WHAT IS IC?

IC/PBS- Interstitial Cystitis, also known as painful bladder syndrome, is a disease of the bladder, that results in recurring discomfort or pain in the bladder and/or the surrounding pelvic region.


The symptons can vary greatly between individuals and even for the same person throughtout the month.


Symptoms include: a frequent need to urinate,

pressure, and pain

urgency to urinate

pains levels range from mild tenderness to intense, agonizing pain.







Friday, January 28, 2011

Typical Flare Triggers
(1) DIET - The most common IC flares are diet induced. There is nothing sadder than talking with a patient, crying in pain, who has never been told about diet. One IC patient called our office quite desperate, bemoaning the fact that no therapy had ever helped her. She later admitted that she drank a six-pack of ginger ale each day. In our opinion, few therapies would work when various irritants are assaulting the bladder, day after day.

(2) HORMONES - The bladder is extremely sensitive to the hormone changes that occur each month during the menstrual cycle. However, each patient may respond differently to hormones. Some patients flare when their progesterone levels are higher, while others flare when their estrogen levels are higher. Many women struggle with an IC flare on the day that they ovulate and a few days before their period. The good news is that these hormone-induced flares are often predictable and short term. One thing that you might find helpful is to do avoiding diary for a few months and also track your menstrual cycle. This will help you determine if you are having any hormone induced flares and will also help you see that they can be very short term and often not worth worrying about.

(3) VIBRATION - If you had a broken leg, would it hurt if you shook it up and down? Well, yeah! When an IC bladder is jarred or bounced around it can hurt, thus driving, flying and traveling are well known IC triggers. In fact, one research study found that 50% of all IC patients had pain while driving or riding in a car. The culprit is the vibration of the car on the bladder and pelvis. Because the bladder and surrounding muscles are already so sensitized, jarring and bouncing over roads can create more irritation and also trigger painful muscle spasms. Thus, IC patients frequently report that they cannot drive long distances without experiencing great discomfort. If you’re in an IC flare, it’s best to limit car travel to short distances.

(4) STRESS - Does stress cause IC? Not that we’re aware of but it can certainly trigger an IC flare. IC patients frequently report that their symptoms worsen during periods of high physical or emotional stress. Consider the fact that when patients get very cold, they often have more bladder symptoms. Emotional stress creates similar reactions in the bladder through no fault of the patient. In the past few years, several IC researchers have focused on how nerves in the spinal cord and bladder react in highly stressful situations. They have found that intense stress causes an euroendocrine response throughout the body, brain, spinal cord and that appears to be contributing to our bladder symptoms and pain levels.

(5) CHEMICAL EXPOSURE -
 Do you have a very sensitive sense of smell?? If so, you're not alone. Many IC patients seem to have varying levels of sensitivity to smells, sounds and, yes, chemicals. IC patients often report that various chemical exposures and/or medications can trigger an IC flare. The usual culprits are soaps, detergents and laundry products that leave an irritating chemical film in our clothing or skin that can irritate our sensitive tissues. Sometimes harsh smells in the home, such as cleansers, can trigger discomfort.

(6) VITAMINS & SUPPLEMENTS - Visit any IC support group and you’ll find that most patients can’t tolerate multivitamins of any type. Multivitamins are well known IC triggers because they contain Vitamins C and B6, both infamous for irritating the bladder and creating discomfort. Patients often do better when taking individua lvitamins and/or supplements, such as a simple Calcium Citrate pill. The book “A Taste of the Good Life: A Cookbook for an IC Diet”has an extensive discussion of vitamins, as well as suggestions on IC friendly forms of each.

(7) SEX & INTIMACY - A number of IC patients report that sexual intercourse can trigger an IC flare. Men with IC may experience a searing pain at the moment of orgasm. Women with IC often feel their worst 24-48 hours after intercourse, with increased levels of frequency, urgency or pain. Men and women can also struggle with intense pelvic floor muscle spasms. Read more in the ICN Guide To Sex and Intimacy.

