"It Just Takes One Step At A Time"
An Intimate Look At The Diary of One Patients Experience With IC & Bladder Removal
By Kara
Reese
Editors
Note - Kara's story is an extremely unusual one. IC patients rarely require
bladder removal. In Kara's case, the doctors felt that her bladder had
been badly damaged in early childhood, which would explain why so many
therapies didn't appear to work for her. Upon surgery, it was discovered
that her bladder was perforated and required removal.
Kara's story, though, is both courageous and inspiring. She showed great courage and tenacity as she perservered through pain, through the judgements of others to regain her life. By sharing her diary with you, she can open your eyes and your heart to the plight of someone , so young, who is struggling with IC.
Kara is now happily married and, as you can see from her surgery update, has improved dramatically. We commend her for sharing her experience with us! Kara, you're a true IC hero for doing this. We so appreciate this very personal and courageous gift! - Jill O.
Bladder Surgery Updates:
Friday, July 18, 2003 - LATEST UPDATE
I CATHETERIZE MYSELF EVERY 4-6 HOURS. I DON'T FEEL ANY URGENCY, FREQUENCY, RETENTION, OR RETENTION PAIN.I DON'T FEEL ANY IC PAIN EITHER. I TELL PEOPLE IT FEELS LIKE A DOWN PILLOW REPLACED MY OLD IC BLADDER. I AM DOING WELL EXCEPT FOR MANY INFECTIONS, WHICH, WE ARE CURRRENTLY WORKING ON CONTROLLING (THE FIRST YEAR CAN BE A BATTLE WITH THEM UNITL THE NEW BLADDER ADJUSTS TO ITS NEW LIVING QUARTERS.) THE INFECTIONS DO CAUSE PAIN BUT IT'S CONTROLLED WITH PAIN MEDS. I AM STILL 100% HAPPY ABOUT MY NEW BLADDER AND WOULD NEVER GO BACK TO MY OLD BLADDER IN THIS LIFETIME.
My history ---
Surgery (June 14th 2002 was the initial surgery at 7AM in the morning)
Each day is a struggle. Sometimes I feel good for a few hours and sometimes I feel like I was hit by a truck. Thank you so much for your kind words and support. When my doc went into my abdomen he was SHOCKED to say the least. My bladder could only hold 3 oz. Any more than that and it would start to leak. He said there were so many adhesions and scar tissue in there that it felt like a ball of cement and was the size of a walnut. The bad part is that my IC was so bad that the scar tissue infested the entire outside of my bladder. This scar tissue was inflaming all of the other organs in my body. The surgery took 10 and 1/2 hours All of my other organs down there were swollen severely. So………..Yes I made the right choice. He told my family that there was nothing else we could do. I had a bad allergic reaction to morphine and had to be restrained by my mom, dad, best friend, grandma, and Allen. I was trying to run away from the hospital because I was in so much pain and the morphine made me crazy. For 3 hours they had to hold me down so I would not flee. I tried to bite the IV's out of my arms. I kicked, screamed, yelled, cried, and said every bad word known to man. All in front of my family. EMBARRASSING!!!!!!!!!!!!!!! To say the least. I was supposed to be in the ICU for 5 days but they needed my room for a stab wounded victim. I went up to the regular hospital floor for 3 more days, the hardest part was not being able to make a bowel movement. Unfortunately our stomachs wake up way before our bowels do after that long of a surgery, so we did have a lot of trouble regarding that issue right up until 14 days after the surgery when I could finally go. I came home and started recovering in my own bed and seeing a visiting nurse daily. (By the way, my Grandmother was a nurse for 30 years and stayed by my side for 2 weeks.
2 Weeks After Surgery
I had to go back into the hospital 2 days ago because I could not stop vomiting and I was having severe back pain. They did X-Rays, Cat Scans, Ultrasounds…….the works. They found a kidney stone…….YAY!!! The kidney stone is not ready to rear yet so he will be blowing it apart in a few months from now. He was afraid that I had already been through too much at this time so he wants to leave it be for a bit.
