Monday, July 5, 2010

a note about my health - crohn's

(photo courtesy of french word -a- day blog).  love this photo.  love the loyally waiting dog.  the worn door (my favorite) color and that color is perfect against that ochre yellow wall.  the pic is so fench with so few props.

ok, so for many years i have had trouble knowing from one day to the next how i will feel.   what my energy level would be, my focus and just in general my well being. 
i just figuered it was old age and being overweight that altered my energy level so much.  but now i know, i have just been diagnosed with crohn's disease.  although the diagnosis is new, the disease within me is not.  it was discovered during my first colonoscopy in 2003, but it was not expressed in the report as such.  so no one told me.  why?  well, because i had a bigger health crisis going on at the time and the treatment for it was the same treatment for crohn's.  the report just said to continue current treatment.  
in 2003, my kidneys failed abruptly.  that was the bigger crisis.
fortunately t i got 1/3  function back thanks to heavy doses of prednisone and 2 years of celcept, the anti organ rejection medicine.  the cause: autoimmune disorder.  my body turned in on itself and decided to reject my perfectly normal kidneys.  since my body rejected its own healthy kidneys it therefore was not an option to get a transplant.  my body would reject foreign kidneys even faster.   i was doomed.  i also had inflammation in my irises, my bladder and my intestines.  i was kinda sick.
but the chemo took and here i am today. 
then a 7 year remission.
for the last month i have been feeling very ill.  my intestines just were not functioning.  i looked 10 plus months pregnant and was horribly uncomfortable.  after 2 ct scans and another colonoscopy it was diagnosed as crohn's.
crohn's is not a great disease to have but its better than cancer or kidney failure.  i am thankful to know WHAT it is i have been suffering with and i am thankful to understand what has been going on with my body for so long.   i want to reclaim my day to day life and now i will be able to manage it. 
did i tell you i am happy to know what it is i have????  i am because now when i look back i can see it with a sort of  "oh no wonder i didn't feel like doing this or that".  
one thing i have always hated about myself was that i have a hard time committing to doing things in the future - you know, simply calendaring.  its hard to get things done or have a social life that way.   but now i know why i hate calendaring its because i have never been able to predict whether or not i would feel well enough to do it at a future date.  whatever "it" may be.
so today i am experiencing an awareness that is bitter-sweet.  i hope with my new diet and health treatment plan i will be able to begin to calendar things properly and in good consciousness.

i wrote about it here because i know my friends want to know where i have been and what is going on.  also maybe it will help someone who has it,  know that they are not the only one.  it can feel pretty isolating when you are sick.
so, is there anyone out there in cyberland have good crohn's diet recipes?


Anonymous said...

Hi, Lisa, thank you for sharing your health update, I was wondering what was up. I hope that now things have been identified it will mean finding a new lifestyle that will bring you better health and peace of mind, and most importantly, having energy to do the things you want to do...(one of them being coming to visit me sometime next year ;) Big hugs! Lisa

verobirdie said...

Oh, you must be relieved to be able to name what is wrong with your body. A shame they did not tell you in 2003, even if you were already under treatment. It would have helped you deal with your body afterwards...
I'm sure you will find a diet and treatment that will help you.

Diane Chen said...

Dear Lisa,
I'm so glad to hear that your newest health problem is a manageable one. I'm sure you can find a lot of information and support on the internet - it's not as uncommon as you might think, nor as debilitating as some think either.
Good luck! xoxo

Earthula said...

Geez! you are so dynamic even with Crohns.

I will send anything on that I find out about it.

good post. Hugs and Hearts to you Lisa.

Pam Carriker said...

I'm so glad they found out what's wrong! Now at least you can move forward and take control over this thing. I'm sorry you're sick, but oh so glad it was Crohn's and that you can get the treatment you need to get back to good health. Love you Lisa, and hope you feel much better soon.

Cindy said...

There are so many ways to approach Crohn's today. I am sorry you have to fight this battle, but believe it will bring even MORE depth to your inner life and work.

olive said...

once you know you can move on and get better..... Ciao

Carol B. said...

Lisa, I had no idea you have gone through so much! I see all your beautiful, productive work and I think everything is just fine and dandy with your life. I am glad that you are getting more information to deal with whatever comes your way. And thanks so much for sharing because it's true that those of us who are getting older (I'll be 55 tomorrow-YIKES!) start going through physical things and we wonder what the heck is going on. It's true that sometimes it's just getting older, which is hard enough to deal with, but it's important for us to check out other possibilities so that we can be aware.
Take Care!

WindandHoney said...

I do not have Crohn's but rather have a different chronic health issue. But your description of never knowing how you will feel from day to day is one that I share.
I am several years ahead of you in dealing with this chronic issue of fatigue. So, I want to encourage you by letting you know that you will adapt and learn how to create a schedule that works for you. You are obviously a person that loves to create and wants to be productive. Those traits will work within you to help you find a balance between your health and your art in a way that will work for you and your body. It just takes time.
Hugs to you today!

lisa bebi said...

thank you for the encouraging words. i really wish we all could have a little better control over our bodies, but - well, i guess we won't - not in this lifetime anyway. i am very thankful that we have the medicine and know- how that we have today, though, don't get me wrong.
and although i complained that i didn't get a diagnosis fast enough, i do marvel at what doctors can figure out, there are so many exceptions to the rules. for instance i looked at webmed for my own diagnosis - i totally passed over crohn's because the symptoms generally are diarrhea and colitis type symptoms and pain. mine symptoms were the opposite - i was totally blocked from my valve between my upper and lower intestine swelling up and closing. i was losing weight but looked like i was gaining as my stomach swelled out like a 10 month pregnnacy.

so the relief from medicine was wonderful. just to feel like a human again is a lot to appreciate. and i do. i looked at my own CT scan with my GI doctor - i could see what he was saying - a little. apparently it was obvious to him.
i am lucky that i have a cousin who is a doctor - he helped me with hand holding and positive thoughts all the way through it. also he diagnosed it first and told me what t expect. just knowing what it is and what to expect is SO important. he knows and that is why he helped me so much. positive mental health is a BIG part of healing.
thank you harold, i can't tell you how much that has meant to me and my family.

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