I’m making the switch from Remicade to Humira for my crohn’s disease.

The muscle aches, which we attributed to an allergic reaction to Remicade, went away mostly.  However, after my 3rd Remicade treatment, the achey joints returned (maybe some slight muscle pain, but mostly just joints).  It was my elbows, fingers and wrists, ankles and knees.  For the most part, after about 5 weeks, all that remains of the aches are one elbow and both knees – consistently anyway.

Doctor today seemed like he was thinking about suggesting another round of Remicade… but then just said, lets just do Humira, I think that’s what we should do… Are you ok with it?  Oh, yes.  Definitely ok with it.  I certainly don’t want to feel these aches and pains… not feeling confident to carry laundry up from the basement for fear my knees will give out.. or carrying a couple bags of groceries makes my arms feel like they’ll fall off.. while I am happy to not have the abdominal pain, I didn’t plan to trade it for other pain.

The tail bone pain I was feeling before the holidays is completely gone. I actually wouldn’t have given it any thought, except he asked about it today.  So, I’m assuming the abscess was small and insignificant enough it just went away.

So, humira.  I will go to the doctors office and a nurse will show me how to do it.. from then, I will adminster the shots myself at home.  They assured me it’s easy to do – but I also don’t want to mess it up, as it’s so expensive.  No pressure.  But really, I think giving myself a shot will be a cake walk compared to going and sitting for hours at the hospital while they give me an iv of remicade.. yeah, I really don’t mind the switch.

Now, keeping fingers crossed Doc can push the change through my insurance.

Getting a colonoscopy to diagnose my Crohn’s Disease was probably one of the singly most horrendous things I’ve had to do.

A colonoscopy is a test done using a small camera on the end of a flexible tube about the size of an adult figure to look at the large colon and small bowel.  If the Doctor feels it’s necessary he or she may take small biopsies to look at more closely once the procedure is done.

For me, the test itself, though I did feel it at one point or another, was not the biggest issue.  The prep time before the test, was (no pun intended) a butt-kicker!  I was so terribly sick, my whole body ached, when I wanted to eat, I couldn’t, when I couldn’t eat, I was starving for food.  And thus, to prepare for the colonoscopy requires a liquid diet and laxatives and then later, fasting for several hours.. it was hot outside (and we don’t have a/c).. all I could do was lay in bed and cry that I was thirsty.  And I was a whiny thing too!

Drinking the laxative was nasty.. and let me tell you, it did it’s job!

My test was scheduled for the afternoon, which of course, makes for the longest of days.

The test itself, once we finally got in there, went smoothly, other than I did feel pain a time or two.  Even now, a year later, I remember whimpering that it hurt.. but it was quickly over (and I was pretty out of it anyway).

Once I had a chance to wake up I was given some fruit juice and ice… oh yes.. thank you!!

We all went in to talk to the GI Specialist who did the test.  He confirmed that yes, I have Crohn’s.  But he didn’t feel it was too bad (at the follow up appointment, he told me it was worse than he’d originally thought), and got me going on medications.  I was surprise how quickly everything started to work to make me feel like I was feeling better!

Not that having someone stick a tube with camera up your hind end is all that appealing, the test was necessary and wouldn’t have been so bad had I not been nearly as sick as I was at the time.

At 37 years old, and an otherwise healthy wife and mom of 4, I was officially diagnosed with Crohn’s Disease.

Over all, it was simple to diagnose, it was just a matter of my not having insurance and suffering for several months before my body finally said, “Listen, you must do something and do it now!”.

In hindsight, I see a few small things that were the beginning of my battles with Crohn’s Disease… First, I was getting nauseated from eating certain foods (onions, garlic, etc).  I took a while for me to link which foods were making me feel so sick (not to mention I went through a few pregnancy tests – not that I thought I was pregnant, but to prove I wasn’t).  Then this rash started… it was bizarre.. my shoes or socks rubbing a funny way would almost instantly produce this crazy itchy rash, and within a day (if I could stand to no scratch it), it would be gone… or, maybe not.. sometimes it was the size of a dime, other times the size of a dinner plate.  I thought it was a spider bite, heat rash, yeast (chest area).

Then in January 2007, out of the blue, one day, I had the worst cramping and it felt as if my uterus were 10x too big.. swollen.. it hurt to sit, hurt to walk.. My regular family doctor had the day off, so I saw an associate.  She thought I had Pelvic Inflammatory Disease – which, btw, is said to be caused by sexually transmitted disease.. I’m married.. so the implication was either my husband or myself had been cheating.  Luckily, I had done a little research on PID and knew that there actually are about 20% of cases that are unexplained, or caused by other internal  issues.. I didn’t stress on her opinion of the matter.

She shot me up with an antibiotic, gave me a round of strong antibiotics to take over the next week and wished me luck.

Within the week, I was dehydrated, sore, was in major pain and having huge issues with diarrhea and knew that PID was not my issue… I was uninsured and worried about getting our family into a financial problem.. I was hesitant to do too much.   Regardless, I ended up at the hospital where they ran a few tests and determined that I had some lower intestinal issues going on and needed to follow up with that.. but otherwise, thought things were ok.  Gave me fluids, pain medicine, antibiotics and told good luck.

A follow up with my family doctor… he didn’t feel that PID was my issue, but suspected I had either Crohn’s Disease or Colitis.. to treat either, I would need to see a Gastrointestinal Specialist.

We’re in to March at this point, and off to the GI Specialist.. who informed me the tests I would need… particularly a colonoscopy (and just how costly a colonoscopy is).

Symptoms I was having now were mainly severe pain and vomiting (with no rhyme or reason in regards to food)… and quickly, weight loss was becoming a major concern.

By early May of 2007, I had lost about 20 pounds – for most this might seem nice, but I was starting out at about 132 on a small-boned 5’7″ frame and getting down to 113 is downright sickly.  My mood was horrid, I wanted to sleep, I was in pain, I never knew if I was going to throw up my food or not… it was bad, worse than bad.

My mom came through for me and paid for the colonoscopy… as soon as it was done he let us know how bad things were and immediately started me on antibiotics (metronidazole (Flagyl) and ciproflaxicin) as well as prednisone.  Later, asacol and azathioprine (Imuran) was added to my daily medicine intake, a good multi-vitamin and because I had relux so bad (apparently part of why I was throwing up so much) aciphex.  For pain management, I’ve been given vicodin, then norco and percocet.

Am I all better?  No way.. I’ve been battling to get things under control ever since and just recently ended up back in the hospital.  Crohn’s Disease is for life… Now I have to figure out how to cope with it and make my body work with it.