(8) EXERCISE - Exercise, particularly workouts that involve the pelvic area, can trigger an IC flare. Bicycle seats put unusually high pressure on the pelvic floor muscles, thus exacerbating ICsymptoms. Other patients have reported that workouts that jar the pelvis, such as running or stair master, can provoke pain. Exercise is possible as an IC patient, but it’svery important to pace yourself and pick your exercises carefully.

This post was from the
http://www.ic-network.com/

Pain with Flares/Urethral Symptoms

  • Pain: Flares can provoke mild to severe pain. During most IC flares, the pain worsens as the bladder fills with urine and may be relieved after urination.  Bladder pain is most commonly felt in the subrapubic region, directly above the pubic bone. However, it’s not unusual for pain to radiate into the lower back, upper legs, perineum, rectum and/or reproductive tract. Women may complain of vulvar, vaginal or clitoral pain while men may experience pain at the tip of the penis or in the testicles. Both men and woman have reported that their urine may feel hot or burn during urination.

  • Urethral Symptoms: Some patients experience discomfort entirely in their urethra. It can be a sharp, burning pain.
  • Information on Flares

    For many patients, flares can be the worst at night when there are fewer distractions and it's much harder to ignore. Here's a typical flare. A patient may go to bed at 10PM and by 11PM they've woken up with a strong need to urinate. They might actually empty their bladder of, say, 1/2 cup of urine. They return to bed, to awaken at forty five minutes later with another intense need to void. Their bladder may feel very full, but when they try to urinate, only a teaspoon or so of urine comes out. They then return to bed, and sometimes within minutes, have yet another sensation that their bladder is very full. But, when they actually urinate, nothing comes out. They then struggle with symptoms of frequency and/or pain for the rest of the night, often resulting in little, if any, sleep. Sound familiar?? You are not alone!
    Perhaps the most frustrating symptom is the "false" sense of fullness that drives you to the restroom over and over and over. Your bladder may feel so full that you desperately need to urinate but when you try, there is little if any volume. You might strain and strain only to get a drop of urine. (Straining is BAD! Don't do it!)
    Why does this happen?? The bladder has two sets of nerves. One set controls urinary frequency (alpha afferent nerves) and the other, normally silent, nerves control pain signals (c-fibers). When the bladder becomes irritated, the first nerves that usually react and become irritated are the nerves that control frequency. Thus, when you have a flare, often the very first sign is increased frequency and a need to urinate. The pain nerves are much harder to activate but once they do turn on, they can cause overwhelming pain and discomfort. So... that "false sense of fullness" is really sign that you're in a major flare and that your bladder is severely irritated. And, yes, if you drink coffee or soda at this time, you're a fool because that will only irritate the nerves more.
    This was from the  website http://www.ic-network.com/

    Please E-mail

    Please email me if you need encouragement
    or prayer. I would love to hear from you.

    Thursday, January 27, 2011

    Encouragement for the Soul

    The Lord always has the right timing.
    He can see beyond our circumstances,
    where our eyes
    our limited,
    and our vision is small,
    He knows the future and our minds cannot conceive what great and wonderful things 
    He has in store for us.
    Sometimes, while in the middle of the crisis or whatever you are faced with, it may seem that
    God has abandoned you,
    He hasn't!
    I have learned that trusting Him, even when I don't understand, gives me 
    perfect peace.

    I have some verses I would like to share that have encouraged me to carry on,
    and have given me Hope that only Jesus can give!

    May the Mind Of Christ

    May the mind of Christ my Saviour
    Live in me from day to day
    By His Love and Power
    Controlling All I do and say
    May the Word Of God
    Dwell richly
    In my heart from hour to hour,
    So that all may see I triumph
    Only through His Power
    May the peace of God my Father
    Rule my life in everything
    That I may be calm to comfort
    sick and sorrowing,
    May the Love of Jesus fill me
    As the waters fill the sea
    Him exalting self abasing
    This is Victory!
    May I run the race before me
    Strong and brave to face the foe,
    Looking only unto Jesus as I
    Onward go.
    May His beauty rest upon me
    As I seek the lost to win
    And may they forget the channel,
    Seeing Only Him!

