Wednesday, February 29, 2012

A Diagnosis

Sorry to keep you waiting friends. Things have been busy.  
Andrew went to a new urologist last Thursday.  The urologist said to Andrew, “It’s not cancer, but it’s not good” before “diagnosing” Andrew with Interstitial Cystitis.  Also known as IC, and what I will be calling it.   It is a complex, chronic bladder disorder.  It is permanent and there is no cure.  The cause is unknown but this particular Dr looked at Andrew’s history and thinks his severe dehydration from when he was sick vomiting and such may have caused the permanent damage to his bladder.  IC is more common in woman,  and out of all the people with the illness, about 10% are men.
Interstitial cystitis (IC), also known as bladder pain syndrome, painful bladder syndrome or hypersensitive bladder syndrome. The symptoms can vary greatly between individuals and even for the same person throughout the month, including an urgent need to urinate, a frequent need to urinate  and, for some, pressure and/or pelvic pain. Pain levels can range from mild tenderness to intense, agonizing pain. Andrew can always feel it but sometimes the flares are really bad and other times the pain is very manageable.  His pain was not tolerable for a few weeks, including when he was in the hospital. Pain occurring after urination may relate to pelvic floor tension and/or muscle spasms. Pain may also radiate to the lower back, upper legs, vulva and penis.  During flares, patients may also experience the “IC Belly,” a sudden and random swelling of the lower abdomen which Andrew has had. He couldn't even button his pants even though he lost 20 pounds.
Some of the info above is from here

Andrew doesn’t think this is related, but the VERY first time I met Andrew he had to go to the bathroom suddenly. It was at his brother’s wedding and I saw him run out of the function room during his dad’s LONG toast.  I later found out he went to use the toilet.  Then, fast forward 9 moths and I was on my first date with Andrew. We had each had a couple beers and were talking and all of a sudden he said “I need to go to the toilet” (By the way, saying Going to the toilet in NZ is normal…whereas here we would say rest room or bathroom).  I thought it was weird he said toilet instead, but I also thought it was weird he literally jumped up and ran to the bathroom.  IN the next few weeks I kept joking about that, and how it wasn’t normal to have to go so suddenly. I actually straight up said "I think you have bladder issues. Were you a bed wetter?" lol- ya, I was barely dating him! I sure know the way to get a guy to like me!
 He told me it only happens when he drinks alcohol.  IT has been almost 7 years since that first date, and I can say that Is true.  When he drinks, he has to go urgently.  It is the reason he doesn’t like to drink at big crowded events.  Here is another fact- Andrew doesn’t really drink water. IT drives me CRAZY! I drink TONS of water all day. He drinks very little.  I think he is actually dehydrated a lot more than we know of.   SO- maybe the urgency to go isn’t related to alcohol but just the fact that he never sits down and drinks 3 glasses of water in a row like he would beers…or more. Its more the AMOUNT of fluids that make him go suddenly, not WHAT the liquids are.

Anyway, that is a theory of mine- that maybe this has been coming for a long time…but he doesn’t agree with me.
The problem now,  is Finding a treatment plan that works.  The treatments vary for people.  So far, the doctor gave him scripts for MORE pain medicines, anti-inflammatory pills and anti-depressants. He really hasn’t taken any meds yet,  because he doesn’t like the side effects listed.   Another thing the dr mentioned,  and we have researched it, is elimination diets. Eliminating acidic foods that can upset the bladder more may help with the pain. SO, basically lots of Andrew’s favorite things- coffee, chocolate and lots of fruits should be cut out.  He is already a very skinny guy- so taking away his favorite things is tough, but better than pain. 
From what we understand, the only way to confirm this diagnosis is by doing a biopsy of his bladder, BUT a biopsy can also REALLY irritate the bladder more…so it’s not something to rush into. 

Another theory I have...The dr said this may have been made worse or even "caused" (I dont know exact wording because I was not there and I am going by what Andrew told me) by Andrew's severe hydration when sick. Here is the thing- Andrew has been dehydrated a lot in his life. Well, a lot by my standards. He doesn't drink a lot of water ever, and he has been dehydrated from illness before. I wonder if each time he has been dehydrated, it has added to this...and now we have reached the breaking point? From what I understand, the bladder wall is very inflamed from irritation...almost like a burn.