The recovery time is about 3-6 months, so I have a LONG way to go. The hardest part is trying to keep still and not go out. I hate lying in bed all day. The pain from where the incision is does not hurt at all. It goes from 2 inches above my belly button and all the way down to the pubic area. I have 2 tubes left in me, a supra-pubic and a Foley catheter. (see below for pictures of the surgery) I have a nurse that comes in daily to check up on me and change my dressings.
2 and ½ Weeks After Surgery
Our 1st year Anniversary was on the 29th of June; my surgery was the 14th. Keep in mind, I have several tubes and bags and staple dressings. So I had to wear somewhat baggier clothing than I normally use. Otherwise I would have worn a sexy tight dress, but it was just not possible. I don't even know how I pulled off what I wore last night. My Hubby wanted to try and make the best of it so we ordered a 3 course meal from a phenomenal Italian restaurant down the street. My mom sent us 50 dollars to help pay for it. I set our new table, put some of our wedding pictures on the side of the table where no food was occupying and lit 2 wedding candles that were a gift from one of our guests. (see below for pictures of the Anniversary) While my Husband went to get the food I washed my hair, sprayed my body with some great body spray from bath and body works and anchored my supra-pubic catheter down as far as I could get it. I removed my bed bags from my catheters and hooked the leg bags on. I secured them snuggly to my legs, threw on a black slip, a new skirt that I had never worn, and a new black silk shirt that my mom bought me that I had also never worn. I put some great strappy sandals on, did up my make-up, and waited in the candle light for my Husband to get back. When he walked in he dropped the food on the table and gasped! "OH MY GOD, WHERE IS KARA AND WHAT DID YOU DO WITH HER!!!!!!!!!!!!!!!!" He told me I was stunning and he cried tears of joy and love. I pulled off 50 songs on the computer that were played at our wedding last year and we listened to all of them as we ate and after dinner. We cried, laughed, and just held hands. I wanted to make love to him so badly it hurt down there!!! I pray that one day we will be able to make love again with out pain. He went to bed and I stayed out in the candle light and listened to the soothing music. Later I opened our balcony door and sat outside and listened to the music one more time. It was one of the best nights of my life and I will NEVER forget it. I guess God was looking out for us today and made it possible for us to celebrate the best way we could.
3 Weeks After Surgery
The pain is minimal if I take it easy. If I try to do too much I have to take a pain killer. My husband helps me take a shower. The catheters have to be irrigated because the new bladder is made of intestine and the intestines create a lot of mucous. We irrigate them with saline 3 times a day. The supra-pubic catheter is the grossest thing I have ever seen. There is a hole in my pubic area where it comes out of. It's ugly, scary, and it hurts when it gets moved around. Gross I know, but this is part of the deal. I have been eating regularly. I have been able to have regular bowel movements but they are runny, this will pass with time, as they cut 1 foot of my small intestines to make the new bladder. I can walk around a bit but not too much. I like to keep my house clean so I try to pick up here and there but I get yelled at by my Husband………only problem is he won't do it so the house will look like Hell if I don't keep up with it. He does the heavy things like vacuuming and taking out the garbage. Mostly, I lie in bed and listen to books on tape. As of yesterday I have been getting extremely nauseated and dizzy………I had blood work done. I have a very low red blood cell count and a very high white blood cell count. I am needing more fluids (Gatorade is the best) and iron tablets, as well as continuing my antibiotic, Levaquin. I have an appointment with my Doctor on Wed. I think the Foley catheter may come out then, which means I will have to start learning how to get the urine out with a small catheter. Overall my new bladder is healing well and I am following a normal recovery. It just takes one baby step at a time! In 3 months I hope to be my crazy old self (only with a new bladder) J I hope all goes well with self cathing!
