Updates

Well, it has been a while since I posted.  I have been seeing a lot of Physical Therapist and still seeing a lot of doctors.  So, not only do I have IC and PFD, I also have back problems.  I found a new doctor for my IC and he is awesome.  It is sad that I had to go through probably 20 doctors to find the right one.  Also one that deals with IC specifically.  A lot of doctors here don't know what IC is and that is sad being this is supposed to be the best place for hospitals.  Dr. Leong in St. Louis is awesome.  He had tried everything as far as Toviaz (allergic, rare case). So far what is working is Prelief,  and Colon Health.  I am being careful on what I eat.  Plus, my boyfriend just found out he has Celiac Disease so we really have to watch out what we eat.

My bladder has been doing good, not better but good.  Dr. Leong refereed me to a PFD doctor here in Columbia which I have seen before but this time for Myofascial Pain.  Saw Julie Star and she refereed me to Deb Bolten.  I have to say, she is the BEST.  Not like those other PT that work you.  Every time I saw PT, it really didn't do anything but strengthen my muscle but as far as pain goes in my back, just made it worse.  Deb Bolten worked on me for 4 weeks.  I have to tell you, for anyone with IC and PFD/Myofascial Pain, I would refer her.

I am still seeing a Pain Specialist.  Dr. Varghese is really good.  Last year he did Steroid Injection, Facet Injection and Nerve Block.  All done on L5, L4, L3, Hip and SI Joint.  Did Steroid Injection again this year and maxed out.  He did the nerve block last month and now I am on the Facet Injection.  This time, my back is doing better so he is paying attention to S1, S2, S3, and S4.  Had to be active for 2 hours.  Next month he is doing the 4 hour one.  I am hoping this really works.  I like not being in pain for a month.  Would be great if it lasted longer.

I am also seeing what irritates my back to hurt.  Looks like anything that required strenuous movement like Bowling, Gardening.  I am on a league this year due to my doctor does want me to stay active and at least exercise but I might have to quit this completely.  I took a break to see if I was hurting.  Not as bad.  When I do bowl, I hurt more and taking more medicine.  So, I have decided that after this bowling league is over, I will quit :(.  I also agree with Dr. Varghese, if bowling is making my pain worse, then I should stop or take a break and find another activity.  I will see if gardening hurts it next year but we will see.

I have a new project that  I am doing and does not hurt at all.  I am doing paper crafts and card making. 

So, this is what has been going on since the last time I blogged.

Tina Johnson

There are a lot of people with IC who have other problems as well like one is Fibromyalgia/Chronic Fatigue Syndrome and others.  Here is what I have also been diagnosed with IC.  

• Nocturia - Nocturia is a condition in which you wake up during the night because you have to urinate. 
• Urinary Frequency - A person with urinary frequency urinates more often than usual.
• Female Stress Incontinence - is any involuntary leakage of urine. 
• Dyspareunia - is painful sexual intercourse for women. The pain can be in the genital area or deep inside the pelvis. The pain is often described as sharp, burning or similar to menstrual cramps. It can have many causes.
• Myofascial Pain - also known as chronic myofascial pain (CMP), is a syndrome characterized by chronic pain caused by multiple trigger points and fascial constrictions. Among the symptoms are referred pain, limited range of motion, and sleep disturbance.
• Stress/depression.
• Constipation/IBS.

There are diets out there that we have to follow and depending on the person eats, depends on their IC.  I have a list of what is allowable and what is not.
Fruits:
What we can have are Blueberries, melons (except Cantaloupe) and pears.  All other fruit are not allowed.
Vegetables:
Homegrown tomatoes and some vegetables.  Store-bought tomatoes, onions, tofu, soybeans, lima beans and fava beans aren't allowed.
Milk/Dairy:
Milk, American Cheese, cottage cheese, frozen yogurt, and white chocolate.  Yogurt, sour cream, aged cheeses and chocolate aren't allowed.
Carbohydrates/Grains:
Pasta, rice, potatoes and some bread.  Rye and sourdough breads aren't allowed.
Meats/Fish:
Poultry, fish and some meats.  Aged, canned, cured, processed chicken livers, corned beef; and meats that contain nitrates or nitrites.
Nuts:
Almonds, cashews and pine nuts.  Most other nuts aren't allowed.
Beverages:
Bottled or spring water; decaffeinated, acid-free coffee or tea; some herbal teas; flat soda.  Alcoholic beverages, including beer, wine, carbonated drinks; coffee, tea, fruit juices especially citrus and cranberry aren't allowed.
Seasonings:
Garlic and some other seasonings.  Mayonnaise, Miso, soy sauce, salad dressing, vinegar and the most important SPICY FOODS aren't allowed.