Andrew left the dr Thursday and went home to start researching.  He found  a lot of the bad case scenarios. Scary stats like 90% of people with IC can’t hold a job. Or that 50% of people with IC lose their marriages. It is hard because it’s not something people can see and it’s not common, so people don’t understand it.  Andrew was very emotional about it.  Thursday and Friday were just hard. At one point Andrew said he wanted to move back to NZ so he could be around people who love him.  I admit, I wasn’t being the best at support system,  because I was still processing and learning too.

I am just so happy Andrew has Anika to make him smile and to keep him positive.  He is facing a really poor quality of life right now, and that is very upsetting! I get that.
On Friday morning, it was rough in our house as I was trying to get out the door. I could sense that Andrew was crying after a discussion about him being sick...he had also gotten really upset with me because I don’t seem to care. He was basically telling me I was not giving him the support he needed. When I realized how upset he was, I had him sit down next to me. The second I saw a tear drip down his face, I started to cry. It is so painful to see. We were both emotional and he was upset…THEN, Anika walked over And just started DANCING, Laughing and clapping…looking at us with her huge grin and giggles. She was trying to get us to laugh…and we both did. Shakin her booty! The best part- SHE usually will NEVER clap for me. She claps with her little friends all the time, but usually not for me. That little stinker…I ended up leaving Anika with Andrew for the morning because he needed that purpose…and she gives it to him. She loves her daddy so. She will mimic words he says, but wont for me. She always brings over this ONE book for him to read to her because he makes all the great sounds and she loves it. He hid the book on Friday, and SHE FOUND it and brought it to him to read. I think seeing her love for him is what makes him being sick even harder than just because he is my husband.  I hate the thought of him not being able to do all the things with her he loves to do. 


He will be seeing more doctors and hopefully we ca
n find a treatment plan that allows Andrew to go back to work and live a fulfilling life without being in chronic pain all the time.
I ask that if you know anyone with IC, you let me know.  I would love to learn more. I feel like Andrew is finding a lot of negative things online and we need to find positive stories.  HE is even looking into holistic approaches.  He read that colostrum has worked for some people with IC. Obviously, Colostrum from a human would be hard to obtain, but they do sell cow colostrum. 

Andrew’s dad said it best- Thank God it is not in Andrew’s nature to pity himself and to get down in the dumps over things.  He is such a positive person, so I truly believe after the initial shock and upset wears off, he will be able to start fighting this…or at least trying to find the best treatment for HIM! Depression is a huge issue with this disease and I pray that Andrew doesn’t fall into it.
If you watched the video in my last post- did you see Andrew’s reflection in the tv?? That was on Saturday morning. He was obviously having a good morning and we just need LOTS more mornings and days like that!
And holy crap, Anika turned 11 months old!   That girl will get a post about her last month all to herself! Hopefully tomorrow!  Because, dang, that girl has been up to a lot!  She is one active little toddler learning and saying more every day

I mean- look at how much this girl loves her daddy?

BUT, she sleeps like her mama. I used to sleep with my butt up like that...and even like that pose in current day :) 
Ill be back soon. I wanted to write this post last week because I had a lot more emotional feelings I wanted to record about the whole thing.  It is scary. Andrew's employment is up in the air.  OUR WHOLE future is up in the air. If Andrew cant do the same work, we really cant afford a 2nd child. That breaks my heart.
Thanks for the prayers and thoughts.

7 comments:

  1. WOW! You guys hang in there and I'll be praying for ya'll.
    I would think there has to be some sort of support group for people with IC?

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  2. I am so glad you finally got some answers, but my prayers will continue!

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  3. Oh sweetie! Prayers have been answered! Now you have a diagnosis! I really think things will get better. Just keep putting yourself in Andrew's shoes. Support him as much as you can. Vent to us on your blog or twitter. I'll ask my mom about ic since she is a nurse. Stay positive. Everything happens for a reason and I can't wait to read Anika's 11 month post. She blows me away how advanced she is!

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  4. Glad that you have a diagnosis, but what a hard road! I'll be thinking about you guys as you move through this next stage of your lives. Keep your chin up!

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  5. I am glad you got some answers. I hope you are able to find out more positive things in your research. Sending positive vibes.

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  6. I bet its such a relief to have some answers. But how frustrating. you guys are in my thoughts...

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  7. just sent you a fb message... thinking of you and andrew!! this is the worst, i know and i'm so so sorry he has to go through this!!!

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