"After a Lifelong Battle with IC"
By Lesa (Submitted February, 2005)
My name is Lesa Taylor - McCabe. I am 44 and I have had I.C. since 1966, that's 38 years if anyone is keeping track.The Navy dr's my parents took me to told them my bladder was " Small" and I would " Grow out of this"...well, guess what? I didn't. My dad was career navy and we moved alot. Dad wouldn't stop the car every 30 minutes so I could pee, so mom brought a Folgers Coffee can for me to pee in. How humiliating. Right there in the back seat next to my brother and sister. I felt like a freak. When I turned 16 in 1976 my mom took me to the Naval Hospital in Tacoma to see a "specialist in urology". He took x-rays, injected dye into my arm to watch it travel through my system, then they filled my bladder with water and told me to "pee". This is while I was laying on the table under the x-ray machine, with them watching me! I couldn't do it, and I finally couldn't stand the pain anymore and got up and went into the bathroom. This dr told me I had "I.C" and he was going to give me a D.M.S.O. treatment, but he didn't get it into my bladder. When I got up off the table it ran down my legs and soaked my socks and I reeked all the way home.That was my first D.M.S.O. treatment.
This past July I thought about seeing the dr again. I wasn't sure why, after all he hadn't been able to help me in the past, but something told me to go. I had to find a new dr since my old one retired (probably on all that money he made giving me stink treatments, ha ha). The new dr seemed surprised when I told him I had I.C. He said "Oh, what makes you think you have that?" I told him my life's story. He agreed that yes, I surely did have it and he also told me that he knows of no other patient that has lived with I.C. so long. I hold the "Office I.C. Record" ha ha. I am still waiting on my gold medal.
So, this is what being "Normal" is like? I like it, a lot!
Painful sex is all I have ever known my entire life. It's a lot better now, but still I get pressure during and afterwards, but no real pain to speak of. As far as the I.C. diet, I never heard of it before I found this website 6 months ago.....when people realize I have lived with I.C. for 38 years they ask me how I could stand it? I don't know. It's all I have ever known. I was not "Normal" first and then got it later in life, I have always had it. I tell people to imagine having a bad headache 24/7 for 38 years..sure it's annoying and painful but you would still find a way to live your life.
After several months of doing very well and being in remission with Aloe Vera and Elmiron, my IC symptoms came back with a vengeance in May of 2005. I did more instills and took more hydroxizine and more aloe vera, but things just kept getting worse and worse. I did a hydro distension, I had a video urodynamics test, I saw 2 "Specialists at Virginia Mason hospital in Seattle. The results of the uro dynamics test was my bladder capacity was 83cc or 2 1/2 ounces.
I heard about Dr Raz from the "Bladder removal' board here on the ICN, and I contacted him. I sent him all my medical records, hydro photos and a list of the medicines I was taking everyday. ( I was taking 34 pills a day at this time, and had gained over 30 pounds) Needless to say, he was horrified at all I had been through and told me he would do a bladder removal and create a continent pouch with a stoma that I would have to cath in order to pee. I made the appointment for the surgery to be on December 23rd 2005.
I was in surgical pain for a little over a month....once the 2 foleys and kidney stents were out of my belly I felt so much better. I had to go to the ER 2 weeks after the surgery because my back was hurting so bad. I had a kidney infection and was on meds for that....then 10 days later I got a very bad infection called MERSA..I was on I.V. antibiotics 4 hours a day for 5 weeks. This medication made me very nauseated and I threw up the whole time I was on it. Then, in late January I had several days of constant vomiting and went back to the ER (3rd trip in a month). I was admitted to my local hospital for another 9 days. I lost 31 pounds.
I CAN sometimes feel my bladder. I get that pressure that I had for 40 years, and then I remember I don't have a bladder and I tell it to " Go away"...and the feeling is gone. I do feel pressure in my pouch as it get's fuller...also it feels full if I eat. Sometimes my stomach aches a little, but I don't know why...it doesn't last long so I haven't been overly concerned with that. It took me months to be able to eat...I lived on broth, jello, ice cream....anything heavier than that made me sick. I had to carry a puke bowl everywhere I went.
Now I can eat mexican food, have margaritas and pizza and beer and spagetti, oranges, grapefruits, lemonade!!! This surgery has a very rough recovery, and my mind is way ahead of what my body wants to do. I get very tired in the middle of the day. Dr. Raz says this is normal. I try to push myself a little more everyday. I am not on any meds except for my birth control pill, high blood pressure pill, and acid reflux pill. I also take flax oil and a multi vitamin.
