5.30.2013

My IC story and maybe TMI


My Story 

August 10th 2011 is when i first started having pain like a bladder infection, so i would buy over the counter medications to help, it would help for a bit then it would flare up again, there was no indication when it was going to strike me…
Numerous times i went to the ER and complained of a pain in my bladder area, numerous times they told me its all in my head…. it would make me feel like i was crazy and not sure what to do, i would end up in pain again in a few days and go thru the same things over and over. 
I was starting to believe that i was going crazy and there was nothing wrong with me, UNTIL finally a doctor in the Emergency asked about IC and really thought i had this disease.. so we started with running tests, all the signs added up, the pain was just like described, that's when he suggested i go to see a colleague of his..Dr Strand, so i had seen Dr Strand previously to get an IUD, this appointment was about 6 months earlier then this issue started. 
Went to see Dr Strand, he wanted  to do a exploratory surgery to see if he could see anything that was causing this pain, he planned to have me in the ER and go from there. 
Day of surgery arrived and i arrived at the hospital, was already to get this over with and to find out where my pain was coming from. Hubby waited with me, i don't remember anything about going in the ER etc, and when i came out i was out of it, i can vaguely remember being wheeled to the car and home to rest.. 
Dr Strand did tell me that i had little pin holes in my bladder and that was causing my pain, he prescribed medications and sent me home, telling me to come back in 3 months… Thanks… not really helpful but anyway

I went to my family doctor a few days later and he had my results, neither of us were happy with Dr Strand, just putting me on medication that we didn't know would work or what the next steps for me would be. 
Both myself and my family doctor ( who was amazing) decided i needed a second opinion…
made sense to me and so we went on the look for one who i would like to talk to about this. 
This is when i found an angel of a doctor( she was so helpful, she listened, she gave advice and helped every where she could.

Dr Basjack was her name and she was a life saver for myself and my husband. 
She first and foremost listened to me tell my story, how i felt etc…
she then confirmed it was Interstitial Cystis,{

**Interstitial cystitis (IC) is a condition that results in recurring discomfort or pain in the bladder and the surrounding pelvic region. The symptoms vary from case to case and even in the same individual. People may experience mild discomfort, pressure, tenderness, or intense pain in the bladder and pelvic area. Symptoms may include an urgent need to urinate, a frequent need to urinate, or a combination of these symptoms. Pain may change in intensity as the bladder fills with urine or as it empties. Women’s symptoms often get worse during menstruation. They may sometimes experience pain during vaginal intercourse.}**
 and my journey began….
First thing she wanted to do was to stretch my bladder- that hurt and i wasn't able to it finish. It was horrible pain and after wards there was blood etc, then she wanted to do another test, it was almost like an allergy test- this one didn't hurt as much and we manage to finish this one, there was a catheter in place etc, i don't remember much about it. 
She then proceeded to give me a meal plan to follow very closely.. 
within the meal plan i had to cut out a lot of foods, foods that i love so much like:
Salsa
Oranges - anything Orange is a major trigger for me
Orange juice
all fruit except blueberries.
anything tomato based
nothing citrus or with acid
this cuts out a lot of things
caffeine
but i was willing to try this instead of being on a lot of medication. 

It was very hard to just not eat any of the above, i started reading labels and being very careful, but it didn't matter how careful i was, the flare ups were still happening. I was at the point where i was scared every day that i could have another flare up and if this happened i would have more pain then i could physically bear, there were times when i was having a flare up that my body would shake and shiver like cold chills, then my fever would start, and i would feel very very "off", nurses told me my blood pressure would be up by then as well. 

This is when the journey of finding the correct dosage of medication began- wow, quite the journey it was… just when you think you have the right amount, flare ups begin again and again.  
I was tried on different types of medication, such as : 

Elmiron- 4 per day
Elavil- 2 per day 
Tramacet- this was a life saver in the beginning
Hydrocortazin- 1 per day
Tramdol- 2 per day

It was always a hit or miss with the medications because of the pain that was worst each time it happened. 
My poor doctor i think she was tired of seeing a phone mesg from me, yet she always called back and most times got me in to see her the next day. 
Finally, I was having some relief with the dosage. 
I was taking all the above and was doing well for several months…

Brings me up to July when we moved to a new province and i had no family doctor here- 
my flare ups kept getting worst and worst, there was no relief and there was no one who really knew how to treat me, i called my doctor back home and there was nothing she could do because she can't see me and don't want to change any medications now- which makes sense…
but it is so hard to deal with this. 