    I went to a bible study yesterday with a dear friend of mine.
    While we were in group discussion, a lady mentioned
    how this song gave her strength everyday to lean on
    the Lord.
    It has lifted me so much.


    SURGERY IS MARCH 2
    Yippee! Skippy!
    I can't wait.
    Even though it won't cure my I.C.
    it will help 70%.
    I'm ready for that!
    I'll take my 30% and be thankful!
    LOL!
    It is my prayer that if someone is hurting out there,
    and depressed because of the pain,
    You will call on the Lord,
    He will help you,
    There is Hope.
    I am here to say,we all feel at times that God isn't listening,
    But He is, and He cares about you!
    Rest on His promise-
    He will never forsake you!





    Tuesday, January 25, 2011

    Excited about surgery?

    Hello folks!
    I am happy to report that by the first of March, I will finally  have a hysterectomy.
    Praise the Lord! This is some of the best news yet!
    Having a hysterectomy will help to improve my I.C. symptoms about 70%.
    I'm really looking forward to getting back to business around here.
    When mom is out- everyone is just a little bit grouchy.
    I have to say, my husband has stepped up and become quite the "Mr. mom."

    The book I mentioned, Life Without Limits, is becoming  one of my favorite books of all time.  There are some amazing videos to watch.
     You will be blessed!!!!
    I promise.

    Nick Vujicic, No Arms, No Legs, No Worries! Part 1

    
    Here He is!

    Monday, January 24, 2011

    Too Much Fun

    Good morning Everyone!
    This weekend was one of the best weekends I've had in quite a long while.
    Even with some issues, it wasn't as hard on me as it has been.

    I have to rave a little bit about my primary care physician. She has transformed my life by prescribing to me just the right medicine. This has been a long and exhausting process attempting to get relief from the pain.
     It has kept me from walking, or being able to join in with my family on even the smallest task.
    After just two days, I was a new person. I am able to walk without trembling in pain, and function
    for longer periods of time.

    This medicine is crucial to me and I have to take it every 4 hrs, But I am thankful to God for it.
    Thank You Dr. Lisa Sachdev, D.O. -You have changed my life!

    I am excited about a new book I am reading, Life Without Limits by Nick Vujicic. He is a christian, and travels around sharing his story and offering Hope to others. He was born without any limbs.
    His spirit and enthusiasm for life are very inspiring to me.

    Lord, Help us lean on Your Strength even in our trials.

    Don't give up! Call on God when your down.
    He has the answers to turn it around!

    Thursday, January 20, 2011

    Doctors, Doctors!

    I had some blood tests taken today. Hopefully, everything will come back clear.
    The results will be in on Monday. I'm praying for a good report.

    Tomorrow is begins the weekend! Yee-haw!

    Don't give up!
    You can do it!
    Pull up your boot straps and come on!

    Wednesday, January 19, 2011

    Weight loss???

    I have been loosing weight since I begin my DMSO installations. I'm not sure if  the two are related
    or if  loosing weight is caused by my new medicine, stress, or a combination of both.
    My appetite is completely gone. That might not be a bad thing if I wasn't so sick, and hoping for surgery soon. Just one more thing to pray about!

    I am very thankful I am not flaring out of control anymore. That is a huge blessing.
    One day at a time!

    Lord...Help us all to rest in your strength.

    1John 4:15-If anyone acknowledges that Jesus is the Son of God, God lives in him and he in God,
    16- And so we know and rely on the love God has for us.

    This is my Hope! May it be yours too!

    Don't give up...you can do it. :)


    Tuesday, January 18, 2011

    Human Again!

