Last Friday, I started Remicade in hopes of it working to keep my crohn’s disease under control. I am also continuing to take my azathioprine (imuran) daily.

I had been feeling so totally crummy.  It’s like I’d  been drinking a “lethargic” potion.. my body was so tired, my arms and legs so heavy – like lead.  To make myself get out of bed, or off the couch, required every ounce of willpower I had in me.

But in the last week, since having had my first remicade treatment, I’m slowly starting to feel more normal – as if I even know what normal may feel like any more.  I am still having some crampy, even sharp pains in my lower abdomen.. but overall, I am feeling much less pain than a month ago.

I’ve been on Flagyl and Cipro for almost 30 days now (for a small abscess and a flare)… so my feeling better could be attributed to the antibiotics… I’m hoping that’s not just it though. I really just want this to work.

How did the Remicade Treatment go?

When I was looking for information about what they do, I couldn’t find much, other than it was given via IV. Here’s how things went for me…

I had mine done at the hospital. Some people get their treatment at the doctors office, but apparently, some insurance require it to be done at the hospital.

When I got there, I wasn’t sure where to go, so I asked at the information desk. A really nice volunteer took me up. She even made sure I was in the correct place before leaving – just in case I wasn’t where I was suppose to be.

I had a room to myself, with a pretty view of the woods behind the hospital. There was a bed, which I considered snuggling into right away, but instead I opted for the not-totally-comfortable recliner and kicked off my boots.

The nurse explained a few things – that it would done via IV, they would start it very slowly and check it every 15 minutes, slowly upping the speed until it was going all the way. She said they’d found it to cause less issues starting slower (as in, less irritation, less allergic reaction). When I get there, they place a call for the remicade medication to the pharmacy. It takes about 45 minutes for it to get processed and brought up to the room. Once there, they hook it up to an iv – which they started just before it got there, as well as a blood pressure cuff. They also put a steroid (similar to prednisone) in the iv, which also helps to keep down any reactions.

I asked for a blanket (she pulled from the warmer, yum!) and snuggled in with a book – Mortal Fear, by Greg Iles (I haven’t got my Amazon Kindle yet, but when I do, oh boy!)

The whole visit took about 4 hours, but we were slow getting things started. She said it takes about 2-2:30 hours for the iv remicade to go in (I didn’t bother to check the clock, but will next time) – so the rest is just getting things ready to start. Once it was done, it was very quick getting out of there.

No reactions, no issues at all, other than the nasty headache, which lasted the rest of the night.

My next appointment for remicade will likely be Jan 30. It’s suppose to be given at 0, 2 & 6 weeks then moving to every 8 weeks – though I think my cousin gets his 3 months apart now (he has colitis, so maybe it’s a different timeline.. not sure).

I’ve been meaning to post this.. if for no other reason than to have it for my own records down the road.  As I’m sure things will change soon since I’m still having issues.

Current Daily (long-term) Medication:

Asacol® (mesalamine)
- affects a substance in the body that causes inflammation
- 2 ?mg pills – 3 times a day

Azathioprine (Imuran)
- used to inhibit the immune system
- 75mg alternating the next day with 100mg

Aciphex (rabeprazole)
- treat gastroesophageal reflux disease
- 20mg – 2 times a day

Prednisone
- synthetic corticosteroid
- 40mg (though this should change quickly, I hope!)

Antibiotics

Flagyl – 500mg @ 3 times a day (14 day cycle this time)
Cipro – 500mg @ 2 times a day (14 day cycle this time)

Other medications I take, either daily or as needed:

Claritin – generic, for allergies – this also helps my sinus headaches which I call “sinus migraines”.
Yaz – I have 4 wonderful children, love them dearly.. do *not* want any more.
Vicodin (acetaminophen and hydrocodone) – no longer strong enough
Norco – equivalent to 2 vicodin without the extra acetaminophen – 1 pill every 4 hours as needed
Percocet – 1 pill every 4 hours as needed
Antidiarrheal – as needed, according to package instructions.

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.