JRA.... Journal of a Radical Arthritis Chick

Here I give advice, speak of my experiences and give information to those who want to better understand Rheumatoid Arthritis. I am NOT a medical professional, and you should always seek advice from a doctor.

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Location: MA, United States

Hello everyone! I am 28 years old and was diagnosed with JRA (Juvenile Rheumatoid Arthritis) when I was just 3 years old. I've had my battles with this disease over the years, and have decided to create a blog. I want to share my stories and adivce with other RA chicks, or anyone interested, to raise awareness and get insight from others. Feel free to comment/question me about anything. Thanks, and I hope you enjoy!

Thursday, April 14, 2011

Auto-immune: the gift that keeps on giving!

Okay, I can't take credit for the title of my blog, someone commented on a status on my Facebook with that and found it fitting for this blog.  It's not an informational blog today, just one of my thoughts rambling on, and maybe a few questions for my readers later on.

I've been having bad digestive issues for months now, I'd say for the past 7-8 or so.  They started off minor, happening once a month or less, so at first I figured it was just something I ate.  Sometimes when I'm on the run, I do get fast-food, but I don't eat it very often so I attributed the problems to that.  In September I had three days straight of severe pains and diarrhea, went to the E.R. and they claimed it was just a stomach virus.  Since the pains and diarrhea went away after another two days, I thought the same thing and just brushed it off.  It wasn't until a few weeks later, when it happened again, and it started happening more often, and more severe, when I became concerned.  I finally made an appointment with my primary care doctor in March to hopefully see what was going on with me.  After describing my symptoms she said it's probably just Irritable Bowl Syndrome (IBS) but sent me for blood work and stool samples and also sent me to see a gastroenologist (digestive specialist). 

I had the appointment with the specialist on April 7th, and it didn't go as well as I hoped.  First, I absolutely loved the doctor, she was very warm, almost motherly.  She was also very well educated, she knew every one of my illnesses and medications, no questions asked.  I felt very comfortable with her, and knew I could trust her judgement.  At first she was mentioning IBS as well, but when she looked at my stool sample, her whole expression changed in her face.  She told me they showed a high white blood cell count, which is common with something called Colitis (Ex, Ulcerative Colitis or Crohn's Disease).  She came over and held my hand and told me I'd have to have a colonoscopy, not something she'd like to put me through, but in order to find out what it is, this procedure has to be done.  I am totally okay with having a surgery if it means I will find out the answer to my problems, I really am having an awful time with these pains, they just seem to be getting worse.  I have my colonoscopy scheduled for May 9th, and of course I'll be updating everyone with the details and results afterwards.  When I got home I emailed my Rheumatologist, because I am close with him and he had asked me to let him know how I made out.  He thanked me for updating him and said that if it is Colitis, it complicates my case even more and would like to work with my gastroenologist for medications, since the same ones are used for both.

I just don't know what to think or feel right now.  I always tell myself it could be worse, but in all honesty, I'm kind of scared.  Colitis is inflammation in my digestive track, there are a few different kinds, depending on where in the track is affected.  It's another auto-immune disease - does this mean my R.A. has anything to do with it?  If so, does it mean that it's spreading?  I didn't ask these questions to any doctors yet.... I'm trying to wait until after the surgery and I get the results before I really stress myself out. The key word there is trying

Today I was supposed to have an appointment with a specialist about treatment for my Osteopenia (bone loss) but right before I was headed out the door, the office called and had to reschedule because the doctor had an emergency.  They didn't have another appointment until June, but I am trying to see if I can get in sooner.

Another new thing, I have been on Methotrexate pills for about 7 months now, along with Humira (which I've been on for about 6 years), the combo still isn't working.  Before completely switching to a whole new regime of medicines, especially with the digestive issues now, we are trying to exhaust all options at hand right now.  We decided to switch to Methotrexate injections 25mg, instead of the pills; because injections absorb all the medication into your body, whereas pills only absorb a portion because our stomach acids destroy some of it.  For example, I was on 20mg pills, and my body was probably only absorbing 12-15mg.  We've maxed the dose out, so hopefully this works, it will take a few weeks to clearly see. 

Thanks again to all my readers who keep up with my blog, I enjoy writing it and researching different ideas.  Sometimes I'm not sure what to write, and other times the ideas pour out of me.  As always, I'd love YOUR input. What would you like to see in my blog? Any suggestions would be great.  Thanks and take care everyone!

2 Comments:

Blogger Melanie: I am Me, Myself and I said...

Very good post Mallory. I still think it stinks you have to wait so long for the procedure. Waiting is the worst part. It is true that many of the same drugs we take treat Chron's and Colitis. Which always made me wonder why I had symptoms if I was taking drugs already promoted as treatment. Sometimes I wonder if we actually have all these secondary disorders or if they are just the symptom's of a much bigger diagnosis. You know where know two patients are the same we all have different symptoms. Am I even making sense ツ

April 14, 2011 at 4:35 PM  
Blogger Mallory said...

Thanks Melanie! I know, I don't want to wait that long, but it's the soonest she had. I have Easter and some family parties between now and then anyways, so I guess in worked out in a way. My gastrologist explained that if it is Colitis or Crohn's, my symptoms probably would be a lot worse without the meds, so in a way they'd be working. And I think I understood what you meant, no worries! :)

April 14, 2011 at 9:45 PM  

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