These are some of the stuff that I keep an eye on or a I test it out.  There are others out there that can eat all of these and not have a problem, it just all depends on the person and their symptoms.  I can drink a small wine but if I go overboard, you bet your butt I will be out for a week or so.  I remember I drank too much and was pretty much out in pain and in bed for almost 2 weeks.  I also take prelief, colon health and I am on so many medicine I can't keep up.  The one I am trying to stop is Percocet.  So most of the medicine I take (Synthyroid, Percocet, Lunesta and other), I can't drink and then chose not too.  The foods, like I said just depends on the person.  I know for a fact that I can't do spicy, I regret it later.  Onion's don't bother me much but then I don't eat a whole lot of them either.  You just have to try and test what you can handle.

So diet and exercise are very important.  I guess some good exercise's are walking, yoga, low impact aerobic, pilates for IC and Tai Chi (which I love).  Also learning to lower your stress helps.  I am the one that is bad here, to quit smoking is supposed to be the thing for you including with IC.  I am going too, I just have to set a date.  Clothing is also important.  You don't want to wear too tight of jeans that will make you uncomfortable and hurt.  I wear lose clothing.  Also make sure you have bathroom access.  You never know when you have to go.  It can come when you least expect it.

Some might ask what is Interstitial Cystitis? IC is a long-term (chronic) inflammation of the bladder wall which is known as painful bladder syndrome.  The symptoms varies with each people with IC:  Pelvic Pain, pain during intercourse, Urinary discomfort, Urinary frequency (some people with IC tend to go 60 times a day in a severe case) and Urinary Urgency.   I was diagnosed with this symptom in 2009 but I know I had it for a long time.  A lot of doctors kept telling me I had a bladder infection or UTI.  I found out later on, there is a difference.  Bladder infection or UTI usually hurts when you go but with IC, or to me, does not hurt, it only hurts when I am holding it in.  Once I go, I feel so much better.  The pain you feel ranges from milk tenderness to intense agonizing pain, almost like thousands of needles are jabbing you. As you can see, IC can be somewhat difficult to diagnosed because there are UTI, Bladder Infection and now there are overactive bladder and chronic prostatitis.  There is so much out there.  Anyone can get it, male, female, age doesn't matter.

People can get diagnosed by talking to your doctor, they will do a hydrodistention with cystoscopy and let me tell you, it hurts when you wake up.  This will allow the doctor to see small, bleeding wounds also known as petechial hemorrhages.  I guess when mine was done, I was rated at level 4 hemorrhaging.  Before diagnosing IC, your doctor will need to rule out other possible causes of your symptoms. Tests include:

• Bladder biopsy
• Cystoscopy (endoscopy of bladder)
• Urine analysis & culture
• Urine cytology (for detecting cancer and inflammatory diseases in the urinary tract)
• Video urodynamics (which shows how much urine it takes for you to feel the need to urinate)

So far, there is no cure and there is no known reason what causes IC.  Researchers are trying to find ways to make IC better but it is also the patient's job to watch what they eat.  I will post that later.  There are treatments out there like for one:  Bladder Distention, Bladder Instillation and there are drugs people with IC can take.  I have tried Instillation, DMSO (Dimethyl Sulfoxide), Electrical Nerve Stimulation, pain medicine like Percocet, Elmiron,  and so far nothing worked.  I see a new doctor and he suggesting I take Toviaz.  Also these treatments

• Bladder training (relaxation techniques to train the bladder to go only at specific times)
• Medicines placed directly into the bladder
• Physical therapy and biofeedback (aimed at relieving muscle spasms)
• Surgery

We do get flares.  Flares to me come unexpected and omg do they hurt.  A flare is a sudden and dramatic worsening of their bladder symptoms. Lasting from hours to weeks, IC flares can be unpredictable, disruptive.  Depending upon the triggering event, an IC patient may experience a variety of symptoms during their flare. 

• Frequency: During flares, patients can experience urinary frequency, especially at night. Mild IC patients may urinate 11 or more times in a 24-hour period, while more severe IC patients urinate 40 or more times a day.
• Urgency: Some IC patients struggle with a sudden need to urinate and/or a sensation of constant pressure to urinate.
• 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. 

For many of us, 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.