Monday, April 10, 2017

No Cure!

For those that follow me on social media, via Facebook, Twitter or Instagram, you already know most of my story, but for those that simply follow me via my blog, this may be new to you. When I became interested in blogging it was to keep an online journal of what was going on in my life in hopes I could look back on it and be encouraged or to see answers to prayers in what was going on in my life and perhaps find common ground with others in the process. I am going back to this because of what I am now being diagnosed with and it's called "Interstitial Cystitis" or IC for short.

What is it? Basically summed up in a nutshell is all the symptoms of your traditional Urinary Tract Infection or Bladder Infection, minus the infection part. The problem being is that treatment is different for everyone because the DNA make up and what you eat and how your body processes that is different. From a science point of view it is cracks in the bladder that allow urine to irritate the bladder wall and thus cause the symptoms of what duplicated a UTI. There is no infection.

I've been at it trying to figure out what has been going on since February 6, 2017. For almost 4 months despite all the negative urine cultures they ran on me, the doctors kept thinking it was a UTI or Bladder Infection, so I was given 4 different types of antibiotics, from Nitrofurtin, to Cipro, to Bactrim to Augmentin. Nothing worked. And it shouldn't have because there was no infection, only pain and urgency to urinate all the time. Bathrooms were my newest friends.

I did find some relief taking Pyridium, the stuff that makes your urine bright orange and stains everything. But eventually that stopped helping as much as first. So I tried everything in my medicine cabinet, researching the internet for all kinds of "what could it be?" advice and while they all pointed to a number of things, it would now begin a process of working with both my primary doctor and my urologist to pin point the cause for the next month going from ultrasounds, CT Scans and more eliminating kidney and bladder stones, and everything under the sun all while prescribing me meds for over active bladder in any attempt to get my symptoms under control. These haven't worked because it wasn't over active bladder and all they did was make things worse.

Now it has come up with IC, which unfortunately has no cure. My biggest challenge on any day is not to get depressed by it because it has drastically altered my life. Pain is also ever present, it never goes away. I found that by eliminating all foods that are spicy, sour, citrus, coffee, chocolate, garlic, onions and the like, I am more comfortable. The best days are a pain scale of about 3. I am taking marshmallow root capsules because upon research, most IC sufferers found relief by taking them as well as Elavil 25 mg that my urologist has me taking at night. This is how I went from a 10 on the pain scale to now finding relief in a 3. I am praying for 0, but for now I will take what I can get.

At first, I hated this diagnosis because of what this would mean for me, and also my family. Trips now have to have restroom access at all times. You just never know when its time. It is also figuring out which foods trigger pain after eating them, and adding them to the no eat list. The biggest challenge has been trying to figure out how to eliminate all the prescription meds and go completely natural, but for now it is still one big science experiment. Along the way I have been encouraged by those who also have it and have been sharing what works for them and how things have helped. My quality of life right now is pretty depressing since there is nothing anyone can do to help me. It remains a journey I take alone right now, but I pray to Jesus every day that today, just today will be a better day.

I would love to hear from you if you also suffer from IC, and please email me at and I'd love to hear you story and what has worked for you. Please keep me in your prayers for a complete healing and at least the strength to get through one day at a time, and to keep depression behind me.


Mari said...

I'm sorry you are dealing with this Kat. I don't have any experience with it, but will be praying for relief of the symptoms and praying against depression,

LV said...

Been wondering about you. Missed your blog, but understand now. So very sorry you are having so many issues. Trust things improve real soon.Take care and it will get better.

Debby@Just Breathe said...

Keeping you in my prayers. ((Hugs))