Wednesday, February 13, 2013

Catching Up...

There is much catching up to do... Here's a little glimpse into fun scenarios that played out this fall during my blog silence! ;)

I had an intestinal obstruction in November that resulted in a 10 day hospitalization (including an ambulance transfer to a larger facility since things weren't improving after several days at the first hospital, and surgery was imminent if the blockage didn't get a move on soon). I've had these blockages off and on since a few months following my first surgery back in 2009, but had never had to seek treatment for one (and I never had a blockage that lasted more than 6-8 hours). This was not a fun ten days. I was so dehydrated and my veins are so bad that it would take three or four different people poking around just to get a vial of blood for lab work. Getting a peripheral IV in me is super hard, and once they got one in, it didn't last very long before the vein would blow. Finally, they put in a PICC line, which we had wanted to avoid due to my blood clot issues, but life was much easier for me and all the nurses and lab techs after that. ;) The NG tubes - which (sometimes) helped the nausea and vomiting - seemed to constantly clog and therefore not work and therefore need to be messed with, usually in the middle of the night. Then, in addition to just being plain sick, I had three adrenal crises from the dehydration and stress on my body. Thankfully, after I got transferred to the bigger hospital, the blockage passed on its own without surgery, which was an ENORMOUS answer to prayer!! Once it passed, I was plagued with several weeks of severe dumping (go figure - from one extreme to the other!). Dr. Saturday prescribed a very strong medicine for the dumping. Most doctors have not even heard of it, but adding a drop or two of it to some juice slows me down when the pills fail me.

From late November through the end of the year, I continued to run a constant fever, have a very elevated white count, and feel simply terrible. I slept upwards of 16 hours a day, and spent my "waking" hours trying NOT to fall back asleep.
My PCP was very concerned, but couldn't find anything that might be causing this, so she instructed me to follow up with my specialists, especially with a GI doctor.
The Rheumatologist said it wasn't an autoimmune problem, and made me go off my immunosuppressants in case it was an infection.
A visit to Dr. Saturday and a scan revealed that it was not an abscess (thankfully!!). He referred me to the Gynecologist and a new GI doctor.
A trip to the GYN resulted in him insisting, after exam, bloodwork, and cultures, that the ball was not in his court.
So, I started seeing Dr. New Jersey, the GI doctor, who ran some tests, which were normal. Thankfully, I didn't have any active Crohn's inflammation in my intestines, and they couldn't see the narrow areas of bowel that they believe are the cause of my obstruction issues. So he sent me back to the internist and Infectious Disease doctor... but I've already had the tests that he wanted them to run, and they were normal, so I really didn't know where to go from there. This Doctor Ping Pong was rather frustrating, to say the least.

And then, at the end of December, just as mysteriously as it came on, the white count normalized, the fevers went away, and I felt the best I've felt in months. I didn't change anything (except I was off my immunosuppressant, which typically makes me flare up... but my body does its own thing!), so I have no idea why this happened, but I went with the whole "feeling better" thing and lived it up!

I was able to take walks 5-6 times a week - and not just dragging my limping self around the block - we're talking 50-minute brisk work-up-a-sweat walks (although with my constant hot flashes, pouring sweat is not necessarily a reflection of how hard I'm working)! With each step, I thanked God that my legs were holding me up, for the lack of pain, and for the strength I could feel growing in my body. It was truly amazing! I had a great month, my stomach was doing well, I cleaned up my diet, and with that plus the exercise, lost 10 lbs of steroid weight in a healthy manner! Who woulda thought, after all my struggles to GAIN weight, that I'd be in a position of having to try to LOSE some weight? God is good. ;)

In late January, I started having some pain around my knees when I was walking, so when I went to see Dr. JP (Rheumatologist), I told her about it. It wasn't in my joints - it felt like the tendons around my knee. She felt around and pinpointed the tender areas and sighed. "I hate to tell you this, but you're having pain at the edge of your joint capsule. You're about to flare up." I had just finished telling her how good I was feeling and how I was off methotrexate and loving being off of it...bummer. She told me to immediately start back on the shots - I'd been off them for almost exactly a month. Guess how long it takes the meth to get out of your system? One month. My body was feeling the change. And she was right - the next day, I woke up with red, hot, swollen joints. Thankfully, the flare up was very short-lived, and the joints are doing better now, but I had to increase my steroids, I'm still fighting really intense fatigue, and my stomach has been all messed up. Seeing the dramatic difference in my energy and functioning made me realize how even a mild joint flare up makes all my other issues spiral out of control.

JP Dr strongly encouraged me to start a new treatment - Cimzia - and I agreed. Cimzia is a biologic therapy, like Remicade and Humira. It's a shot I'll give myself every two weeks. JP Dr is concerned that my body continues to be in an almost constant state of inflammation, and my body really tanks when I get sick. The methotrexate alone is not enough to keep it in check, so when I flare, we have no choice but to increase my steroids, which is causing a lot of unwanted side effects and damage to my body after so many years of use. I also have that systemic inflammatory reaction when I get sick, which is rather dangerous. Using Cimzia would allow better control of my autoimmune stuff to hopefully prevent this reaction from happening. I will start this new treatment at the end of February. From researching on PubMed, it looks like efficacy at 12 weeks is a good predictor of long-term response, so if it's NOT helping after 12 weeks, it's unlikely to work, and I'll quit taking it.

Right now, I'm in the midst of some pretty bad tummy issues... I've been unable to eat much solid food for about a week now. :( I had a bunch of tests run on Monday. So far, they actually look pretty good, which is unusual for me and therefore GREAT GREAT news! Other tests are still pending, and I need to call the GI doctor to decide where to go from here. Based on my good lab work, we don't think that it's an infection, which is good, but it also scares me, because the pain and way I feel sick is very reminiscent of a UC flare up... makes me nervous that it might be Crohn's coming back.

I'm sorry for the long blog silence - sometimes I just need a break from writing about my health! I know this was an incredibly long post, so congrats for making it to the end. As always, God has continued to prove Himself faithful and good in the midst of sometimes difficult and sometimes wonderful circumstances. I trust that no matter what happens, good or bad, He will use it for good! I've been surrounded and buoyed by so many people, and I'm thankful for all of those who are faithfully provide so much encouragement and support! What a blessing!

Hannah ;)

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