SCREEEEEEEEEEEEEEEEEEM!!!!!!!!!!It's been one day and I already can't bear it. I guess I am going to have to call my OBGYN so next month this may not happen. She mentioned giving me a low dose of progesterone so that I won't ovulate and thus don't have to deal with the flare every month. I wonder if she could give it to me now...Hmmmmm I may call tomorrow to ask.

I was afraid this would happen. I was afraid I would have the surgery to remove the urethra and then it would not make a difference and my hormones would still drown me every month. My fears were not unfounded because it's happening! The Lyrica is not touching the pain of the urgency and niether is the lidocane patch. I am at a loss once again. I knew what I was asking for with this surgery but I didn't know that my hormones would be such a HUGE issue. I hope this is just part of the recovery and it goes away with time but GOD this is so much to handle.

I just want to have a normal life, work, play, have children, laugh and love.

I just want a rest and some peace.

Why, Why, Why,

I am miserable.............

Kara

Feeling sick

I still have this suprapubic catheter. It's been in for 2 and 1/2 months now. It throws out green mucous but my local urologist told me that this was normal. So I have just ignored it and clean it twice a day. I went to my sister's graduation/birthday party this weekend. I did all of the packing and the driving. I stayed up until 3 AM and then got up Sunday at 8 AM and started to help clean things up because the party was wild and slightly out of control. I did not drink at this party, just stayed up late. I woke up today and had a slight stomach ache. I have not changed any medications nor have I eaten anything out of the ordinary. I started having diarhea mid day and had to take some immodium. Then I layed down and gradually started to feel worse and worse. I don't have a fever. I don't get fevers, even with the worst infections. My urine does not seem odd, smelly, or green. I am going to call my Primary Care Doctor tomorrow because this local Urologist seems to not care about things. I've had one urine culture this whole 2 and 1/2 almost 3 months now and it was because I had to BEG for it! I think it's time to have another one! And some bloodwork. And possibly more. The suprapubic is irritated and hurts to touch it. I wonder if it's infected inside of my bladder? I would go to the ER but they NEVER actually DO the URINE CULTURE so why go? I've asked them every single time to do the culture and they just forget or don't do it. I am afraid to wait until tomorrow but what to do. I guess if I continue to get sick I will call the local urologist and see if he can order the ER to do a urine culture if I go in for it. I am not thinking straight.....I just don't know how to handle this but to call the doctors and ask them what they want me to do. This catheter should have been out LONG ago! And when they could not get it out they should have given me an antibiotic after poking me with all of those things and pulling on the catheter and trying to pull it out. It just seems wrong to me that I have to wait until July 18th to have this out when it won't take more than 10 minutes to do.

Today: My Primary Care Doc is all booked up today but the secretary thought it best that I see him and not one of the Nurse Practioners based on my symptoms and the complexity of the situation. They are suppoed to call me back to see if they can squeeze me in with him today. They didn't want me to wait until tomorrow. It's probably nothing as usual but I want to be safe about this. My Husband is worried because I was up all night with stomach pains and back pain. I had to take a vicoden for the back pain it was so bad. I don't usually take narcotics now unless I absolutely have to. So that shows how much I was suffering. I hope they can get me in. I've prepared a urine sample already. It's in the fridge to keep from growing anything that isn't really there. They can't get me in until 4pm which means my urine sample won't go out until tomorrow. One more day to wait. Grrrrrrrrrrrr. I don't understand why I can't drop off the urine sample now and then go to my appt at 4 then the urine will at least have gone out.

Kara

Going to my monthly Pain Management Appointment Today.

Today I am going to my Pain Management Appointment. I am going to tell my doctor that the Lyrica is working to a degree. It takes the edge off but does not work for the real bad days. I am, at the suggestion of one of my girlfriends, going to ask for Lidocane Patches as an add on to the Lyrica and see if they help any. I am still waiting for my surgery on the 18th of July to have the catheter removed from my abdomen. I am hoping that will help some. The less medication the better. I will write more when I get back.

Went to the Appointment. They were super nice today! I am able to try the Lidocane Patches, they gave me enough to last 2 months worth of samples. I met with a new Nurse Practitioner who was really nice. They are going to up my Lyrica so right before and after I ovulate, I can take an extra 150mg for the two weeks that I may suffer. We are going month by month. If that doesn't work they told me just to give them a call. They seemed today to really WANT to work with me. The nurse practioner that will be taking on my case from now on said that she was really excited to meet me. She says most of her patients aren't as proactive and that it makes it easier for her to help me. I told her I wanted to start a support group for IC patients in my area because there really isn't one that I know of. She said that she can help me do that when I am ready.

It was a good day regarding doctors. There are not many of those!

