Doctors, medicine and strange conditions

Ok so ever since 9th grade I knew I was “unique” when it came to illnesses.  Back in 9th grade I went camping out at Lake O’Neil with Girl Scouts (yes, I was still a Girl Scout in high school) and had a great time.  But a few days later I developed a strange rash on my body and arms.  Mom thought I was having a reaction to a new laundry detergent.  We rewashed all of my clothes and bedding in the old stuff, but it didn’t clear up.  Actually it got worse.  Long story short I saw 9 doctors in 3 days and they had no idea what was wrong with me.  They referred me to a dermatologist and come to find out I got some strange virus which we now call in my family Veronicaticulitis.  I missed 3 weeks of my freshman year and I still have scars from the crazy boils I got on my arms when it was “clearing” up.

Then in 2002 I had a super sharp pain right under my diaphragm.  This all happened right as I was about to move out to Colorado for school and after some blood work they told me my liver enzymes were sky high!  I underwent a butt load of tests (x-rays, ultrasounds, cat scans, and a menagerie of blood tests, including tests for rare hepatitis, mono and other weird liver conditions) and everything came back normal.  I was told it was probably fatty liver (since I was fat) and that I needed to eat boiled chicken and rice for a month and come back in for more tests.  Real scientific.  But I did it and the levels dropped a little, but nothing to get excited over.  We just accepted that my high liver enzymes were normally high.

Jump forward to 2008.  I just got back from Israel and my stomach was freaking out!  I was using the restroom 5-10 minutes after eating anything and god help me if I ate anything greasy!  I thought I had developed some weird food issue and I started cutting out and adding things into my diet, doing food trials.  I knew that after I had Caleb I had become a tad bit lactose intolerant, and I figured this was all due to stress since my old roommate bailed on me right before I went to Israel.  After much begging from mom, I went to the doctors.  I told him what was going on, and asked for a round of antibiotics, hoping that I just picked up for sort of bacteria on my travels.  Well that didn’t do anything and he then told me I needed to see a gastroenterologist (digestive doc).  I went and saw Dr. Kumar and he told me I needed to have a colonoscopy.  I went home and cried!  I was too young to have that done!  But after my procedure he came and told me I have ulcerative colitis (small ulcers all along my intestinal tract). Of course this is actually rare in women in my age range…OF COURSE! That is when all of the medicine came into play. Pills, pills, PILLS! I was taking up to 20 pills a day.  Luckily they changed my meds and now I am taking my intestinal meds once a day.

Next thing on the list was my liver issues.  Dr. Kumar ordered a liver biopsy to get down to the root of my levels and to why they were so high.  We got the results and he gave me a call.  “Hi Veronica, this is Dr. Kumar.  We have the results of your liver biopsy and it appears that you have Primary Sclerosing Cholangitis, which is rare in women and even more so in your age group.”  OF COURSE IT IS!!!!!  Basically I have sludge that has built up in my bile duct and my liver is unable to get rid of the waste the correct way, so my levels are high because of it.  I scheduled an appointment with him to discuss this new issue and he informed me that because of my UC (ulcerative colitis) and the PSC my chances of getting colon cancer are very high. FAN-FIRCKIN-TASTIC!!!!  He told me that I have to have a colonoscopy every 2 years for the next 8 years (until I’m 40), then yearly.  Then he prescribed me more medication to help with the clearing of the bile duct.

Then a few months ago, life was pretty normal for me, then I noticed my shin was super sore.  It felt like someone kicked me with a steel toe boot!  It never developed into a bruise, just a huge bump and then it started getting red and super inflamed. I went to urgent care twice for it and the 2nd time the doctor looked at it and said I know exactly what that is (thank goodness I thought because the 1st doctor had no idea).  He walked out of the room and brought in another doctor to look at my leg and they said “You have a rare condition (there’s that stupid word again…rare) called Erythema Nodosum.  It is a rare condition that people with UC get in their shins and forearms where the fatty cells become super inflamed.”  They then referred me to a Rheumatologist who told me that this would be something that “typically” only happens once with UC patients but I can also develop Ocularitis (swelling of the eyeball) and Rheumatory Arthritis (I know I will more than like have that when I get older since my grandma had it and I am already showing factors for it).  He then prescribed me moooooore medicine (steroids).

It seems like my life is revolving around a medicine time table:

Breakfast: Vitamin and steroid

Mid-Morning Snack: liver meds

Dinner: steroid

1 hour later: liver meds

Then at least another hour later: intestinal meds

God help me if I miss any of them because if I do…it throws off my entire day, haha.