Exercise Can Manage Pain Effectively

It is hard to believe how much you can reduce your pain with yoga poses that target the pelvic region. You simply have to try it. We find that twenty minutes of gentle exercise can be equally as effective as taking pain killers such as Vicodin to reduce pain. That means, after twenty minutes of exercise, the pain is very significantly reduced. In our experience the best exercise to reduce pain is leg lifts. We also like "legs up the wall," in which you lie a comfortable distance from the wall with your legs elevated and allow the muscles in the pelvic region to relax.

To do leg lifts, simply lie flat on your back with your knees bent. Work with one leg at a time. Straighten your leg and hold it one inch off the floor, then lift your extended leg until both thighs are parallel. It's not necessary to lift your leg until it is pointing straight up. Lift and lower your leg ten to twenty times, then change to the other side. It's simple!

Other exercises we recommend: pelvic tilts and rocks are great. If you are familiar with yoga, you might know the Cat and Cow pose. Rolling in and out of Bridge pose is also wonderful. Walking is great. However, vigorous exercise can produce acid, so keep an eye on your time and your exertion and just do the amount that works for you. Since 80% of all IC patients have some form of pelvic floor muscle dysfunction, these excercises as well as Kegels should be done daily as one line of defense.

Dasani Water Warning

Dasani bottled water is now being sold, often exclusively, at movie theatres and airports. Dasani water lists potassium chloride as an ingredient added to improve the taste. Potassium chloride is also instilled into the bladder of patients to determine a diagnosis of IC. If a patient experiences pain with a potassium chloride instillation, a diagnosis of IC is given. The IC sisters strongly reccommend you avoid Dasani water and check the ingredients in bottled water before making a selection. www.nationalnews.com published an article stating that Dasani water contains cancer causing chemicals. Bobble is a portable water bottle with a filter attached that will filter the tap water you fill it with. The Bobble water bottle is sold at Target and will offer an alternative to potentially dangerous bottled waters while reducing plastic waste.

Potassium Chloride

Imagine being hurt by organic garbanzo beans! Canned goods are always a crap shoot. Fresh is always better. Goya's organic garbanzo beans are preserved with potassium chloride. When a pain incident followed their consumption we googled this chemical substance and found out two interesting things. Potassium chloride is actually used to diagnose interstitial cystitis. Water is introduced into the bladder, then a potassium chloride solution. If pain is experienced with potassium chloride, IC is diagnosed. Incidentally, potassium chloride is also the third drug administered in a lethal injection. We say avoid it.

Northern Toilet Paper

IC Sisters recommends that you avoid Northern toilet paper. We have had two incidents of serious pain that were made better by dropping Northern toilet paper. We do not know what kinds of chemicals they are using to bleach or soften their product, but whatever it is, it is irritating. Also on the topic of external sources of irritants, be mindful not to use harsh deodorant soaps. As bladder pain can transfer down the urethra it is often hard to detmine if the source of pain is stemming from the bladder or external causes. Using a mild soap and gentle tp can reduce urethral sensativity greatly.

IC is a broad term diagnosis and symptoms and effective treatments vary. On our Blog we seek to share our experiences and guide sufferers to comfort. We do not in any way intend to say that what we have found in our combined 25 years of experience will work for you or is the only way, only that we have found a reduction in symptoms based on our experience. Even though we share a genetic legacy, our symptoms and successes vary. We believe that diet and exercises are key. We believe you can find your way to a reduction in symptoms. We believe you can feel better than you do today.

Your Urologist

Sister 1 and Sister 2 have both gotten their best advice from a urologist who has expertise in IC. However, for both of us, this was after years of misdiagnosis. For this reason, we suggest that anyone suffering with bladder pain, urethra pain, or pelvic pain, especially if you have had a negative urine culture, waste no time. Get a referral to a urologist, and ask the urologist about their experience with IC. The Interstitial Cystitis Network has a nationwide listing of support providers of all kinds from dietitians to physical therapists to urologists. If you don't get the support you need try another provider, approaches and understanding vary but there is someone with information that can help you to reduce your symptoms. Diet is key to reducing your pain so we highly recommend seeing a dietitian to get your diet more IC friendly. If you have suffered from pelvic pain for some time, you might have given up, but there is much more help available now than there was just a few years ago, and it is growing all the time. Give it another try.