Many trips to the ER lately and it takes  more and more to have the pain gone, like in the past few weeks, it took 6 dosages of pain medication {including Demerol, toradol and some other type that i don't know what it is because at this point, the pain was very bad…}
They also did a ultrasound the last time i was there and it showed up that i have a cyst on my ovary as well, thanks body, i didn't need this 

So this leaves me with needing a medication change and no doctor to do that for me, i am supposed to see a specialist soon and we will go from there, but in the mean time i am dealing with pain and don't know what to do. My last trip to the Er they got me in touch with the most amazing doctor i have ever had the privilege of knowing.. Dr Ferro... 
I got in to see him, and from the beginning he needed to have a "look around and try to stretch" but he was putting me to sleep, this surgery came April 30th, it was a easy, quick recovery etc, but 2 weeks later while at work, the pain hit me, wasn't as bad but it was def there... I was so crushed, so hurt and so disappointed that this was happening again...
I called him up and he told me to come in and visit with him.. we talked for a while, he then offered to try Bladder Instills, i would get 6 treatments and then i shouldn't have any flair ups for a long time... 
started those 3 weeks ago....
the first two i hardly had any pain at all in between the two, he first told me i wouldn't find any relief until after the 3rd treatment... 

I had my third treatment last friday, i have had 2 major flair ups this week, one of them i had to leave work and go to the ER for morphine treatment... 

Right now i am feeling so discouraged, asking God why these treatments are not working like they should be... 
IC is a painful yet hidden disease because no one can see it.. it is there and it very real. NO Matter what people may tell you
There is a lot of information out there, but here are some of my fav pages:

http://www.moarkic.com
http://kidney.niddk.nih.gov/kudiseases/pubs/interstitialcystitis/#cause
http://www.ic-network.com/whatisinterstitialcystitis/

Share this story with anyone you wish. 






6 comments

  1. I am so sorry to hear of your struggle with IC and also with the pain that you are dealing. Sending hopeful thoughts your way that you would feel better and also would feel encouraged.
    *gentle hugs*
    Rebecca
    www.caravansonnet.com

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  2. So sorry to hear about all your pain. I hope you can find the reason behind all of this and finally feel better.

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  3. Hi Terri Lynn, sorry to hear about the troubles you are having. You may want to take a look at this website: http://www.ic-oxalates.com Take care!

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  4. wow, what a story. A hope you find ease and comfort soon.

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  5. sorry you had to go thru that. I've lived 10 yrs now with no gallbladder and it's a daily struggle and well if I stuck to some kind of diet I probably wouldnt have the issues. So far not having soda's or cokes help alot as well as eating more fiber and fruits. hope your issue clears up

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  6. This is awful. Has anyone at any point told you that you could have a prolapsed bladder? That sounds more like it to me and the only reason I know is because I have it.

    The dropping of the bladder, sometimes also called a fallen bladder or referred to by the medical term cystocele, is a condition that affects women. A wall separates a woman's bladder and vagina, and when the wall becomes weak, the bladder can drop down into the vagina. Risk factors for a cystocele include women who have given birth or have had a hysterectomy. Aging is another risk factor for bladder dropping. Women who notice signs of this phenomenon are urged to discuss the issue with their doctors. Cystocele is measured in grades, with grade 1 being mild, grade 2 more serious and grade 3 advanced.

    Read more: http://www.livestrong.com/article/26766-signs-bladder-dropping/#ixzz2V1HjaNwy

    It comes and it goes and pain killers on't help. My doctor has told me that I have described my symptoms of this to a tee and that I'm probably at Stage 2. I have to go back to his sister who is a gynaecologist and she will explain the exercises that I will have to do. Sounds hopeful.

    Maybe you ought to suggest to someone that this is maybe what you have? Cystitis is horrid but medication helps which makes me suspect that what you have is not cystitis but rather what I have described here.

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