4 and ½ Weeks After Surgery
Every day I feel a bit better but I know it will take lots of time to be back to myself. I am learning how to self cath and it's really hard and I hate it. I was leaking from the urethra after we took the Foley out a few days ago. He said that the 20 French Catheter that was in my urethra stretched it out and that it will take some time to get it back to its normal size. He also said that the supra-pubic is causing the bladder to expand and contract abnormally because it's a foreign object in there. He put me on DitropanXL for the leaking and it's working. No more leaking anywhere. I hate my supra-pubic tube! I originally had 4 sutures holding it in but now I only have one and it hurts so bad because it's pulling on the skin…………I can't wait for it to come out. I will be talking with my doc on Monday and we'll reassess the situation he may want to take the supra-pubic tube out. We are still having trouble with the mucous but we irrigate three times a day. Right now I am cathing every 2-3 hours. I hate doing it, I cry every time. My husband helps but I want to be able to do it by myself and I can't right now. I hate it. It hurts at the opening of the urethra but once it's in I don't feel a thing. It's just learning how to get it in that is the problem. I can report to you today that there has been no pain, no urgency, no frequency! I lost 3 pounds but have already gained it back and I have no nausea at all. The only thing that hurts is the supra-pubic tube that is hanging barely on one suture…………The sooner I learn how to self-catheterize, the sooner this ugly tube comes out.
5 Weeks After Surgery
All of my tubes are now out. The visiting nurse does not come anymore, as she is not really needed. I catheterize myself every two- three hours. The catheterizing has gotten much easier as time has gone by. I don't need any help with it and I've already done it in 3 public places with no trouble at all! It's a part of me now and I don't mind doing it as long as it means a better life. My doc told me it would not hurt because he cut the nerves from my bladder to my urethra or something like that, and he was right. I can't feel the catheter at all in my urethra or my new bladder. The only time I can feel it is if I am poking the wrong spot. Hehe!! I'm doing really well, a little urgency if I forget take the Ditropran XL, but I was told this will pass with time; no frequency, and no retention pain, although, sometimes I still have surgery pain from having the bladder removed, scar tissue removed, 1 foot of intestines cut off to make the new bladder, and the making of the new bladder, and the hook-up and recovery of being out for 10 and ½ hours. I take my pain killers only as needed.
This past 3 days I have had severe diarrhea from a bug I caught from my Husband. I was really sick as you can only imagine after having this surgery on top of it. I'm feeling a bit better now and will continue to report my story.
I have to go back to work on Aug. 7th, that is when my short-term disability runs out. I am as of now for the past 6 months, been getting paid my full compensation $755.00 every 2 weeks. On Aug. 7th, if I am not able to return I will lose 40% of my salary and my heath insurance. Allen still has no job and I am freaking out. I just went out into the community to see if I could run some errands and I am already at a pain level of 7, so I don't know what is going to happen to us. I am scared and really stressed out……I'm hoping that new door opens real quick and we can get out lives back on track.
If anyone has any questions they would like to ask, feel free to do so, I am a very open person and open to any questions. I am not shy about this surgery, who would be after something like this? No question to me is considered dumb or embarrassing, so ask away. I am here for information and support. I will answer questions as I feel up to it, it if takes me a few days to answer, don't worry, I didn't forget. I have a few questions myself for those of you whom have had experience with the Neobladder.
6 weeks after surgery - July 25th 2002,
Today my bladder is well. Actually my bladder and urethra have no feeling at all. When I feel pain, it's due to the other organs around my new bladder adjusting to this new bigger bladder. I've been drinking lots of water and I have been going to the bathroom every 3-4 hours. There is no pain, no urgency, no frequency, no retention pain.........I would say today was was a perfect 10 for my health. My doctor is filling out my LDT paperwork. I'm sad about not having a job, but I am not ready to go back. He told me today that I had 3 surgeries in one day, MAJOR surgeries. The ilium being cut is major and takes months to heal, the cystectomy is major and takes months to heal, the creation of the neobladder is major and takes months to heal and all of the scar tissue he took out around my bladder will take some time to heal. So he said I was accurate in not trying to push myself back to work.
So most pain that I will be feeling is surgery pain and not related to the new bladder at all, it has no nerves to feel pain.
He said as the months go by that I heal, I will have some phantom urgency and other IC symptoms buthe says with time that will all be gone and I am considered IC free....
