- Write everything down. And I mean everything...keep track of your food intake, your symptoms, your activities, when you take your medications, if you are under stress, what seems to help, and what seems to hurt. Put numbers to everything you can; include portion sizes, times of voids, volume of voids, etc. Writing down what you experience is one of the most powerful tools you can use to get a handle on your symptoms. You can even take these diaries to your doctor to get help decoding patterns. For sample food and symptom diaries check out my website. For more information on how writing things down can help you, read Keeping an Interstitial Cystitis Diet and Symptom Diary.
- Choose your foods from the IC Food List, Bladder Friendly column. I know it is tempting to rationalize that you are "special" and can eat foods others can't; but, I see it all the time. Someone is convinced that coffee (soda, tomatoes, alcohol, soy, etc…) doesn't bother her interstitial cystitis bladder, but then she complains that she is in pain all night. Don't eat foods that you know bother your bladder. Just don't do it. In fact, if you are writing down your food/beverage intake and symptoms, you will not be able to ignore the connection.
- Drink plenty of water. You may need to experiment with types of water, but honestly, the best is tap water that isn't high in chlorine. Most IC patients do well with filtered water they keep in the refrigerator. (Try a Brita filter pitcher.) When traveling, keep a mental list of brands that you know you can and cannot drink. (I cannot drink Dasani, but I do well with Evian or Figi water and can pretty much find those anywhere.) Timing your water intake can be important as well. One trick that I found works for me is to drink a full glass of water about an hour before I go to bed. This seems to dilute the urine. I might get up in an hour or two to use the bathroom, but after that, I can stay asleep all night. Some people find it easier to sip on water all day long.
- Get plenty of sleep. I know, I know…how can you get a good night's sleep if you are up and down all night long? Well, my answer is simply, "Do your best." Practice good bedtime habits. Get into a routine of stretching, taking deep breaths, turning off the electronics, using a white noise app on your phone, etc. Give yourself permission to rest during the day if you need to. Avoid over the counter sleep medications; rather, ask your doctor about drugs that might help. Some commonly used medications for IC include amitriptyline and hydroxyzine HCL which can also help patients sleep better. Read Are You Sick and Tired of Being Sick and Tired? for more ideas.
- Practice stress management. The mind-body connection is not hocus-pocus. It is real. (I love Candace Pert's book, Everything You Need to Know to Feel Go(o)d!) Your body reacts to stress by flooding your system with chemicals that can eat away at your bladder and cause interstitial cystitis flares. No, we can't avoid stress entirely, but you can short circuit the body's response to it. Take three deep breaths, walk around the block, get a massage, ask for a hug, meditate, or pray. (Check out Beaumont's Guided Imagery for Relaxation.) It even helps to talk about or write down whatever is bothering you. Many times when we put words to what we are feeling, we realize the situation is not as bad as we thought. For more information see "Can Stress Affect Your Bladder?"
- Take an Epsom salts bath. Many IC patients have spent years thinking they were having repeated urinary tract infections, so this suggestion is not easy for them. But baths can be helpful and healing for someone with interstitial cystitis. Use warm, not hot water. Add about a cup of Epsom salts to the water. Don't put anything else in the water other than a few drops of essential oils (try chamomile or lavender). BTW: Epsom salts are not the same as table salt. The magnesium and sulfates are released in the water and absorbed though the skin. It can even be soothing on tender vulva or scrotal tissues.
- Learn the fine art of minimizing what you miss, focusing instead on what you can do. I can't have strawberries, but I can eat my favorite, raspberries. I may not be able to ride a bike, but I love taking long walks. (See Staying Active with Interstitial Cystitis.) Working out compromises and "substitutions" for your romantic life can shift the emphasis from "I can't be intimate with my spouse," to "What kind of fun things CAN we do?"
- Find other IC patients to talk to. I can remember the exact day that I found the Interstitial Cystitis Network forum. That was also the day I began to heal. After feeling isolated for months, I finally found people who understood. I learned about new treatments and coping strategies that I use to this day. I still post there several times a week answering questions.
- Research your condition, but don't get obsessed. A good way to get a taste of what is happening in the world of interstitial cystitis research is to sign up for a newsletter from a reliable organization like ICN, ICA, or Confident Choices. You can also sign up for Google Alerts with a variety of search terms (I get notices for "interstitial cystitis," "interstitial cystitis diet," "IC Diet," "Julie Beyer," and "painful bladder.") The point is to keep up with the most recent research and treatment possibilities without going overboard sitting at the computer all day and night.
- Don't forget you have the rest of your life to live! Yes, it is important to talk to other IC patients and spend time on the computer researching your disease, but be deliberate about maintaining balance. If you are visiting the ICN forums, set a timer for 30 minutes or an hour. When the timer goes off, find something else to do. For every book you read about IC, read two on other topics. For every minute you spend chatting to other IC patients online, find something wonderful to do with your real life friends and family.
What are your must do coping strategies to feel better with IC? Did I miss anything?
Author, Speaker, Patient Advocate
For step by step guidance for creating your own personal interstitial cystitis meal plan, see: Confident Choices®: Customizing the Interstitial Cystitis Diet.
For some basic, family-style, IC bladder-friendly recipes, see: Confident Choices®: A Cookbook for Interstitial Cystitis and Overactive BladderFor health care workers: Interstitial Cystitis: A Guide for Nutrition Educators
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