more meds

it's been a while since i've posted on here... i guess that's a good thing. anyway, i've been having a little bit of misbehavior from my stomach and joints the last month or so. not to mention i have these two weirds knots on my calves that dr. christopher calls erythema nodosum. i'm not having a flare, but things just aren't quite right. coincidentally, my doctor called me out of the blue to set up an appointment since it had been so long since he'd seen me in the office. i gladly went to visit him.

from my visit came a prescription for iron supplements b/c my iron was very low. (maybe explains why i had been so stinkin' tired the last 3+ weeks.) i also got put on Entocort EC (9 mg/day). this is a corticosteroid specifically for Crohn's that has much less severe side effects than say, prednisone. less of the drug is systemic--- 90% is metabolized on first pass through the intestines. anyway, you can read more about it here if you're interested. i'll only be on the Entocort for about three months, assuming it gets whatever inflammation is going on under control. and dr. younes confirmed the erythema nodosum on my legs- can't do anything about those, though. they are a result of inflammation associated with the crohn's, so they should go away on their own.

family planning came up in our discussion with dr. younes. apparently more and more research is showing that it is better to stay on your meds (like the Humira) instead of coming off and risking a flare up. (no nutrients for baby = bad) there is a new drug out for Crohn's called Cimzia that is a once-a-month treatment given by a medical professional. supposedly it doesn't cross the placenta. i'll be doing some more research on this drug before the time comes for kiddies. chris could give me those shots, so it might be a possibility. no decisions need to made yet though.

as always, please keep me in your prayers.

love & blessings,
sara

chickened out

I went ahead and gave the next two shots in the stomach. I don't know if I can do the leg ever again. That hurt so bad- gives me the shivers just thinking about it. Sarah, to answer your comment... I have tried not icing my stomach and that was a huge mistake. I thought I was going to throw myself out the window. So not icing my leg is out of the question. It might help in that particular location, but I am definitely not willing to try it. LOL! I loaded up on Benadryl before the last two shots, so that helped with the residual pain and inflammation on my belly. It's tolerable at least. :)

Anyway, I've been reading some things about Crohn's patients who are having surgery as a "preventive" type treatment. In other words, you remove the bad section while you are in remission. I'm thinking about this. 25% of patients who have surgery never have symptoms again. I REALLY want to come off this Humira. It controls the Crohn's but I have so many other problems/issues because of being on an immunosuppresant. Plus, once Chris and I decide to have children, I don't want to be on meds while I'm pregnant. Anyone have an opinion on this, especially you medical folk?

I am thankful that God is keeping me Crohn's-free. And my health is not that bad, really it's not. I just want to be off these meds.

um, the leg?

Ok, I am tired of getting shot in the gut. The Humira patient leaflet thing has a diagram showing you can shoot the top of your thigh muscles. Hmm... don't know if that hurts worse or not but it's worth a try.

Step 1) Ice the leg until it is completely numb
Step 2) Prepare shot
Step 3) Wipe injection site down with alcohol
Step 4) Injection (done by someone other than me)
Step 5) Scream: HOLY MOTHER OF A BISCUIT! NEVER IN THE LEG AGAIN! NEVER IN THE LEG AGAIN! HOOOOOOOOLY CRAP! OH MOTHER OF PEARL!
Step 6) 10 seconds after step 5: Recover with slow deep breaths and ponder why you shot yourself in the leg. Did the needle/drug hit a nerve ending? What the heck.

I must say that the injection was ridiculously painful- much worse than the stomach, like I thought that was even possible... However, the pain was not residual like it is when I shoot in the stomach. It just hurt like crap for about 7 seconds, then it was done. And the allergic reaction was much smaller and did not itch. SO... do I shoot my leg or my stomach on Sunday? Decisions, decisions....

Post a comment and vote LEG or STOMACH.

i failed...

Long story short... I finally got brave and decided to give myself my shot under the supervision of my doctor-to-be-husband. He offered to at least hold the shot in place but I refused the assistance. (After all, we had already done two previous shots this way) Well, I pinched up my skin, pushed the button and felt medicine go in, but apparently I didn't hold the shot tight enough against my skin so the needle didn't even go sub-q. Suddenly there was $700.00 worth of medicine flowing down my stomach and onto my leg. Awesome.

That was my last shot in the fridge so we said screw it, at least I got a little bit of drug in me. We'll just give me the next one two weeks from now as scheduled.

Oh, and Chris will give me the shots from this point forward.

nothin's happenin'

My health is good, which is why I haven't had to write anything lately. The Humira shot this past Sunday produced a much less intense local reaction. Weird. I always take 25 mg of Benadryl, but for some reason the red, itchy patch was much smaller and not raised like usual. This is a blessing, but I'm perplexed.

I haven't had any flare-ups in my joints since mid June. A miracle, to say the least.

I'm doing some research into other treatment options for Crohn's. TNF-alpha blockers are just too intense. Too many strange, hidden (and unhidden) side effects. In my ideal world, I would have surgery to remove the diseased portion of my small intestine, then never have symptoms again. That would be a wonderful day in my life...

Until then, I will continue to trust the Lord one day at a time. He clearly is taking good care of me. :)

"And the prayer offered in faith will make the sick person well."
James 5:15

Everything is going pretty well right now! Still no stomach problems, of course, and my ankles haven't been acting up either. =D

So I had a strange occurence on my neck a few weeks ago... I went biking one evening and came back with a ringworm fungus on the side of my neck. Random?! Chris confirmed that it was fungus, so I promptly went to walmart and bought some generic fungal cream (i know it says "for athletes foot" but you can use it for just about any fungus, believe me.) So I apply this cream like twice a day for 4 days or so and wah-lah! fungus is practically gone. But suddenly my neck is extremely dry, red, blotchy and itchy. Great. Husband-doctor Chris examines it again and says he thinks my ezcema has flared up on my neck due to the fungal cream drying out the skin so bad. Awesome. So I lather up my neck with Aquaphor just about everyday (whenever I actually remember) and hope that it simmers down without the use of steroid cream. Whenever I did anything that got me hot or sweaty, my neck would itch like crazy to the point of me wanting to claw it off. I was miserable during our entire game of disc golf last weekend. Anyway, thanks to my sweet husband for faithfully applying moisturizing ointment to my neck, the ezcema is finally under control I think. You can barely see it now.

I do have dry ezcema patches all over my legs, but I'm lazy (let's be honest here) and don't use lotion like I should, so that's what I get.

The positive thing to take away is that I'm not sick and I can walk without issues! Praise the Lord.

Allergic Rxn

So the last four or so Humira shots have produced a localized allergic reaction on my stomach. The injection site gets a very large red, itchy area around it and it feels hard under my skin. A couple doses of Benadryl clears it up in one day, so my doc isn't too worried about it. The shots are keeping me Crohn's-symptoms-free, so we don't take me off the med just yet. I continue to have issues with my ankles getting arthritis-like problems, but the pain and inflammation goes away and comes back later. It's weird. The eczema on my legs is trying to flare up again too. I think I even have some spots under my arms- no wonder they were itching...

Philp 4:4-7
"Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."