Reaction n. -A response to a stimulus.  A reverse or opposing action. (The Free Dictionary)

IC Reaction n. A painful response to food, water, chemicals, herbs, smells, stress, drink, sexual intimacy, hair/face/body products, medication, cleaning supplies.  The list for IC Reaction is not inclusive and can vary by person to person and from moment to moment.  (Carin Willis, IC Patient Definition)

It can be difficult having IC no matter if your case is mild, moderate or severe because of all of the aspects of our bodies and lives the disease touches.  I sometimes hate having to defend my choice to eat certain foods, abstain from using swimming pools and hot tubs and using certain body products for fear of it causing a painful reaction.  People can usually grasp the concept of a painful bladder disease but it is usually more difficult to understand the allergies to food, drink, chemicals, etc., or that by ingesting any of the aforementioned items might cause a horrific flare-up of pain. 

I personally still have the occasional reaction (some IC patients call them flare-ups) to foods that other people might prepare or by trying out a new shampoo that is touted as being free of chemicals and made for "sensitive people".  It is a frustrating part about living with IC.  The one thing I have learned to control is my reaction to a reaction.  Instead of flooding my body with more panic and fear, I try to calm my fears and remind myself the painful reaction will pass away in 24 hours or less.  I drink extra water to try and flush the reactionary items out of my body.  It's the little things that can make a huge difference when dealing with IC and all of its machinations of pain and confusion.

IC pain comes in torrents heightened by flares caused by water, food or stress.  Sometimes the pain is a constant burning painful companion to the IC patients' daily life.  Clothing is too tight and too painful.  Some people ease their pain with ice packs while other people can only find relief from heating pads.  To add another layer of pain but also bringing emotional components of sadness, shame and shock is the pain that comes during or after sexual intimacy.

Whether you are a woman or a man suffering from IC we all share the commonalities of suffering from the same pain and symptoms.  Reflecting on our shared pain and symptoms started me thinking about the fact that we also have lives to live.  We cannot hide or wallow in the pain buried in our bedsheets while the clothes, dishes and bills pile up.  Children need to be dressed and taken to school.  A lot of people with IC hold down full or part time jobs in addition to carving out time to drive to IC treatment appointments and to have their IC pain medication prescriptions refilled.  We are people with IC but we are also, at heart, people.  IC can define us, but ultimately it is only a small, although painful, piece of who we are.  If we look past the pain, shame and sleeplessness we are artists, neighbors, parents, siblings, co-workers, spouses, children and so many other titles.  To end with one of my favorite sentiments about IC is appropriate: I have IC, but it doesn't have me!

I don't know about you, but as an IC patient I am looking for understanding, not unsolicited advice.  I am looking for support for the pain that I've endured, the treatment choices and IC diet plan that I've stuck to, not personal attacks from strangers, friends or family members who do not understand.  I am hoping for a day when IC treatments are shared amongst all IC online support groups, doctors, health care providers, pharmaceutical companies and holistic practitioners and remedies.  Where we are no longer on two different sides of the fence, hording our knowledge and secretly thinking that if all the other IC patients would just do, try, take, or get this treatment done then their IC would be: healed, better, manageable, in remission. 

IC patients since we are all so unique and our IC affects our bodies just as uniquely, only you will know how much is too much (Pain, sleeplessness, drug side effects, etc).  If you choose to have your bladder removed or if you treat your IC with acupuncture it is ultimately your choice.  Only you know when it is time to move on and seek out a referral for an IC specialist, to change to the IC diet, or to leave a support group that does not feel like it is supporting you.  Only you know exactly how painful IC is for you and how long you've been on the path to find answers, help and support.  No one can determine that for you.  We can all support one another with IC (as patients or as friends, family members or doctors) but we do each other and ourselves an injustice if we belittle the treatment choices that someone else makes, and the amount of time they have suffered from it.   

