Saturday, September 16, 2017

Living with IC--Interstitial Cystitis

I love the "On This Day"  feature on Facebook.  I love looking back to the funny things the kids have said or done that I had forgotten.  Today this memory popped up:  

6 years ago today:
"About to get ready for an outpatient diagnostic surgery under general anesthesia. Prayers appreciated!"


My pregnancy with Michael was hard.  We almost lost him at around 12 weeks.  At my 6 week checkup I was diagnosed with high blood pressure.  It took months on blood pressure medication for my blood pressure to finally regulate itself.  Around that same time I started having symptoms that felt like a bad UTI or bladder infection.  I went to two different doctors before doing some research online to find out what was going on with me.  I happened upon a website that described what was happening to me---IC or Interstitial Cystitis.  I didn't even know how to pronounce it!  

What is IC?

"Interstitial Cystitis is a chronic bladder condition affecting 4 to 12 million people in the US. We often say that interstitial cystitis is as hard to say as it is to live with. Trouble saying interstitial cystitis? It is also called IC, painful bladder syndrome (PBS), bladder pain syndrome (BPS), and chronic pelvic pain (CPP)."  --Interstitial Cystitis Association 

I decided to try a different urology practice and happened upon a doctor that specialized in IC.  I made an appointment right away.   He thought from my symptoms that I should do the diagnostic test to confirm IC--a cystoscopy with hydrodistention.  That happened 6 years ago today.  The test also has therapeutic benefits and is used quite frequently as a treatment option for those with IC.  Unfortunately, it made my symptoms worse for at least 1 to 3 weeks afterwards.  So much so that I decided unless I got extremely worse, I wouldn't have the procedure done again.  After the procedure, the doctor confirmed that I had Hunner's ulcers (patches) which is a clear indication of IC.  

Sometimes, the cystoscopy with hydrodistention will put IC patients into "remission".  Not true in my  case.  So, I had regular appointments with the urologist, who suggested more than once that I go on a new drug that was proving to be successful in some IC patients, Elmiron.  Once I read the side effects, I knew I would not be starting on this treatment.  I asked him if I could just put myself in remission through lifestyle changes and he reluctantly admitted that it was a "possibility."  He told me about an over-the-counter dietary supplement I could take if I was eating something I knew could bother me called Prelief.

So using the IC website, I decided I would try lifestyle changes before I would do any more procedures or take medication.  At first, everything bothered me.  So, I made drastic changes, but over the years I've been able mostly successful in using lifestyle changes to regulate my symptoms.  I still have BAD days especially around my monthly menstrual cycle or hormonal changes.  No one except my family notices, but it still doesn't mean that a person doesn't struggle with a condition just because it's private.  

As things got better, I have been able to relax some of the drastic changes I made in the beginning. I followed this food list as I identified my triggers.  

The triggers that I still avoid:  caffeine, carbonated drinks, spicy foods, highly acidic foods, not drinking enough water, bicycle riding or jogging.  Triggers that I limit:  fried foods, chocolate (not as much as I should),  citrus juices, tomato sauce, high salt or foods with MSG and STRESS.  I have found that with me it's not just one trigger, but it's when I compound lots of triggers in a short amount of time.  

There are triggers that I cannot control like hormonal changes, which I have found are probably the biggest culprit for me at this point.    Fortunately, I have a well-educated gynecologist who understands my IC and doesn't try to treat me for a UTI every time I give a urine sample.  

What worked for me: 

1.  Doing my research! 

Websites I have found helpful:


2.  Finding  a doctor that supported my decisions about treatment.  

Although I'm very thankful for the knowledge of the urologist that diagnosed my IC, I decided not to maintain a relationship with his office because it was basically not needed.  I don't need to check in with a doctor to tell me I'm managing fine with my lifestyle changes.  I keep my annual appointment with my gynecologist and she is up-to-date with my treatment decisions. 

3.  Not disregarding lifestyle changes as a treatment option.

If your doctor gives you an option to treat your symptoms with lifestyle or dietary changes, at least try it!  

4.  Realizing there will be good days and bad days.

Even though my IC is manageable, I still have bad days.  This week I've had two mornings where I have not felt well at all.  But I have good days as well.  True, there are things I just can't do--I can't be without access to a bathroom for more than two hours usually.  On a bad day it's much shorter!   That leaves me out of long hikes or kayaking trips on the lake, but we cope and do shorter hikes in times where I'm feeling pretty good.  I have a good life and don't feel sorry for myself on the things I have to miss out on. 

Disclaimer: I am not a medical professional, just speaking from my own personal experiences.   I realize that my IC is a milder form that some people have, so remember to always check with your doctor before taking any advice online or elsewhere.  


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