Son dx with severe crohn's

[Momto4boys]

son dx with severe crohn's

Hello
My son was dx with crohn's disease in 2007 at that time it was a mild case. He was started on 6mp, Pentassa, ATBs, and prednisone. He did ok on these medications, but as he got older he became non-compliant with the blood work for 6mp and was doing ok, so he was taking off the 6mp in 2009. Well 2 years later he looks great on the outside; very little abdominal pain, no wt loss, only 2-3 BMs a day, well inside is a totally different story. He has inflammation throughout most of the intestine they had to use a pediatric scope for the colonoscopy due to the inflammation and had to stop at a certain point because they could not get the scope in any furthur. They also found a few polyps they are biopsying.
His doctor wants to started him on steroids, ATBs Cipro and Flagyl and wants to start Humeria. I AM DEATHLY AFRAID OF THESE DRUGS DUE TO THE INCREASE RISK OF LYMPHOMA.
I have decided to take him to the Cleveland Clinic and getting a second opinion.
Has anyone decided not to do the Humeria Remicade route who has severe Crohn's disease . ANY ADVICE GREATLY APPRECIATED

 

[mikeyarmo]

Welcome Momto4boys!

I am sorry to hear about your sons diagnosis. I had surgery before Remicade was an option, so I can not give you personal advice on that.

Any more aggressive drug has it's side effects but at some point you need to truly consider what other options exist. Many people try changes to diet and lifestyle (i.e. stress) to control their disease and this is fine as long as you are responding positively to the changes. It is fine to keep searching for other options for your son as long as he is willing to keep up the search. I personally attempted to stay away from surgery as long as I could, but eventually I was 95 pounds at 19 years old and the doctors said enough was enough.

I hope you are able to find the answers to your questions on the forum. Best of luck to you and your son.

 

[RFarmer]

Hi Momto4boys!

Welcome to le forum! Do not be deathly afraid of drugs! There are drugs for that!

No but seriously, don't freak out too much.... I'm on humira. No lymphoma. Of course, it does increase your chance.... BUT, would you rather your son waste his life being sick, as opposed to living happily with a small chance of lymphoma?

But yeah, welcome to the forum Hope you find what you need.

 

[Lydia]

One thing to consider is that active crohns disease is also a risk for cancer; colon cancer. Its hard to choose, but when the flare is severe what else can you do.

 

[DustyKat]

Hi Mum and :welcome:

You have been given great advice so I can't really add to it. You have found a fab place for support and info so I hope you stick around.

Unfortunately when you reach the severe stage I think the big guns tend to be rolled in an attempt to bring things under control quickly and keep you there. As others have stated, crohns at this stage can create serious problems in it's own right and another that loom on the horizon is surgery.

I know this is an awful, awful situation for you to be in, I have been there myself and as I moved from one setback to another with my son one overwhelming fear was replaced by another. No one, whether it be carer or sufferer, should have to be faced with such heart wrenching decisions but we are.

I hate to say it but I guess it will be only be a matter time before the symptoms start coming to the fore and in some ways it is easier to make the decision when this happens. Ask your docs all the questions you have and weigh up the pros and cons, seek their advice and input and go from there.

How old is your son?

Dusty. xxx

 

[Momto4boys]

Thank you everyone, all of you have given me comfort and reassurance. My son is 20 yrs old and not the most accepting of things. I have noticed since the dx he has become depressed (Who could blame him) and of course anxiety is a big issue . Has anyone found taking SSRI (celexa, zoloft) and or Xanax help with both the depression/anxiety and crohns?