Sunday, August 4th, 2002
I don't even know I have a bladder anymore. I feel nothing down there where the old bladder used to be. There have been no phantom attacks of any kind over the past 3 weeks. I feel like a child in at an amusement park, that just won the BIGGEST stuffed toy that exists and one hand holding some nice pink cotton candy! Now, I tread very slowly as we speak because as you all know, anything can happen and anything is possible, so I am being very cautious about telling everyone that I am IC free becuase there's a part of me that fears it will come back and there's a part of me that thinks it still exists, and yes I am seeing a therapist for these feelings and my Husband sees her too.
But as far as the past 3 weeks, I have no urgency, no frequency, no pain, and no retention pain.........sometimes I forget to chatheterize myself because I have no feeling down there. My Husband keeps reminding me to do it. As far as cathing myself, I feel nothing. He promised me that he would cut the nerves to my urethra so I would never feel any pain down there again, and he was right. I don't feel the catheter going in and I don't feel it inside of my new bladder. In fact, I know I am in the right spot when I can't feel it going in.My Husband still has not found a job, and I have lost mine and my doc whom has cancer has not had the time or the strength to fill out my long-term disability paper work, so I am going to be missing some pay checks. My parents as well as Allen's mother can NOT help us, so we may have to flounder for awhile.........I have tried to seek state aid as well as county aid and town aid and Allen and I are making too much money even on unemploykent and Disability to qualify for any type of aid. I was on the phone for 3-4 hours on Friday calling everyone I could. This situation is NOT h4elping my recovery. It's all I think about, what's going to happen, where are we going to live, what jobs will we have, when will any of this get better, why can't we find someone to help us out............I am seeing a therapist but I still feel defeated, depressed, and alone. I feel like this is never going to end. It's one thing after another. If I had the strength I would be helping my husband search for jobs, (he's beyond depressed and I can't even get him into the shower.........) but I DO NOT have any strength mentally or physically to do this yet. I want to but I am just as depressed as he is. We have no where to stay and that is what scares us the most becuase once my long term disability runs out wich will be in 2-4 months, we will have to move home because we can not afford to live in the Boston Area anymore. The bladder is great and I am happy about that but weary. I feel there is so much stress right now that I might screw the surgery up. But I keep going. I can't wait for the chat rooms to be up and running. I miss you all!
August 18, 2002
I am still cathing every 3-4 hours. I am in LOVE with my new bladder! It's my best friend now instead of my enemy! I'm excited but still staying reserved for trouble should it arise.
This is before I had my bladder taken out……
A day in the life of living in Kara Reese's body. I get up at 6:00am for work. I drag myself out of bed because I was up all night going to the bathroom. I get myself ready, and head out for my hour commute. Every bump I hit on the road is like a punch in the bladder. It feels like there is a fire rolling around and around with no escape. The fire is heavy like a bowling ball that is trying to come out of my urethra. The pressure is unbelievable. It's hard to get out of the car after all of that. I drag myself into work and pray that today will be the day that will change my life because by some hope of a miracle, maybe this silent destroyer will decide to leave me in peace and drive someone else insane. Not an hour later, what they call "urgency" (I call it PAIN), creeps back between my legs. I think, maybe if I just hold it, it will go away, so I try to hold it a little longer, the phone rings and someone needs my help. Before I know it, I'm running to the bathroom as fast as I can because I am about to throw up. As soon as I go, I get some short lived relief. I go back to my desk to try and get into my work. An hour later the pain approaches again. I repeat this whole cycle throughout the whole day. Sometimes the urgency stays with me the entire day and NOTHING relieves it. I compare this to a splinter that's stuck in your eye and you can't remove it. It's really hard to do anything when I'm in that much pain! I try to get into my work but it's impossible. When this happens I want to jump off of a cliff! My co-workers are wondering where I am when the phone is ringing and students/employees are lined up at my desk to fill out paper work. I tired to keep this a secret for so long. Eventually they had to know the truth.
