Posted 3/5/2014 9:27 AM (GMT 0)
Hi Tanya,
I'm very sorry to hear of your son's diagnosis. I know all to well the feelings you're dealing with right now. It truly is a parents "worst nightmare" indeed.
Before I get to my Daughter, I think you're absolutely doing the right thing. In hindsight, I wish I would have chosen the top down treatment approach that's getting more and more popular now. It's a guessing game to some degree trying to predict the course of this disease. In the beginning, I think it's natural to hope for a mild version of this disease and therefore a simple treatment.
The problem is, if you're not using an effective treatment, the disease is raging, often silently, out of control, doing serious harm.
My Daughter has now been on Remicade and Imuran for about 10 months now. We were extremely nervous in the beginning, but now have accepted that this is a necessary route that had to be taken. She's made significant improvements. She seems to have no apparent side effects. Our GI feels she's very healthy, but doesn't want to do any diagnostics until after 1yr. of Remicade.
Prior to starting Remicade, she had many fistulas, and an increasing stricture. All of this was due to being under medicated. I can't help thinking that if we had of gone to Remicade in the beginning, she would actually be much healthier now, and without the permanent damage she has. Of course, 7 years ago, Remicade was a very scary option. It's image has softened greatly now, and while I don't think that any of the biologics will ever be considered as harmless as an aspirin, the longer they're around without serious issues associated, the easier the choice will become.
As far as the mental side. I think that it pretty much takes care of itself. When feeling ill, a young person in particular, will naturally feel mentally and emotionally drained. As soon as he starts feeling really good again, that will all subside. I would worry about that part the least.
Only thing I would be concerned with is the blockage. Have you had an MRE or some other diagnostics to see if it's a stricture or just inflammation. Being very early on in the disease, it's very likely inflammation.
It's easy to second guess. Who can predict? As a Parent, you do the best you can. With your knowledge of this disease, you're going to be a tremendous asset to your son.
I hope I've helped put your mind at ease. With the advancement in medications, and more coming out, you're son has so much to feel hopeful about. Don't forget that 10yrs. from now, there may drugs that are significantly better than Remicade and Humira.
Just curious, why are you choosing Humira over Remicade? We were given the same choice of course.
Good luck Tanya, please rest assured that your son is going to be fine. He will conquer this disease, and go on to have a great life.
Please keep updating,
Tom.