The Candida Link

I was first diagnosed by a friend whose daughter was in my son's cooperative preschool. I divulged my current symptoms through a litany of limitations, "Can't go to the zoo today, every step I take is painful." "Can't leave the house today, have to stay close to a bathroom." I was at my all time worst during those months and one day this friend said to me, "You have IC, you need to kill off the Candida." Because all I was getting was Vicodin from the medical community (And I don't knock it, but it wasn't the solution I was looking for) I put all my eggs in the Candida basket and did EXACTLY what she told me to do. I went off sugar and potatoes and all simple carbohydrates. No white rice, no pizza, no peanut butter, no fruit, no food of any kind with sugar or any variety of sugar listed in the ingredients. In addition to that, I was taking a supplement called Yeast Free and drinking Pau D' Arco tea. I also did a lot of research. Sugar is an inflamatory, in addition, sugar feeds Candida and Candida waste is acid. So when out of control, Candida is acidifying your system. It is also linked to bladder infections, which I was having frequently. I did the diet for two weeks and never felt better. The initial withdrawl from sugar was very difficult. I could stop eating any one food without noticing much, there would always be a substitute, but stopping sugar is such a struggle you have to respect the addiction and wonder why the body is so attached to it. I believe the body is attached to it because Candida has taken over the body. When the Candida is under control, the sugar cravings actually stop and the diet becomes easy. When I have flare ups with IC, sugar is the first thing I nix. It is always hard. I strongly recommend you find a naturopath or other health care professional who can test you for Candida and provide you with the tools you need to change your diet to reduce Candida overgrowth. It is imperative to have a lot of healthy food available at all times that you like and can eat. The recommended diet for IC is bland and starchy and when you reduce acid and starch you will need a lot of resources at hand to be successful. For example, if you are away from your refrigerator you might want to have some fresh veggies at hand as they are alkalizing to the system and can take the edge off an appetite without sending you to the more challenging snack food options such as chips and sugar foods.

Retention

I want to share a major victory I had with my IC in the area of retention. It has been six months since I had an episode of retention and I feel that this is my first sure deal victory since the onset of IC. Maybe it's too early to tell for sure, but I want to get the word out there because if you are suffering and running to the emergency room you need to know this. About seven months ago at the advice of my doctor I decided to give a urologist another chance at me. I had been suffering for a year or so with episodic retention about monthly. The urologist recommended amytriptaline and physical therapy for my IC and retention. Here's how that went.

The amytriptaline was supposed to reduce the pain messages to the brain that she claims are hyper vigilant and misfiring. After about two weeks I had to get off the medication due to an increased sensation of depression and anxiety. That medication is definitely not for me, though when I quit it, it seemed to me that it might have been causing a reduction in pain symptoms. In other words, my pain seemed to increase when I went off the amytriptaline. It's hard to be sure because my pain fluctuates anyway.

As for the physical therapy, I can't recommend it enough. Pelvic tension was found to be a big player in my IC symptoms, and my retention issues are, at least for the time being, gone. IC sisters will be developing a yoga video of helpful exercises, but in the meantime, consider seeing a physical therapist that specializes in Interstitial Cystitis.

There are many blogs where people share their experiences with TENS Units curing their IC pain, so other IC sufferers have also discovered a muscular-IC pain link. In the eighties I took Hytrin, a smooth muscle relaxer which also eased my symptoms some. There is quite a bit of evidence supporting the theory of a muscular component to IC pain, and from my own experience, I feel you must know that if you suffer from retention you should give physical therapy a try.

Baking Soda

Baking soda helps alkalize the body. Acids are in foods such as citrus fruits, tomatoes and chocolate. They are also hidden in processed foods as ascorbic acid, citric acid and others. Acids can also be found in supplements that contain vitamin C. All acids can trigger IC pain. If you are in pain, take baking soda according to the directions on the box. Even better, if you are going to eat food that you are uncertain about, take the baking soda preventatively. Diet is the first step to reducing IC pain but learning what foods are safe for you can prove to be a challenge. Baking soda is the first step to recovering from excess acid.

Super Hydrate

Drinking a lot of water may not sound like tons of fun with our bladder symptoms. We find we feel better, tho, so the IC sisters are both big water drinkers. You never find us away from home without our stainless steel water bottles. Try to drink half your weight in ounces of water per day. For example, Sister 1 weighs 128 pounds (with shoes on) and tries to drink 64 ounces of water per day.

Drinking water helps dilute those acids we consume in foods. It also helps to dilute acids produced within the body.

Start your day with 2 glasses of water, before consuming any other foods or liquids.

Here are some indicators of under hydration: yellow urine (pee clear!) dry skin or lips, headaches, constipation... the list goes on. Try this, pinch the skin on a knuckle on the back of your hand and after you let go if the skin does not immediately lay back down you are dehydrated. Drink up! Use your pee clear test to tell you how you are doing.

Healthy Snack Warning

A warning about "Healthy Food." Be aware that many healthy foods are healthy because of their lack of processed sugar but that means sugar substitutes are at hand and they can be quite a challenge for IC sufferers. We have found trouble at foot with the ingestion of many sugar substitutes such as evaporated cane juice, any grape or raisin concentrate sweetener and chemically derived artificial sweeteners. If you are relatively sure you don't have an overgrowth of candida aggravating your symptoms, you would be better off to consume small amounts of sugar than to ingest some of these substitute sweeteners.

Heat For the Pelvis

Sister 2 has been getting an immediate pain reduction from taking hot baths. I feel like the nerves that are sending my brain pain signals get put to work sending my brain temperature signals. A very welcome change! Warm, warm, warm...

Sister 1 uses a heating pad at night to relax muscles in the pelvic region. When we are in pain, we hold our bodies differently and tend to tense muscles in an effort to protect what we perceive as an injured area. This often unconscious response sets up more healing challenges, and chronic muscle tension has for sure complicated my IC. I have been working with a physical therapist on the pelvic muscles and believe the work has cured me of the retention issues I was having. I have not had a retention episode in several months. The muscular component is another reason why warmth, exercise, and relaxation help.