So the inevitable happened: I got a bad bladder infection.  Although I had a successful flight with IC, I wasn't as successful in sticking to my fairly regimented regime (diet and schedule) for keeping my IC symptoms to a manageable level.  The water was different, the environment and humidity were different, and the biggest difference while on vacation: food.  While on vacation I did make a couple of special trips to Whole Foods but I was shocked to discover that this large chain store did not caryy one of my staple items: yeast free (sugar free) frozen bread!  On my second day of vacation a little nagging fear began to form that although my IC has improved greatly over the years I was not going to be able to maintain my diet while on vacation.  Would this upset the balance of my body, and the ultimate sacrificial lamb, my bladder?

Unfortunately, the answer was going to be yes, and I was going to develop a severe bladder infection a few weeks after my return home.  The bladder pain and discomfort sent me into a mini depression and I overdid it by taking too much oil of oregano and then ended up messing up the balance of my bowels.  Me.  Someone who has lived with IC for six years and knows EXACTLY what not to do in order to keep IC pain and symptoms to a minimum.  So I pulled out some of bladder's little helpers:

•  Relaxation CD's
• Started reading a good, humorous memoir to keep my mind off the pain
• Heated up a buckwheat pad and applied it to my bladder/vaginal area (warm, moist heat feels so good)
  
• douched with yin care twice a day
• took double doses of acidophilis to get my intestines on the right track
• Water, water and more water
• Rest

The bladder infection lasted for 5 days, but is now almost completely gone, and my spirit is slowly healing along with it.  I still don't regret my vacation and my first airplane trip since getting IC.  I am stronger than IC.

If you're like me, and you have (or had) bladder pain and the constant need to urinate, have you ever stopped to wonder if there is an emotional component?  So many times over the years I experienced the many insults, abuse, sadness, and feelings of anger over my situation.  But instead of crying, shouting, seeing a therapist, or journaling out these emotions, I tucked them deep inside of me.  I think my bladder finally decided that enough was enough and instead of holding it all in and allowing more of these damaging emotions to build up, it spoke up and said "Listen to this pain.  Deal with it right now!  Let it go and let if flow."  It took me five years to deal with all of the built-up emotions of my life.  My bladder is no longer angry and I work very hard to go with the flow of life.  So give it a try to see how releasing built up toxic emotions are playing a role in your IC pain and symptoms.

Countless IC articles/studies confirm what most of us with IC already know.  The secret thoughts locked up inside the depths of our being: thoughts of suicide.  An IC patient is 3-4 times more likely to commit suicide than a non-IC sufferer.  And those with severe pain and symptoms rank their quality of life below that of people undergoing kidney dialysis, or people with cancer. 

The statistics might seem high for anyone fortunate enough to not have to experience the extreme pain, discomfort, and complete change in quality of life that IC patients experience.  Before I had IC I had experienced migraine headaches and irritable bowel syndrome and I had always considered myself to be a positive person.  It was shocking to me how much IC hurt.  My bladder hurt.  My vagina hurt.  Sitting, walking, standing was excruciating.  During times of ovulation I would extreme pain and swelling of my labia which made wearing clothing unbearable.  Yet, in spite of all of the pain and swelling I still had a job to go to, grocery shopping to do, and a household to clean.  My quality of life suffered when I could no longer eat whatever I wanted.  My social life became non-existant.  Thoughts of suicide began to creep into my thoughts. 

If you are having these thoughts as an IC patient, know that these feelings are valid, and that you are not the only one to feel this way.  If you are a woman with IC, you might have experienced condescension from your male doctor about having IC, and he might have prescribed anti-depression medication to you before you were officially diagnosed with IC.  (Yes, I experienced this as well).  Please work with a pastor, spiritual advisor, and/or a doctor or licensed psychologist that you are comfortable with in order to have a support group that you can turn to whenever your thoughts turn to suicide.  Know that your severe pain and lowered quality of life are not your fault.  My thoughts and my heart go out to you if you are severely depressed or even suicidal. 

http://health.learninginfo.org/interstitial-cystitis-symptoms.htm