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Crohn's and different doctor opinions

I suffered with IBD symptoms for 7 years and was diagnosed by colonoscopy Dec. 2012 (26 years old). My symptoms were fatigue, stomach pain and urgent/frequent bowel movements (up to 20 times a day). I have never lost weight or needed trips to the ER. My GI said I had mild Crohn's (he wasn't 100% about the diagnosis) and put me on cholestyramine (Questran) packets (2-6 per day). I noticed a difference right away. February 2014 I had a small flare and had to try a few rounds of steroids. I was symptom free by May 2014. In December, I started to have symptoms again. I found out my GI left the practice so I saw a new GI doc yesterday.

My new GI doc reviewed my medical records and confirmed my diagnosis of Crohn's. He said there was no question. He has ordered a CT Scan and another colonoscopy. My new GI doc believes that my previous doctor was only "chasing the disease." He said that once my test are complete I can try another round of steriods or I can begin treatment with Humira or Remicade.

I was lead to believe that my disease was mild and my symptoms would not worsen. My old GI said I should try to stay with the cholestyramine as long as possible because once I moved up there was no turning back. On the other hand- my current doc believes you start with the strongest treatment and work your way down. He also said that if I didn't go into full remission I would have complications later in life.

My last two flares have been hard but no where near where I was before my diagnosis. I am at a loss- I don't feel my symptoms outweigh the side effects of Humira or Remicade but I also don't want to continue to cause damage.

I really don't know where to begin. Is there a middle ground for treatment options?
 

my little penguin

Moderator
Staff member
There are two theories step theory where docs give the weakest meds ( least chance of side effects but lowest chance of being effective ) and then slowly move up the chain of drugs .
But this can work for some but increases the chance of flaring , simmering imflammation and scar tissue .
The other newer camp is top down theory
You hit the disease with the stronger drugs early after dx to reduce the risk of surgery /damage to the gut thus preserving the gut as much as possible
Numerous studies in kids back up the top down theory with reduced complications.

As far as side effects -- and biologics
My kiddo was dx at age 7
He has tried
5-ASA ( pentasa ), 6-mp in lots of combinations , methotrexate , remicade and now is on Humira plus Mtx .

The side effects are potential meaning you may get some or you may not have any
But the docs job is to inform you of the the risks which should be way lower than the anticipated benefits of the drugs
Out of all the drugs DS has tried biologics have given him the least side effects
6-mp went to his liver and raised his liver enzymes
Methotreaxte gave him flu like sypmtoms for days following his shot .

The colonscopy can give you a better idea just how much inflammation/damage has been going on.
 
Welcome to the forum. Like MLP said, colonoscopy will give a better picture of what's going on. In my daughter's case, symptoms does not correlate with damage. She went from mild meds straight to biologics. No side effects so far and doing great.
 
Thanks for the help! I think my brain fried from so much information! He wanted me to do some research so I will continue that but I guess there is no use in worrying until the results are in. :ysmile: Thanks again!
 
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