Kara

This week

I've been busy this week doing some small chores around the house and running some small errands. This is good thing because before I could not do anything but stay in bed and suffer. On my good days, I am going to try to get up and use them to their fullest. On the bad days, I will take care of myself like someone who is still recovering from reconstruction.I am waiting for my surgery on July 18th to have my Suprapubic catheter removed, still learning the ropes of catheterizing myself. I'm trying to keep busy, praying that the phantom urgency will eventually go away. I have dreams of the future.

The Phantom of my Urethra is there, inside my mind!

The PHANTOM of the urethra is there, inside my mind!
It comes when it feels like it.
I am having a rough day and last night with the phantom urgency. I wish I knew what triggered it and how to help it but I don't. And no one else does either. I wish it would go away.

Kara

Do you belive in Ghosts and Spirits?

While on our trip we encountered some strange things. In the bathroom through my camera lens I spotted a round ball of light. A BIG one! So I snapped a photo of it and when we looked closer we could see 6 of them. I was trying to get a good shot of the bathroom for us IC folks. If you click on the photo you can view a close up of it and maybe you can see the other balls of light. I took maybe 6 or so photos but this one is odd. They appear in other photos around the room and the mansion and I took over 100 photos. They do not appear anywhere outside of the mansion nor do they appear in the other photos I took and have taken around my house. We could not start our fire in our room. We had to have maitenance come and it took them over 2 hours to get it started. They could not figure out what was wrong. I tried to start one of the fires in the library of the mansion and it would not start either but when I went downstairs to the living room, I was able to start that one. We went to sleep. Sometime in the middle of the night, I woke up screaming really loud. My Husband was sitting upright snapping his fingers as loud and fast as he could. I asked him what he was doing and he said, "Something in my dream told me to sit up and snap my fingers really loud and fast, so I did." Then we went back to sleep. The next morning I was trying to dry my hair and the hair dryer just stopped working. I reset it a few times and tried a few different plugs but still nothing. That evening we were going out to eat and I went to use try the dryer again and it worked this time in the same outlet that I originally had it in. The following night we lit some candles later because we could not start the fire once again but this time the piolot light was on. My Husband wanted to make me a "fire" of candles. One of them right in the middle of the row just blew out and it wasn't sinking into the wax. The other candles remained lit. We joked around that this "ghost" must not have liked anything that had to do with heat. I guess it could not be in the room with us unless it was cold. Some skeptics say these are just dust particles in our pictures but I'm not so sure. I know I have dust in my house but it doesn't show up on the camera. I believe in spirits. I think this one was just playing with us. I did not get a bad feeling when I was in the room or the rest of the mansion. The Belhurst castle is rumored to really be huanted though. "The ghost of Belhurst Castle is that of a beautiful Italian opera singer, who fled from Spain with her lover. One night the couple raced to their secret tunnel. Just when within safety the tunnel collapsed killing the opera singer. Over the years, dozens of guests have reported seeing a woman in white standing silently on the front lawn in the middle of the night. " I have a photo of the lady that owned and put up the castle. See what you think. I do believe in some of this stuff. My Husband is on the fence about it. We'll see what happens when we go back next year. Needless to say, it takes my mind off of the harsher things in my life. It's a distraction.

Kara

HOPE

I saw my OBGYN today and she said that if the phantom urgency goes away with time and it isn't bothered by my own natural hormones then I have a good future ahead of me. She says that reproductively, I am looking healthy and young despite the bladder removal and reconstruction. She said that should I become pregnant by a miracle, we would just let nature take it's course, NO FERTILITY DRUGS, that it's ok to carry a baby. I see my surgeon in September and I will confirm this with him as well to make sure.

So some day after I heal and the phantoms are gone, maybe, just maybe I will actually have a baby. I am only 30, so I have lots of time to heal and decide.

For all reasons possible I just hope the phantom urgency goes away with time and I don't have to take the Lyrica for ever. I just want to take it for a short time maybe 6 months to a year and then I will try to go off of it and see if the phantoms have gone away.
We may just let God take this into his own hands and if it's meant to be it will happen and if not, we will follow another path in life.

Good News for Today even if we choose not to go down this road. Just some Good News after all of the Misery I've gone through over the past 7 years.

It's good to have some sort of HOPE in life and I've had none for a VERY LONG TIME!

Positives for Today: Phantom Urgency is down, Catheterizing is going well, Surgery Date is set for July 18th to have the suprapubic catheter removed and my OBGYN is on the same page as I am with how we are going to proceed. If I am having trouble with the Ovulation again this month, all I have to do is call her and she'll stop it with a low dose of progesterone and if that doesn't worik, she'll try somthing else.

We had a Wonderful Time!

We are back from our Anniversary Vacation. It was everything we hoped for and more. My bladder gave me a few good days and we ran with them. We did all of the things we wanted to without the thought of my bladder. We got to use the hottub and fireplace inside of our room. It was restful and relaxing. I am thankful for a few good days.

To view a close up of the photo, just click on it.