    Hello Everyone.
    I had physical therapy yesterday for my bladder and pelvic floor wall.
    I know this sounds strange, but it really helps me. I'm learning so much about my body and  about muscles I didn't even know existed.
    Currently, I am receiving biofeedback training and E-stimulation therapy.
    The e-stim. is somewhat painful for me, so we are taking it slow with this one.
    My physical therapist is excellent- I would recommend her to anyone.

    Please email me for more information if you are interested in learning all about her.

    Hang in there! Don't give up!
    Call on the Lord, He is my source of strength....He can become yours too!

    Friday, January 14, 2011

    Some Relief!

    Yesterday, My husband took me to the doctor to get some pain meds,
    The Doc. gave me a shot, and a few other things.
    Wow! What a difference! This really has helped  to take the edge off my pain.
    I'm sure I'm much easier to get along with.

    I'm anxious for Spring! I think it's one of my favorite seasons.
    I also love the fall. But, Spring brings Hope for new life!
    A fresh new beginning with the beauty of nature all around us!

    Don't give up!
    You are strong, pull up your boot straps and carry on!
    Love to all!
    Cindy

    Wednesday, January 12, 2011

    Sunshine

    Yesterday, I felt Hope for the first time in a long time! I wasn't flaring as much yesterday morning, & towards the afternoon, I was able to piddle slowly around and feel like a "human being" again.
     Thank You Lord!
    Has anyone read, Raisin in the Sun by A. Hanberry?
    I think this will be my next read.
    I hope everyone has a wonderful day.
    Don't give up!
    You can pull through with the strength of the Lord!
    Jeremiah 29:13
    "And ye shall seek me, and find me, when ye shall search for me
    with all your heart."
    I'm claiming this for myself.

    Tuesday, January 11, 2011

    My Really
    Awesome Husband & me!

    My Sweet- Precious Mother and Daddy

    

    (Holding nephew Camdon)
    

     Emma's Hugs

    is the non-profit organization my sister & her husband, Kelvin have created in Emma's honor.

    Emma's Hugs, Inc.

    (I am holding Emma.)

    Proceeds to benefit

    Emma's Hugs, Inc. & Batten Disease Support & Research Association

    http://www.emmadunnam.blogspot.com/ 

    Tuesday, January 11, 2011

    Good morning to everyone!

    This weather has me soooooo freezing! I have been very down and sick lately.
    Not really myself.
    Ready for Surgery, and want to feel Better! :)
    I appreciate all those who have been praying for me.
    THANK YOU!
    My sister  & her husband brought over some soup for my family the other day.
    I was able to hug my niece, Carleigh, she is the cutest little thing; It meant alot. I pray that after the surgery, I am more myself.
    I have been snappy, and sometimes just plain down right rude!
    Sickness can take over and kinda make you crazy!
    I want to be back to my happy,peppy..........."Cindy."
    My poor family has been so sweet to me during all this stress.
    THANK YOU TO; MY HUSBAND, MY KIDS, MY PARENTS, MY SISTER, MY AUNT CHARLENE, MY BEST FRIEND AND PRAYER PARTNER, I couldn't make it without you guys!
    Y'all are all very special to me.
    I love you. Hang in there with me, it won't be long until I'm back to feelin' good again!

    Thursday, January 6, 2011

    Please ckeck this out

    I AM ESPECIALLY FOND OF YOU
    This is a very special blog. My sister, and her husband Kelvin lost there baby to Batten's Disease last February. The blog is dedicated to her memory,and others who have or know someone with Batten's Disease.
    Please take a look!

    It's a miracle!

    Good morning everyone!
    Today is January 6. I can't believe I am up at this hour, let alone blogging.
    But, here I am. 5:09am.
    Yesterday, was my third bladder installation.
    So far, I am not sick, but it was excruciatingly painful.
    Thank God I have a pain doctor now.
    One day at a time.
    Physical Therapy has been going better.
    The first time, she thought i was turning into a demon.....LOL!
    It was a rough day for me. (I'll leave it like that!)
    Lookin up! Not down!
    Goin turn this thing around!
    God Bless Everyone Today!