lungs and such

There is not much to report about the current status of the Crohn's disease.  My stomach is still doing excellent- no issues there whatsoever.  I still believe that the Lord healed me.

However, two new lung nodules were found on December 18 (boohiss).  I was asymptomatic, but the doctor put me on steroids again in attempts to kill the inflammation before it got ramped up.  I'm feeling good, despite being on 40 mg of prednisone.  The two weeks of 60 mg was a little more difficult to deal with, but that passed quickly.  I am still having the annoying urge to eat all day, but due to my diet and current exercise regimen, I am combatting weight gain as well as other typical side effects.  During the first round of steroids in August, I was eating what seemed like six full meals a day.  Now I eat a small snack to satisfy my need for immediate food.  Usually it's a "healthy" snack. =)  Although, chocolate covered almonds were a weakness a few times, but those are gone and out of the house now, so byebye temptation.  I like munching on wheat crackers, cottage cheese, raw veggies, or having a cup of coffee with milk and honey.

I am still hopeful that I will not be put on Cimzia or Imuran once the steroids are done with.  If my lungs would start cooperating with me, that would be nice...

an amazing transformation

I've changed my diet and I believe the Lord has healed me! 

Fellow Crohn's patients, please try this out.  I am medicine-free!!

Long story short, I was hospitalized twice this summer for pulmonary Crohn's disease.  It was a horrible, painful experience that I hope no one else has to go through.  I was on steroids for three months after getting out of the hospital.  I decided enough was enough.

So I radically changed my diet.

I am not necessarily promoting anyone, but I got my diet ideas/plan from Jordin Rubin's books "Patient Heal Thyself", "The Maker's Diet", and "The Great Physician's Rx" along with a book by another author titled "Inflammation Nation."  I am not doing the extreme version of the diet in any of the books, but I'm following the basic principles and my life has improved 100%.

Here's my food plan:
Extremely limited sugar (basically none)
No high fructose corn syrup
No “white” foods: I’ve switched to 100% whole wheat flour (bread and pasta) and brown rice
No white potatoes (only b/c they irritate my stomach)
No preservatives/artificial flavors/artificial colors
     http://en.wikipedia.org/wiki/List_of_food_additives
No hydrogenated oils (i.e. margarine)
No soda of any kind
No deep-fried food
No pork or shellfish (Although I don’t think these meats are sinful to eat, I do believe Leviticus 11 holds true for them being unclean.)
No cow’s milk (excluding yogurt, cheese, and butter)

If I need to sweeten something, I use honey.  I drink goat's milk.  I put real maple syrup on my whole-wheat pancakes.  This diet is liberating... especially since I am not taking shots or pills anymore!    I have learned to LOVE fruit... fruit smoothies are my new best friend.  I love vegetables, always have, and love fish.  I eat beef very sparingly.  Try lamb instead!

Try it.  Please.  If it doesn't work, then it doesn't work.  But after being on Remicade, then Humira, then steroids, this has been the greatest "treatment" so far.  I have zero symptoms of Crohn's.

I saw my GI doc on October 29 and he gave me two months to prove to him that diet could control my disease.  Otherwise he is going to start me on Cimzia injections.  I see him on January 11 and I am sure that he will not be writing a prescription.  :)

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