On a good day I will have had 12 trips to the bathroom. On a bad day, try over 80! I've tried many medications. This is what happened with the following meds: Dicyclomine, Ditropan, Ditropan XL, Detrol, Detrol LA, Pyridium, Pyridium Plus, Levsin, Nortriptyline, and over 62.5mg of Elavil; all caused this rip roaring NIGHTMARE they call "retention" (I call it HELL). It feels like someone has ripped your fingernails off, one by one. It starts out with the urgency. I try to go to the bathroom to relieve it, but……….I CAN'T GO………….I CAN'T GO AND I'M IN PAIN! I'll sit in the bathroom for 10-20 minutes and try to get something to come out. Even just a little drop might help. I try turning off the light (this is so I can focus), running water in the sink, dribbling warm water down the pubic area, deep breathing, holding my knees up to my head, pushing on the bladder, turning the light back on and then I repeat some of these things. Thank God I have my own bathroom with a door that locks. I go back to my desk and try to work again. I can't think about anything because the pain gets worse and worse. I try to go every few minutes but nothing will come out. Minute by minute I grow more and more uneasy. I have to tell my supervisor that I have to leave because I can't go to the bathroom. She looks at me like I'm insane, probably because I do this just about every 2-3 weeks. My co-workers say to me, "well you don't look sick?" I know I don't look sick on the outside, but there's a raging battle going on inside of me! My next stop is either the Emergency Room or my doctor's office to get catheterized. I've tried to do this myself but it hurts too much! My urethra is always raw and sensitive, even to the slightest touch. It feels like I'm shoving a knife up there! I feel more comfortable leaving it to the professionals. The pain is relieved while the catheter is in, although, a few days after the catheter comes out the whole cycle starts over again. I have to call in sick when the retention happens. I try to go back to work to do my job but it's damn hard when this disease haunts me, constantly.
I try a surgery called the Interstim. I miss 3 weeks of work. It takes 3 months before I notice a difference in my trips to the bathroom. With this device, I can make it for 2 hours at work and 2-6 hours (only if I don't drink anything) at home, if I'm lucky. The 2-6 happens once in awhile. It's not consistent. The Interstim does nothing for the retention and nothing for the days I'm in severe pain. I can't drink anything, even with the Interstim because it means more trips to the bathroom. If I try to drink any amount of fluid in a day, I will be running to the bathroom every 10 minutes, even with the Interstim. I can't sit, stand, drive or engage in any physical activity for long periods of time because my lower back, bladder, and urethra get so sore.
The pain is still there and I'm still getting up 4-6 times a night. I tried several more medications: Elmiron, Cardura, Prelief, Celebrex, Tagamet, Claritin, Vistaril, Trazodone, Xanax, Imiprimine, Nortriptyline, Ibuprofen, Darvocet, Oxycodone, Hydrocodone, Hydromorphone, Meperidine, Neurontin, Celexa, Effexor, Depakote and Wellbutrin. These all cause horrible side effects such as severe depression, itching, mania, urgency/frequency and or retention. Some days I have urgency, frequency, and retention at the same time (3 of which are THE WORST SIDE EFFECTS)! This leads to SEVERE PAIN! Every time my doctor hands me a new prescription, I get excited and hopeful. Maybe this will be the one. The excitement continues until I take the pill. Only to realize for the 48th time, this medication isn't the one. My bladder takes the side effects by responding with, urgency, frequency and or retention. Then the disappointment, sadness, frustration, and anger set in, until the next appointment. My life revolves around my doctors.
By the time I get home from work, I am so exhausted and in so much pain, I can barely make it up the stairs to my apartment. After I get home, I eat dinner and go to bed at 6:30-7:00 because I know that I'll have to get up early, with no sleep, and do this all over again the next day. My husband never sees me because on my days off, all I do is sleep. It's even hard to sleep because I'm in pain while I'm sleeping. Every night there is at least one dream that consists of throwing up, catheters, and toilets.
My work has suffered enough to cause verbal warnings. I keep trying new medications in hopes that they will make me feel better, so I can make it to work. They all seem to cause horrible side effects, which cause me to miss more work. My job has warned me that if I take any more time off of work, they may have to let me go but then I can't pay for the medical attention I need in order to get better, in order to work! I wanted to get on my Husbands health insurance and try to work part-time, but this is now, not possible. My husband lost his job due to layoffs 3 months ago, and in order to keep my health insurance, I have to keep working full-time. I'm losing my mind! I'm not sleeping, haven't eaten a decent meal in weeks. I am losing all hope. My Husband's job loss has made this whole nightmare even worse! I desperately need time to heal physically and just as important mentally! I can't handle this anymore! I am losing all hope that there may be a light at the end of this long, long, tunnel.