Restaurant Food

What in the world do restaurants put in their food? I just experienced a pain spike to 7 after eating at a HOSPITAL cafeteria. Sister 1 told me that buffets are famous for making their food shine with ascorbic acid. Another foe, msg is frequently used to preserve buffet food. I think my chicken and potatoes must have had ascorbic acid on them. Pounded down 5 glasses of water, drank baking soda water. Took about an hour and a half, but I am feeling fine again. When you are in a flare up it is important to know what is going into your body. Avoid dining out until you are back in control of your symptoms. Love, Sister 2.

Recipe for Sweet and Delicious Oatmeal

Serving size: 1

1 C Water
dash Salt
1/2 C Quaker Oats Old-Fashioned Oatmeal
Milk
Butter
100% Pure Maple Syrup

Bring water and salt to a boil. Pour in oatmeal, and reduce heat. Cook until water is absorbed. Pour oatmeal into a bowl. Melt a pat of butter on top. Add milk and maple syrup to taste. Enjoy!

Buffets and Other Food on Display

A fun-filled trip to Las Vegas turned painful one night, and I couldn't figure out what I had done wrong. It scares me when there seems to be no reason for my pain. I imagine myself feeling that bad with no control over it, and I can't imagine living that way. However, when I told Sister 1 what I had done that day, she immediately zeroed in on the fact that we had eaten at one of Las Vegas's famous all-you-can-eat buffets.

Ascorbic acid is commonly used on display foods to preserve their fresh appearance. So, food that we typically think of as healthy can be very unhealthy, such as salad bars and fish from the display case. Last night I ate black olives, "a bladder friendly food" according to the ICN diet. Pain spiked after my first pee after the olives. This morning, "duh...they were on display!!!" Well, at least I figured it out.

If you had a pain spike that you could not identify a cause for, tell us about it in the Get Answers section at the bottom of the blog. We will try to help you identify a trigger, so you can avoid it in the future.

Nitrites

A carefully planned Christmas breakfast goes wrong. After much thought about a low sugar, low acid way to celebrate, the following menu was chosen: bagels, cream cheese, and lox. So, why did I need a Vicodin three hours later? My first pee after eating the wrong thing always tells me I am in trouble. I looked at the ingredients list on the lox, and started some internet research. Nitrites looked like the culprit. I consulted with Sister 1, and she confirmed that preserved meat is a big no-no. Okay. Learned that one the hard way. Love, Sister 2.

Current Research

My current efforts to feel normal have me back attempting the Candida diet and reading The PH Miracle by Robert O. Young, PhD and Shelley Redford Young. The premise of the book is that our diet creates an acidic environment in our bodies which contributes to a host of ailments which he sources back to an overgrowth of toxic microforms such as Candida. So the book fits into my experience with IC in that it cites sugar as the enemy. I will keep you posted as to how the diet works for my symptoms as I get further along with it. If you are at all interested in the Candida topic I can tell you it is a great resource. The complication comes when you try to add new parameters to an already severely restricted diet. We will post recipes that address both IC and Candida as we discover them!

Recipe for Fried Rice

Serving Size: About 4


1C whole grain brown rice, cooked

2T canola oil
3/4 C mixed veggies, fresh or frozen
1 or 2 eggs

Cook one cup of whole grain brown rice according to the instructions on the package.

Heat 2T hot oil in frying pan over med-high heat. Add the rice.

Add vegetables cut to bite size pieces. Leafy green veggies such as spinach and kale are a great source of vitamin B which is less tolerable to most IC bladders in supplement form. Green onion can be tollerated easier than white and garlic is safe and flavorful.

Once veggies are softened, clear a center in the pan and add one or two eggs. Stir the eggs in the center of the rice and veggie mixture until they begin to coagulate then mix the entire pan together. Stir until eggs are thoroughly cooked. Salt and pepper to taste. Serve hot.

Tight Pants

Oh, how I hate to say it. Pressure on my pelvis makes a big difference in how I feel. I love to wear flattering clothes. Is this why the muumuu was invented? Maybe it wasn't such a bad idea after all.

Prelief

Sister 1 and Sister 2 have both had an evolving relationship with the product Prelief. We have read the package directions which suggest 2 tablets taken before an acidic meal. It also suggests that more can be taken if needed. Sister 1 and Sister 2 both use more. Sister 1 typically uses 3 Prelief tablets. Sister 2 typically uses 2 at the beginning of a moderately worrisome meal, but adds 2 more in the middle of a more acidic food, such as a meal that has tomato as an ingredient or with a reduced acid coffee.

Here is the Prelief advice Sister 2 got from her urogynecologist Dr. Allan Klapper at New York Downtown Hospital. He suggested taking Prelief daily with the same meal every day. For example, take Prelief with dinner every evening. He also suggested continuing to take additional Prelief with other meals that might be too acidic. His suggestion to take Prelief on a daily basis at the same time every day is quite different from the packaging instructions, so we thought it was worth mentioning. It seems like Prelief is very helpful.