Diagnosis Aftermath!

So, you've just been diagnosed with Interstitial Cystitis...

What do you do now?



Well, if you're like me, you might just break down in tears! I cried at the drop of a hat, or pin, or whatever, for about a week. My husband held me each night, while I cried myself to sleep. I think it's ok to cry. In a way I saw myself mourning for the loss of my previous life. My diet, my travel, even the way I was going to go to the movies had changed. Sometimes you have to mourn to move on.

It may feel like the end of the world, but it really isn't! I promise! It's been almost a year since I was diagnosed & I can truly look back & find positive things throughout the year.

Take a deep breath! First of all, it's not the end of the world. IC is not fatal, therefore there is certainly the blessing that you aren't leaving this world. Yes, you have to live with IC, possibly for the rest of your life, but I promise you that it can work!

First things first, you're going to have to change your diet. I know that the IC diet guidelines seem rather strict, but in the end, you'll find what works for you & what doesn't. Here are two good website links to help you begin: ICA Food List and Elimination Diet Guidelines

Chocolate seems to be a BIG leap to get over for a lot of women. Just because you are told to eliminate chocolate, doesn't mean you won't EVER get to eat it again! It might be something you can only eat occasionally, or in my case, I can only have it when I'm not flaring... however, I do have it on "normal" days, almost every day, in some form or another. I've learned to be very discerning about my chocolate choices, since I can only have it in small amounts. My favorite is any high quality, preservative free organic form. The darker, the better.

Being in control of your diet also means you will have to learn to refuse food people offer to you. This can also be a difficult obstacle for some. I've found that just a mild "No thanks, but thanks for offering!" usually works best. You will have to set boundaries on how much information you wish to share with others, as well. Nosy people will often want to know exactly why you don't want that gooey delicious chocolate brownie they are offering you! You also may benefit from practicing refusing food with a friend or your spouse. (Sounds weird, but it does work!)

Whether you've decided to try medication (such as Elmiron) or do a natural approach (like aloe vera) your bladder will truly benefit from you taking your medications daily, as prescribed. Find a neat little pill case so you can carry your medicines/supplements around with you. (If you take several or even more, like me, you might benefit from a nifty "old lady" pill carrier, which will help you keep stuff sorted.)

I've also found that keeping a medication list, complete with descriptions of the various pills, and also descriptions of main side effects, is helpful. Plus you can give it to doctors or pharmacists that wish to know what all you are taking. Makes life just that much easier!

Be sure to do follow up visits with your doctor/nurse practitioner, and especially let them know if you have continuing pain and/or new symptoms. Interstitial Cystitis is considered an "overlapping condition", and by having it you may raise your possibilities of having other medical conditions, such as Irritable Bowl Syndrome or Vulvodynia. For more information, click here.

Another big first is water. You simply MUST keep hydrated when you have IC. I know the temptation is to avoid water, because then you'll have to use the restroom less often, but by concentrating your urine you may make the pain much worse! The type of water you drink might often affect you too. Some IC patients find that filtered tap water is just fine for them, others (like me) have to have bottled water. I mostly drink distilled or purified water. You will have to tinker around to find how much works for you daily. Keep in mind that your urine shouldn't be dark, and that is a sign you need to drink more. Running to the bathroom every 20 minutes also isn't so great, so you have to find that delicate balance- something that works for YOU!

Two other things to consider are stress relief & exercise. I realize that right now you probably aren't thinking that either sounds do-able, but with a little planning and personal strength, you may find you can't live without them! My personal strategies for stress relief are prayer, meditation and yoga. I also use yoga for exercise & have found some of the poses work really well for stretching the pelvic muscles. For exercise, my go-to is walking outdoors. When I first started I could barely make a half mile stretch... and sometimes I could only walk around the block because I needed to be near the bathroom! However, with time & working medication strategies, I've been able to gradually up my mileage to 2-3 miles per day, plus I can sometimes even add in a little jogging, when I'm feeling really good! I also do a light kettle-bell routine, on the days that I'm feeling well & need a little extra workout.

My last piece of advice for you is to find at least one person to be your support! My husband is my main support person and I adore him for it. You need at least one person you can complain to, lean on & even gross out every once in a while. It helps if you can find someone who also has IC. Ask your doctor if they have an IC support group or know of someone that you might be able to talk with. You can also connect with other IC patients online. There are various message boards for IC patients, and there are several facebook groups as well. If you can't find anything, you might think about starting your own group of some sort. There are certainly benefits to connecting with others who know what it is like to live with Interstitial Cystitis.

Now, take another deep breath! You can do this! You can live life, and you can do it with IC! I've been where you've been, and it isn't just a black hole of doom. Keep your chin up and look for the brighter things in life!