Let The Fun Begin

[big.RHONDA]

It's been a long time since I've been to see a GI specialist for my stomach. I was not happy when my last doc told me that Remicade was my only option, so I didn't go back to see him. I started undergoing homeopathic therapy, which was successful for the most part, but I could not afford to finish the treatment. My stomach felt fine for a while, but about 6 months ago it began a steady turn for the worse.
First, I lost my appetite. I almost always have some mild symptoms of crohn's- diarrhea, the biweekly tummy ache but I generally just slept through it and adjusted my diet for a few days to get through. A few months ago, when my weight loss really began to show and I started having nightly pain, I went to my family doctor to get a new GI referral.
I saw the new GI doc for the first time a few weeks ago. She was quite worried by my symptoms, especially my weight loss. I've lost 20 lbs in the past year... now I weigh 95lbs. My stomach hurts every day, I can't eat full meals but the pain is never extremely intense... more of a minor annoyance. I usually wake up early in the mornings needing to poo, and these days my butt's been getting sore from seemingly endless diarrhea.
I've got a lot of stress in my life right now, my grandma (also my landlord) is sick, hospitalized and losing her mind to dementia and I have to move out of my house, and things aren't going well with my relationship... so obviously this isn't helping the stomach situation at all.

So I left the doctors office with a stack of papers directing me to my various tests: stomach ultrasound, chest x-ray & TB skin test [for remicade], blood tests, upper endoscopy and colonoscopy.
I've done this all before, once when I was first diagnosed and again when I was in the hospital exactly 2 years ago. But this time I'm an adult, they don't put yummy flavors in the drink mixes and they don't put you to sleep for your colonoscopy and they dont bring you heated blankets. Its a lot scarier to do all this as an adult. You would think that as you grow up, you would get used to the hospitals, the sickly clean smell, the needles and the waiting rooms...

but now they all terrify me!!
I don't know what it is. I dread the doctor's office. And the tests aren't going very well. First, I had the ultrasound.
They found a chunk of my intestines is very very swollen, the opening is about the size of a pea. For someone my age (19) this is apparently pretty bad. So the ultrasound doctor told my doctor to make sure that I take treatment. [i am notorious for refusing treatment...]
So back to the doc, and she gave me a prescription for prednisone [yay here come the insane munchies and balloning up like the michelin man, although it would do me some good right now...] and the number for the remicade coordinator.

Why is it that all my docs suggest is Remicade? Damn! I hate needles! Especially after the blood tests i just went to.
They took 9 vials of blood. Thats a lot, but not too much, I've had more taken. I used to have to go get blood taken on a weekly basis. I was always nervous about it. They used to give me numbing cream, because they could never find my veins and used to have to stab around in my arms like deaf woodpeckers.
This time, I started to feel strange as she was drawing the last vial. I was about to say "I feel lightheaded"
Next thing I know, 2 ladies are holding my head, i'm hunched over, drooling on the floor and trying to pull the gum out of my mouth. I could hear what was going on but i was too weak to speak. They laid me down for a half hour and gave me some water. [I was thinking, DAMNIT WHERE IS MY JUICE!? Aren't they supposed to give you something to bring up your blood sugar?]
So that was interesting, I've never fainted before.

BUT I SURE AS SHIZA DON'T WANT THEM HOOKING ME UP TO AN IV INFUSION ON A WEEKLY BASIS.
i'm sure lots of you have tried remicade, how does it make you feel? I didn't like taking Imuran because I got sick all the time.
Wouldn't remicade just be worse?
I would rather have stomach pain than be sick with a cold any day. Seriously. At least I know how to deal with stomach pain. not to mention the IV.
The Single worst thing I experienced in the hospital was the pain of my IV. They had to give me one of those pain dose buttons because it hurt me so bad. Once they put a pick line in, I had fewer problems, but they put it in near my wrist, so it was very uncomfortable in my elbow joint.
I told my doctor that I didn't like my last doctor because he said Remicade was my only option, but here I've got her saying the same thing!!
Is there really no other option? What can I do?
My cousin was diagnosed with crohn's, but then they discovered his problems were entirely allergy-related. I doubt if that is the case with me, But it's like my doctors refuse to look in any other direction.
I know my stomach is bad, and I need to do something... but I'm scared.
Is Remicade really as bad as I think it is? Do you get more infections & sicknesses when you're taking it? And why does "maintenace therapy" have to be such an expensive deal?
And they say canada has free health care...

