"One Unbelievable Story"
By Kimberly M. (Submitted March, 2006)
Some people are just “plagued with bad health” so-to-speak, and I am one of them! In fact, my mother was sick throughout her entire pregnancy with me! I have already had 12 surgeries in my almost 22 years on this earth – and facing more! Living as a Christian, I have always been given the strength that I need to make it through all of my sickness and suffering – and I have never had to go through any of my suffering alone! My bladder/kidney problems first begin for me the beginning of 2003 (at the young age of 19 and understand that I only had a few bladder infections in my life prior to this, no signs whatsoever of the suffering that was to come)!
The next two years were trial-and-error as I continued going to not only my family physician, but I also begin going to an urologist at the end of 2003! Of course, all these doctors would ever diagnose me with was either a urinary tract infection or emotional disturbance, because after all I am a woman! As you probably have figured out rather quickly it was ALL IN MY HEAD – according to these doctors, who had multiple degrees hanging on the wall – so they apparently knew what was wrong with me, even though they had never even taken one-step in my shoes! * (Note: I am sure that the doctor uses this, as do I sometimes, because we are all quite guilty of saying this: “It is just my nerves!” Honestly, I wish it were that simple because that one problem would be easily treatable, but unfortunately, it is NOT a simple case at all – it is more complicated than you could ever imagine or comprehend!)
In 2003 and 2004, I would continually have a UTI (Urinary Tract Infection) every month, at least that is what the doctor thought it was, but by the end of 2004, I definitely knew two things: 1.) It most definitely was NOT a urinary tract infection that I had - AND - 2.) I needed to find another urologist who would believe me, because the one that I was going to at this time became “burned out on me” – (It did not take the head cashier at McDonald’s to figure that one out!)
In December 2004, I had my second CYSTOSCOPY by my first urologist (Dr. Scott Kelly at Shelby Baptist Medical Center in Alabaster, AL), and this sealed my decision to find another urologist! The doctor did cauterize the ulcers off my bladder and burned my damaged bladder lining off with “Silver Nitrate”! * (Note: I would never recommend this, because I suffered horrible pain with anything that I would eat or drink and horrible burning every time I would urinate, for approximately 4 weeks, only to have my bladder lining grow back damaged – In my opinion, “Silver Nitrate” is out-of-date and should NOT be considered as a treatment for IC patients anymore!) Interstitial Cystitis is a disease that causes inflammation of the bladder and of course, the bladder lining is raw and damaged - that is why IC Victims are unable to tolerate certain drinks and foods, especially citric acid, because it is like “pouring acid on an open wound”!
I begin to learn about this disease after my second CYSTOSCOPY, and really questioned if I had it??? – after all, I did have all of the symptoms! Anyway, I finally was able to go back to church the 2nd Sunday of January 2005 – and I was truly missing everyone, because missing a month of church felt like missing months of church to me! It was a brand new year, and that was also the Sunday that my “IC Buddy” came into my life, and little did we know that 2005 was going to bring both of us A LOT of pain and suffering, and I am sad to reveal that it has rolled over into 2006! The funny part, well actually I consider it a blessing, is that I had gone to church with this woman for three years and never really talked to her, we just never know what someone next to us may be going through, because she did not look physically sick the majority of the time! God promised that we would never have to suffer alone and I do not understand how people cannot believe in God, because for three years the answer was sitting in the pew behind me, I just chose to talk to only certain people about my health problems!
God always knew that the day would come when I would be diagnosed with this horrible bladder disease, that I would need someone who understood me completely, and every time I look at her or think of her or talk to her, I thank God for the miracle that He has sent into my life! I begin to talk to her and learned that she was diagnosed with IC back in 1992 (but feels that she was indeed, born with this “mystery disease” - as I like to call it), and I was just learning about this horrible, incurable disease! She began to tell me about her urologist at Brookwood Medical Center in Birmingham, AL and recommended him to me! I remembered that I had without a doubt, met Dr. Simon Mirelman two previous times, when I was in the hospital with Pyelonephritis, so it was not hard for me to get an appointment with him because I was already in his computer system – now that is proof that God is still in control of things!
Therefore, on January 31, 2005 - I begin going to Dr. Simon Mirelman, and he remembered seeing me in the hospital at Shelby when I was still going to Dr. Kelly! My mother went with me that day, and we had our first discussion about Interstitial Cystitis. *(Note: Dr. Mirelman said that it was an extremely painful disease, that causes chronic pelvic pain and burning, and he would rather tell me that I had bladder cancer than to have to diagnose me with this disease – so that naturally caused me to live in fear more than I ever had before! What makes it even harder, to live with this disease, is the lack of support that you get from some doctors, friends, and even family! The reason for this is that you do not tend to look “physically sick” like cancer patients!)