This disease has been so hard on me. I was planning on continuing my education to get a Masters in Psychology. It has been my dream for many years to become a Junior High/High School Psychologist. I was barely able to finish my last semester. I wouldn't even think about trying to go back while trying to battle this horrible disease. I can't imagine missing a class. I was a straight A student, never missed a class in college.
I have no
life. My friends don't understand what is going on and they say that I'm
no fun anymore because I can't go out to drink and dance with them. I
miss my social life. I miss dancing. I miss drinking. I miss staying up
until 3:00 in the morning on a Saturday. I miss meeting new people. I
miss my spontaneity. I won't go out because I never know what my bladder
will decide to do.
Sexual intercourse is out of the question because it's too painful and
I spend the next 2 days on the toilet, trying to relieve the pain it has
caused. I have tried creams for it but they don't work enough for me to
want to have sex on a regular basis. I miss having sex. I miss cuddling
with my Husband, but cuddling naturally leads to sex, so I don't cuddle
with him anymore. I can't even kiss him for fear that he might get turned
on and I don't want to disappoint him by turning away from sex. He avoids
me and I avoid him. Our talk consists mainly of IC and what we should
do about it.
I went to two pain management specialists, one at Marlborough Hospital and one at New England Medical Center. The specialist in Marlborough said there was nothing he could do for me except trying a nerve block. I tried the nerve block but it did nothing for me. The specialist at New England Medical Center said the same thing. He talked about a pain pump. He said that it would not be a good device for me because of the sensitivity I have with narcotics. He talked about a back nerve stimulator. He felt that it wouldn't help because it was basically the same thing as the Interstim and the wires of each device would tangle and cause more trouble. He suggested another nerve block.
I keep wishing
and hoping that together we can find something that will work, some combination,
but it's not happening. I feel like a horrible, nagging patient. I feel
like I am a nuisance to the office. No one wants to be "that psycho
patient" that keeps calling and calling. I have failed just about
every medication and surgery. I can't handle this anymore. This is no
way to live at 25.
3 MONTHS LATER
My bladder pain, urgency, frequency, and retention is 100% relieved by having the indwelling Foley Catheter in. For the past 3 months while wearing it, I have been most grateful of having the luxury of no pain, no urgency, no frequency, and no retention. It's been life changing, not having to run to the bathroom a million times a day, in pain! For the first time in years I have been able to sleep 8 hours with out moving and without pain! My body feels at peace for once. I've been able to drink and eat everything I want to. It's been a nice rest. Is there something we can do to make it possible for me to feel this way all of the time, not just when the catheter is in? I want to keep it in forever but it's so limiting and unattractive at 25 years of age.
My History is on the below:
Other Medications
tried that had too many side effects or just didn't work: Elmiron, Cysta-Q,
L-Arginine, Aloe-Vera, Cardura -racing heart, DMSO, Prelief -urgency and
frequency Vioxx Celebrex Tagamet Claritin Vistaril -severe depression
Trazodone - severe depression Xanax - severe depression Imipramine - severe
urgency and frequency Nortriptyline - retention, depression, anger Ibuprofen-
itching and mania Oxycodone- itching and mania Hydrocodone- itching and
mania Hydromorphone-itching and mania
Meperidine- itching and mania Neurontin urgency and frequency Wellbutrin-panic
attacks and agitation, Celexa-myoclonic seizures, Effexor-myoclonic seizures,
Depkote-severe heartburn
Procedures
done:
Cystoscopies, Biopsies, Hydrodistentions, IVP's, DMSO, Bladder Scans,
X-Rays, Laparoscopy, Interstim Trial, Interstim Sugery, Lumbar Sympathetic
Block, Lumbar Epidural Block, Urethral Dilatations, Stricture Surgery,
Massage, Acupuncture, Allergy Elimination Treatments
Revised: 3/01/05 - kj
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