As far as leakage from the stoma it is very minimal...I would say about 2 tablespoons per 24 hours....BUT there have been a few times where it is a lot more and I just change the coverings more often. It has taken me until about 3 months to feel "Better". When I saw Dr. Raz earlier this month they found a problem with one of my ureters. I have had 2 catscans, 2 xrays and an Ultrasound in the last 3 weeks. Now they want yet another catscan with dye in my pouch. The findings are that my left ureter is blocked and both kidneys are swollen...so it looks like I will be back in LA for another surgery.....I will keep this story updated.
Lesa L. Taylor - McCabe (Imustpee)
Update to Lesa's Story (April 2007)
May 11th, 2006
I was sent to Virgina Mason hospital in Seattle to see Dr P...he was one dr I had seen in Sept 2005 begging him to remove my bladder. He said he didn't understand I.C. well enough to be comfortable doing a illeal conduit and wanted me to see an IC specialist...SO I saw the best in the USA, Dr Raz at UCLA.
Dr P agrred that there was a blockage of the left ureter and had a P.N.T. tube with a lovely leg drainage bag put into place on May 11th..I puked on the Seattle ferry twice going home.....made for a really enjoyable trip, NOT! Good thing I was able to get the seats right next to the ladies bathroom or things could have gotten really ugly, or should I say smelly..hahha
The PNT tube should have only been in place for a couple weeks but Dr R wanted me to see another dr at UCLA, that specialized in minimally evasive surgeries, and removal of kidney stones, and if that didn't work and he couldn't remove the scar tissue blockage I was to have another big surgery with Dr Raz later that week. Getting both doctors with available time in their schedules for the same week was 9 weeks in the future.
July 11th....so we fly down to UCLA for the 5th time. I am prepped for surgery by 8:00am. No one came for me until 3:00. I have had no food or water since 9:00 the day before. I wake up less than an hour later and was told the x-ray machine wasn't working and they were going to " Squeeze me in " the next day so no food or water. Dr S nurse calls at 9:00am to tell me to be at the hospital at 3:00pm, so back we go..I am starving and have a monster coffee withdrawl headache not to mention my blood pressure was high (200/100). Gee... I wonder why? Stress? Stress? Did somebody say stress??? :o)
This time all went well...the 3 foot long stent was placed and curled in my pouch, up the urethra, through the kidney and 6 inches stuck out of my back. I stayed overnight at the hospital, and once again had the best nursing care ever!
The stent had to be in place for a month, oh joy. I could feel it moving in my pouch, very uncomfortable to say the least. Another month goes by and we are once again in LA, trip #6. Surgery to remove the stent went well but a blood test showed all was not well with my kidneys. I told the dr I had not been feeling well for over a week. I had a creatin of 3.5...0.5 is normal..so they decided to be on the safe side, not only to remove the stent and replace it with another PNT tube and leg bag, " Just to be safe" and to also put a PNT tube into my right kidney with a nice matching leg bag!!.
I couldn't have been more miserable. 2 tubes and 2 leg bags! Ugh!! The dr said we couldn't leave on Sat like we planned and already had return tickets for, but that we had to stay to run more tests on Monday. So after a very long weekend of misery back we go to the hospital. They do a neprostigram and it shows the left ureter is still open..YAY..it's been 4 days so I am very hopefull...they remove the bags but leave the tubes and tell me to have another test done in 2 weeks and if all is well, that my uro can remove the tubes. So on August 25th 2006, AT 1:45 pm, 8 months and 2 days after my surgery I am tube free, bag free, and I have finally got the green light to " Lesa, have a nice life".....
So, after a very long recovery with lots of complications,I can say that this was the HARDEST thing I had EVER done in my life. I never once doubted that I was not doing the right thing, but I knew one day it would all be a memory. I am starting school soon, after 28 years and I am going to be the best medical assisiant I can be...I am hoping to work with my uro soon, and be understanding and helpful to others with IC.
I have an internal pouch, I love it! We are still getting used to each other. Because of it I will have a painfree, long and happy life. I have no IC symptoms at all. NONE. No pain, frequency, urgency...nothing...where my bladder and urethra were is a 'Dead Zone" It's wonderful! I eat and drink whatever I want, and I have painless sex with my hubby and I get to lay there next to him instead of running to the toliet to try and make the pressure go away....... I use a cath is to pee every 4 hours, and I get up once a night. Life is good. I am very happy.
I am almost done with college, May 9th 2007 is my last day....I have maintained a 4.0 average and perfect attendance for 7 months...I start work with a specialist in 3 fields next month....life is great without I.C....I never realized how much I suffered, for 40 years, and life without a bladder is the best thing I have ever done.
Revised: 04/11/07 - jho