I have a colonoscopy scheduled for this friday. I have done this twice before, I know what I'm in for. I haven't started the prednisone yet.. I'm not in any position to pay for prescriptions so I dont know how I'm supposed to pay for remicade..
But, hopefully somebody, somewhere can give me some good news.

 

[kello82]

because they could never find my veins and used to have to stab around in my arms like deaf woodpeckers.

first of all, that made me laugh. youre funny!

allright ill try to address your worries.
hey im 19 too btw. though i was dx 10 years ago, i totally feel the same way about being in the adult medical care vs ped. no heated blankets, sweet doctors, fun picutres on the wall etc, i know! the switch is hard for me too, i miss the kids places.

anyways, i have been on remi and it was the BEST years i have had with this disease. you hear that? the best. ive never had remission, but remi relieved my symptoms better than anything else did. i stopped taking it as it sometimes loses its potentcy over time.
no, its not as scary as you think it is. im not meaning to sound...er...belittling? of your concerns, if thats the right word. the severe reactions and side effects are few and far between and keep in mind that side effects are warned of only because it means somewhere someone had that happen to them WHILE they were taking the drug. it doesnt necessarily mean that the drug caused the problem. if it happens to one person, they have to warn about it to protect their butts from lawsuits.
the infusions are not too bad. its about 3-4 hours in the middle of the day that you get to rest, take a nap, watch tv, have a chat and a snack....i came to enjoy them very much and so do a bunch of people on here! theres a thread allllllll about remi here:
http://www.crohnsforum.com/showthread.php?t=4544
as far as the issues with needles, i have problems with my veins a lot too. they come at me with the damn thing and i say noooo you dont wanna go in that one and they try anyways, leaving me with a poofy blue bumpy arm.
try your best just to speak up and ask for an iv specialist. ive found it helps a lot if they can give you a little shot of local anesthetic into the site right before they attempt, they have a better chance at threading the needle cause they can wiggle around a bit better and you dont feel it at all.
hopefully, as do most crohnies, the needles wont be a big deal after a while. we tend to have a lot of them and compared to the crippling pain that your intestines can throw at you, a tiny pich isnt too bad right?

as far as treatments go, remi is a drug that is more well known now. there are new drugs out there that are experimental and have freaky side effects that patients take casue they have no choice. with remi, many people have been on it so the medical community is well prepeared now should a rare reaction happen ok?
it is so worth it if it makes you feel better.
do what you can now to help your body heal!
i just had surgery a little over a month ago after failing every medication. not trying to scare you but surg ends up being a very real possibility, so do what you can!

here, i had posted this in another thread concerning meds and sides effects of someones son, i thought of it and went and found it:

i was bored today and actually read one of the pamphlets that lists all the warnings and things that the pharmacy gives you with your prescription. anyways, this sentence caught my eye:
"remember: your doctor prescribed this medicine for you because he/she has judged that the benefit of it outweighs the potential risk for side effects."

to me that pretty much sums it up. if the medicine HELPS improve our symptoms and quality of life, then it is worth the risk as far as side effects.
look at it with numbers:
the med is working. so it has a 100% chance of making us feel better. the risk for a side effect is lets say 1 in 100. 1%. should we really throw away our 100% chance of feeling better for the 1% chance of side effect? then we have a 0% chance of feeling better with a 0% chance of side effects. our chance of feeling better goes down 100% while our chance of side effects only goes down 1%. not exactly equal. one definitly outweighs the other.

i really hope that made sense.....

whew, i hope all that helps.
lol my post is probably as long as yours but you had a lot of questions.
good luck keep us updated ok?

 

[big.RHONDA]

Thanks a lot for all that info!
reading the remicade forums has definitely cleared up my worries a little bit. I'm still a little hesitant but it can't hurt to at least try it.
I'll keep ya posted

 

[Kittee]

Remicade is great. As long as it works for ya. Don't stress out too much about it. You only have to go weekly, bi weekly, once a month - Once. Then you stretch it out to 8 weeks between infusions.

I like my infusion days, I take off from work and relax!

 

[kello82]

just out of curiousity--big rhonda, does your login name have anything to do with That 70's Show?
lol there is a girl they call Big Rhonda on there......

 

[big.RHONDA]

Yeah actually!
Big Rhonda became my nickname out of the humour that she is a huge fatty blonde chick, and I'm a teeny weeny blonde chick! lol

 

[kello82]

hahaha!!! lmao i love it!
i was so scared that you would be offended....like by asking i was assuming you were manly big rhonda LOL
hahah im glad its just a funny nickname

 

[jed]

welcome Rhonda