Sunday, March 18, 2012

Where do I start...
for the past 8 months it has been easier to say "we're great, all is well, everything is wonderful" instead of telling the truth.  The truth isn't so wonderful or great.  It is also easier to hide behind the other and to an extent start to believe it so you don't have to admit the real deal.  Whoa...the real deal.  Here it is... I have Crohn's.  My immune system is attacking my small intestine, this has some rather unsavory results.  If I don't get a handle on this, I will suffer some pretty scary consequences.  Life altering ones.  Just take some medicine...you might say.  Well, I have, but to fully get the picture....strap in and hold on tight, we are about to reflect on how I got here.  Here we go.
In Oct. 2008 I got the swine flu, then it became pneumonia.  I ended up in a German emergency room and they standard test your white blood count to detect inflammation.  Well, my was very high (no biggie- it was due to the pneumonia) After I recovered my normal American doc redid this test.  Still high, but no alarm yet.  We checked my blood again after a couple of months...still high.  Well, I had no outward signs of inflammation, but my blood said differently.  I had a sinus infection sometime in there so my doc sent me to an ENT doc.  So here we are at June 2009 and my ENT doc says you must have a chronic sinus infection.  I have surgery to fix a deviated septum.  My sinus' clear up but after another test to check my white blood cells, they are still abnormally high.  Thinking it is a lingering result from the surgery we wait a few months.  Back to the lab I go and this time the results show high inflammation and low iron.    Iron supplements are prescribed and off I go, thinking this is the fix.  Not so fast....the iron supplements do nothing.  Yet another blood test with the same results.  Excepts my iron is very low and now my Vitamin B12 is low.  The doctor gives my a Vit B12 injection and refers me to a gastrointerologist.  Uck!  A gut doctor?!?!??!  It took forever to get into him, but in the end, he discovered the real problem.  I had to have a colonoscopy (don't laugh..one day you will find yourself scoped, it could save your life)  Gold mine!!!!  Where my small intestine ends and my large intestine begins (terminal ileum) I have about a 10cm area of diseased area.  After a MRI of my stomach area a second location of inflammation was found at the very beginning of my small intestine (duodenum) about 6cm long.  Now, in between all these test, I experienced the monster that Crohn's is.  It was an ugly, painful nightmare.  My first flare brought me to my knees in more ways than one.  It was a difficult time that I will skim over.
Here starts the medicine part...My GI doc prescribed an oral steroid for me.  It was AMAZING!  I was normal!  I could eat anything I wanted (and I did) without any issues.  I could even forget I had this disease.  Looking back, I took the easy road here.  I relied fully on the drugs and took no responsibility for what I could control, namely food. After a bit, some of my symptoms peeked through, so I just upped the medicine.  Until I was at the max dose.
In Oct 2011 we moved back to America!!!  It was so exciting.  And stressful.  I went crazy....eating out at all the restaurants I wasn't able to go to for three years.  My guts fought back....to a new GI doc I went.  Things start heading downhill here.  He puts me on an immune suppressant.  This is something a person who has had an organ transplant takes to avoid the body rejecting the foreign organ.  It makes it easier for me to get sick, and once sick, I can become VERY ill and unable to fight off infections.  A simple cold isn't that simple anymore, I have to be on guard for it to turn into something worse.  The immune suppressant started to work, and AGAIN I could live in denial, a few months later, the dose needed to be upped, then it needed to be upped again.  I am at the max now.  My Crohns symptoms are returning. 
In eight months. I have gone from the entry level drug for this disease to now, facing the end all of drugs.  Remicade infusions.  It is the last option.  If it doesn't work, I am screwed.  My head hangs low, right now, I did this to myself.  My doctor said, come in to see him and talk about when we will start the infusions.  I begged for 30 days.  30 days to turn back some of the damage I have caused.  30 days to change.  He only gave my 30 days, too much more and irreversible damage may be done. 
If I am successful, I can avoid Remicade, take back my health and get off the immune suppressants.  It is clear what I have to do.....it is time to change.

1 comment:

  1. Dear, dear Kelly. Don't beat yourself up. The disease isn't your fault, even if you didn't make perfect choices all of the time. I have chronic stomac ulcers....which (at this point) is not as serious as what you are dealing with. I have been making some poor choices too. This encouraged/reminded me to take good care of myself, even if my meds are helping me feel better right now. I'll be praying for you!!! Glad you posted this!!! ((((HUGS))))

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