Dr. Kelly never actually diagnosed me with the disease, because he never did a bladder biopsy! Therefore, at my first appointment with Dr. Mirelman we had to set up surgery on March 22, 2005 (I was in college classes – my 2nd semester of my junior year – so I had to wait until Spring Break) – he was going to do a CYSTOSCOPY and a bladder biopsy! A few weeks after my surgery, in April 2005, I went back to see Dr. Mirelman and my daddy went with me to this appointment – the biopsy results showed NEGATIVE – so I was diagnosed as NOT having Interstitial Cystitis – but the pain and suffering was not ending, and little did I know that it was only the beginning for me! Sadly, I continued having bladder spasms and painful burning after this appointment and finally had to return to Dr. Mirelman’s office on May 31, 2005 – and my life forever changed during this appointment! * (Note: I recollected back on a previous appointment, and remembered Dr. Mirelman informing my mother and me that just because the biopsy came back negative, did NOT necessarily mean that you did not have IC, you could actually be in the early stages of the disease!) Therefore, after Dr. Mirelman continued seeing the signs of this disease, and how it was progressing on me, he finally diagnosed me as having Interstitial Cystitis! (He said that it cracked, when he stretched my bladder, and recalled that I previously had ulcers cauterized off, and the spasms were not leaving, so that pretty much meant that I had the disease!)
After the CYSTOSCOPY (Hydrodistention of the bladder) I experienced relieve from the symptoms for about 4 months… understand that this treatment does not work for every IC patient, and the relief time varies from patient to patient! That is why I refer to IC as the “mystery disease” – the doctors do not know what causes it, there is no cure, and every patient responds differently to the treatments offered! If every treatment tried continues to fail, the only other alternative is removal of the bladder… but in today’s world, artificial bladders do exist!) In late August 2005, I begin to experience burning in my right kidney once again and immediately thought that I had Pyelonephritis, yet again! I have had it two previous times – well, the first week of September 2005, I was indeed, hospitalized with this infection in my right kidney– but the burning in my right kidney continued after the infection was gone and upon being released from the hospital. It was at the hospital, while being treated for Pyelonephritis, that the Doctor (well, the Nurse actually after draining over 700 CCs off my bladder) discovered that my bladder was NOT emptying - so the next week I went in for surgery to have my urethra dilated and the fibers minimally cut going to my sphincter muscle!
Then, 4 - 6 weeks later, approx. on October 24, 2005 my urologist discovered that the surgery DID NOT work! It was in vain - after the nurse drained over 400 CCs off my bladder. So, that day begin the conversation of something that I had never heard of… “INTERSTIM THERAPY”… otherwise known as the BLADDER PACEMAKER… little did I know that the next 3 ½ months of my life was going to be HELL ON EARTH for me! I went to that appointment that day, by myself, and knew that I needed to call Ms. Dot (my IC friend that I was telling you about earlier in this story) and I was not sure, honestly, how she would react! She was so compassionate and loving, and I knew that very night, that this was a person I would always be able to count on for the remainder of my life on this earth – her PRAYERS and SUPPORT are the reason why I have NOT given up! I had to finish my fall semester of college classes sick (but by the Grace of God I still managed to make one A and 3 B’s), while being catheterized on a regular basis, and having to come to the painful realization of who my “true, real” friends were. It is funny how we take little things for granted like going to the bathroom to urinate… but according to everyone’s response when you share a story like this…“It could always be worse” … and I know that this is true… I will continue to praise GOD for giving me just enough strength to make it through each day with a painful burning kidney, bladder, and sometimes both… and I will continue to thank GOD that I can still walk, talk, see, and hear!
Once Dr. Mirelman discovered that my bladder was not emptying, he scheduled a test known as “URODYNAMICS” so he would be able to know what was actually causing this horrible problem! This test was performed on me one cold, “HALLOWEEN” morning , to be exact - October 31, 2005 – I went to Brookwood Hospital by myself for this test – without knowing that I would have to drive home trying to hold back the tears, after being given some rather dreadful news! The results showed that my “Sphincter Muscle” was not opening in order for my bladder to completely empty! I had to begin self-catheterization on a daily basis, after many unfortunate trips to the Emergency Room and Urologist’s offices in order to be catheterized, to have relief! The “Interstim Procedure” was under review with my insurance company from November 16, 2005 – January 9, 2006 - when the doctor and I finally received the letter that the insurance company would cover this procedure!
