I've heard of this but I do not have experience with it. I think the docs that do that feel, why screw around trying out therapies and possibly wasting time if the pt is REALLY sick and just go right to the big guns.
If you are not comfortable with it, is a second opinion an option? Good luck to you. Just wanted to offer my support.

I'm on Remicade and Imuran and worried about the side effects but I've had a few blockages that have landed me in the ER and I'm trying to avoid surgery at this point. I have CD. I would get a second opinion like Akie suggests.

Well, if it makes you feel any better, the steroids and other drugs typically used to start Crohn's treatment have ugly long term side effects as well.

Doctors don't know what causes this disease and as a result treatment is purely a guessing game. They are going to throw a drug at it, then stand back and watch with their fingers crossed and hope that it has a positive effect. If it doesn't, they will try another, same routine. I supposed that it doesn't matter what order they do it in, Remicade just seems to be an expensive option so they leave until after the less expensive ones have been tried.

That being said, ALWAYS get a second opinion! Seek out other medical professionals, I always recommend one in another type of medical practice such as Naturopathic, etc so you aren't stuck in the same tunnel of thought. There are many other options out there.

Good luck!

Yes, i plan on getting a second opinion hopefully soon. Her primary MD has to send a referral and i have to wait until Monday for that, so hopefully we can get in next week, fingers crossed. Thanks for ya'lls input...i'm from the south, can you tell?

Homework is the key to treatment. I was in the hospital with severe pancolitis UC for a month. The surgeon wanted to remove my colon because I wasn't responding to standard treatment in the time frame they thought. NOT! It has been a year and I am still not in remission nor at theraputic levels of current medications and Remicade will be my last resort before colon removal. We all have our own opinions. I personally want to use the least amount of medications (start at the bottom and work up). I have cancer everywhere in my family also and it makes me nervous because I am on Imuran (takes a long time to get into your system so for 9 months I was on prednisone along with the Imuran)and cancer is a risk with this medication. Remicade has mice proteins that you can become allergic too and prevent you from ever using it again.
There is so many combinations of medications that Remicade is expensive and is not effective for everyone. Has your daughter taking Pentasa, Prednisone, Asacol,enimas, Humira? There is many other options besides Remicade and I do believe homework and staying in control of the treatment with the doc is the key. Good Luck

You will want to do some reading. My doc says there are 2 schools of thought regarding treatment of immune diseases like CD/UC, the "top down" and the "bottom up" (no pun intended). In top down, the docs try to obtain remission by slamming the immune system down with the big gun drugs, currently remicade & humira. It tends to get stunning results but the drawbacks are the extreme cost of these meds, and the fact that they are loaded with nasty side effects including causing lymphoma in some patients. Also in the case of remicade, that stuff has a mouse protein in it--when your body eventually realizes the mouse is in there, it makes antibodies to the remicade & you are back to square one, ie it stops working for you.

The reason docs like to use top-down on kids is, kids are notorious for not complying with taking their meds. They want to be like the normal kids, they are self conscious about taking out the pill bottle at the lunch table, they are in denial, they are busy & they forget, etc etc. Doctors hate to see children burdened by these diseases and they want to give them back as normal a life as possible.

Most of the meds for UC/CD are a bunch of pills that have to be taken at regular intervals during the day--I am taking 2 big Pentasa capsules four times a day, and also an Imuran first thing in the am. Others are taking iron & such as well. Children & teens have a record of forgetting to take all their doses, or skipping entire days or weeks once they start to feel better. This is not a disease you can do that with. It's like diabetes---you have it all your life, and you have to take your meds all your life in order to suppress the symptoms. There is currently no cure. So if your meds make you feel better, they are working & that is great, but you are not cured & you cannot stop taking them! They are keeping your symptoms from popping back up & making you wretched again.

In the bottom down school of thought, docs treat the disease with the mildest, least side effect-causing meds first, and see if they work. If they do for that patient, they stay with the regimen until that person no longer has success with it. Then they ramp up to the next level.

The advantage to bottom up is it saves the big gun meds for later, if & when they may be needed. And if that patient can "get away with" a med or combination of meds that cause few or no side effects, maybe even use that combo for years, you have won that bet. And you may even be able to put off taking the nasty stuff like remicade for 30 or more years.

Every patient's case is different -- some can use only a few asacol a day for 20 years---some can't even use it for a week. And the disease attacks different locations in your gut, too--from patient to patient, and within one individual's body over the course of a life. So different meds will be suitable at different times of your life.

You have to remember, too, that the makers of remicade are putting an extraordinary amount of pressure on doctors to go with the top down philosophy. They spent a fortune developing that stuff and they want to recoup their costs. They don't care if you give it to your cat---as long as it is being pumped into as many veins as possible, that' s what they need.

If she is torn up in there, have you tried a very very mild & gentle diet? To keep the abrasion down---as little roughage stuff as possible, fruits from a can & not fresh, white rice, Jellos & puddings, chicken breasts, bananas, etc? To give the tissue a break from the fibrous stuff going through.

I hope your daughter improves!

Goofycats, this was alot of good information. I am trying to do the blander lower fiber diet, although i have to admit i am concerned about her nutritional status. She is on a bunch of vitamins, but even i know those aren't absorbed like nutrients from food. Right now she is very adherent to the pill schedule basically because i dole them out to her and I'M in control. Then again she's only 9 and i know that won't last forever. Her labs showed her protein and albumin status was on the lower end of normal. She's so skinny, when i thought it was just her body type, it was fine, but now i think it has alot to do with the UC. And now when i look at her bony chest, it makes me sad. Anyway, thanks everyone for the replies. Btw, the doctor basically said that if you comply, you can control this disease, but i can see in children how that can be difficult, esp in teens. Thankfully my 13 yo isn't dealing with this.

I had moderate to severe Crohn's back in 2004. I was started on Imuran and 60mg of Prednisone.

I will never take Prednisone ever again. It worked for a while but it thinned my bones and I have Osteoporosis now because of it. It also made me suicidal, something I had never experienced when I tried to taper off of it. It's a scary drug. If steroids are the specialists choice, Entocort is a milder form which has less side effects.

I am taking Imuran and Remicade now and I'm much better. I do recommend taking Omega-3 fish oil and probiotics.

Hopefully your daughter is feeling better now.