During the review, I suffered through two months of sheer torture and pain, living day-to-day with an unbearable, burning kidney… and going to college classes five-days a week and working a part-time job on top of that! Before my 2nd semester, of my senior year at college, was to begin, I was so miserable that I needed relief, and medication was NOT working. Dr. Mirelman put me in the Hospital on January 6 and I had another CYSTOSCOPY done, but this time he kept me in the hospital for two days and treated my bladder with irrigation, flushing it out, due to extreme inflammation and irritation! He had scoped me in his office earlier that week, and did not think my bladder was that bad! He got a surprise after looking at my bladder in the operating room, he told my parents that it looked awful and even give us the dreadful news that if the “interstim therapy” did NOT work he was sincerely considering removing my bladder! I came home from the hospital on January 8, and classes was to begin on the 9th, so after praying and discussing the situation with my family, I knew that I was going to have to take a semester off from college – and I only have 7 courses to complete in order to receive my Bachelor’s degree in Business management! I am glad that the University of Montevallo was so kind and understanding and allowed me to take a semester of medical leave!
I am happy to say that the irrigation treatment has definitely sent my IC into a period of remission! I still have burning and spasms, but it is because of the bladder retention (not emptying)! It has been almost three months, and probably 97% of my IC symptoms are gone! I had to wait for a representative to fly in from the “MEDTRONIC COMPANY” to witness this procedure and set my stimulator! Therefore, that was another month’s wait, and I finally was able to know what it is like to be able to empty again and live with a “burn-free” kidney on February 8, 2006! I had to wear the test stimulator on the outside, for approximately 1 ½ weeks, in order to see if it was going to work! GOOD NEWS! IT WORKS! Not only did it allow me to empty my bladder, it also eliminated 95% of my IC symptoms!
During the testing period, I had NO chronic pelvic pain and minimal burning and bladder spasms, and I could even tolerate some foods and drinks that were once impossible for me to have, those including the dreaded citric acid – BEST OF ALL – my bladder was emptying! * (Note: This was approximately 5 ½ months of living in torture and pain, experiencing chronic burning in my bladder and kidney, frequent trips to the doctor and emergency room to be catheterized, and having to be taught self-catheterization, etc. etc. etc.!) During those months, I truly experienced “Hell on Earth” – not just from the pain, but also from people making comments because they did not want to believe that I was truly sick! You know, I have told just about everybody that I have spoken to about this that I must have somehow, at some point and time, prayed for PATIENCE without knowing it, because I was literally “hanging on by a thread” (and it was unraveling) as 2005 was ending and 2006 was rolling in fast!
You know, I realize that we have to go through tests to have a TESTimony and therefore, as a Christian, it only makes your FAITH stronger as you go along life’s journey in this very evil world! I am reminded that the BIBLE says that even the smallest FAITH (as small as a mustard seed) can move mountains and pull you out of the lowest valley! So, just imagine what A LOT of FAITH could do for someone’s life! I am thankful and proud to say that I had a lot of prayers going up for me during this difficult time, and God was surely hearing and answering all of them one-by-one, according to His will! During my times of suffering, I know that persistent PRAYER and my FAITH will always see me through my various storms of life!
Therefore, this brings us up to March 2006, and I wonder sometimes if I could be in the “Guinness Book of World Records” for being in the hospital the most times in one year! The beginning of March I begin to have gastrointestinal problems, dehydrating, and was hospitalized with a viral infection – my white blood cell count was 21,000 and it is only because of God’s Grace and Mercy that I am still alive – God is still in the business of answering Prayers! My whole body was full of infection, and infection can kill you – I continued “antibiotic treatment” for two weeks and finally all of the infection was gone! The only plus side to all of this sickness, is that I am loosing weight and it is correcting a lot of my other health problems – we always have to find a way to see the GOOD through all of the BAD!
I have already been in the hospital every month of this year, and I am still facing the permanent Interstim procedure probably in April – I PRAY! The insurance has to approve this procedure also, and a representative has to fly back to Alabama on a day that Dr. Mirelman is available to do the surgery, so here goes the entire dreadful experience all over again! I will be sure to continue this story, with a PART II, after this surgery is complete!
P.S. Dr. Simon Mirelman and the staff at Simon Mirelman Urology, Mrs. Dorothy Porter and her family, and the Interstim Therapy (Medtronic Co. & Reps.) have all been answered prayers and blessings - well I believe that they are actually miracles - from God! I believe in HEALING and MIRACLES and GOD IS STILL IN THE BUSINESS OF SENDING THEM DOWN TO US!!!! I also find it miraculous that I have only gone to two urologists and was diagnosed with IC within three years! I am aware that some women go to multiple doctors and spend 5 years or longer looking for a correct diagnosis! I believe, IN FAITH, that God is HEALING me and I will be a witness of the power of HIS HEALING!
AMEN! Amen! amen!
Revised: 03/25/06 - kj
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