Agree that GI may make more of an impact.
But, some things you may discuss with your son...
- he is not choosing 'risk' (from meds) or no risk (from diet, etc.). What he is choosing is risk from meds or risk from un- or undertreated crohns. As sad as that may be, that is the situation we are in. If he chooses risks from meds, he will be monitored and treatment will be controlled by his GI who is experienced and knowledgeable about the medication and side effects. If he chooses risks from un- or undertreated crohns, he will, himself, be taking responsibility for his care (to a large degree). While he will still be monitored at follow-up apptmts, etc., the real monitoring will only come once symptoms become apparent from increasing activity, symptoms or damage from his crohns.
- I don't have stats to share which compare the different risks, I do know one of the greatest risks from remicade, which scares all of us, is the cancer risk and the cancer risk is very, very small. The risk from untreated crohns can be permanent damage (ie scar tissue that can only be fixed through surgical removal of that area) or, possibly, bowel cancer (although I don't know how common this is??). However, even surgical removal of a section of his bowels can leave a permanent impact on his life.
- Does he, or did he, play any sports? Does he drive? Has he ever had sunburns? Does he go swimming? etc., etc.... All of these carry risks. But, no one is researching the stats on those risks? Even if he did, he likely wouldn't stop doing these activities because he enjoys them, they improve his quality of life, etc. Moving ahead with the best treatment for his crohns will provide him with the same benefits. It's true that the average person doesn't need to take on the responsibility or risks of meds to carry on a normal, healthy lifestyle but, unfortunately, this is the hand we (our sons) were dealt and we have to manage it to take our (their) lives to an optimal level.
- I also stressed to my son that NO ONE has the perfect life. We all have our strengths which give us certain advantages (whether that be intelligence, personality, athletic or artistic ability, etc.) but we all have crosses to bear as well. I told him he has to learn to manage his 'crosses' and be grateful for his advantages.
- Specifically to remicade - he will not become 'dependent' on remicade in the sense that you become addicted or dependent on other medications. However, because he has crohns, he will be dependent on some sort of treatment.
It is true that once starting remicade, it is not advisable to stop since you may develop antibodies to it if you stop. And, then, when/if symptoms return and you need treatment again, you will not be able to use remicade again. Perhaps this is what he is thinking when saying he will become 'dependent' on it.
- re EEN (peptamen) vs. steroids - there are no risks with EEN and he is incorrect in saying 'it is not good for him'. EEN is the only safe, risk-free, way to attempt to achieve remission. It not only can help achieve remission but it provides all necessary nutrition and has healing qualities (which steroids do not).
- my son has been on remicade for two years now... he has had little to no side effects. The greatest negative impact it has had has been scheduling; and, honestly, even this has been a small impact. It does take a bit of planning and forethought (ie planning vacations, etc.) but, because I very much plan ahead and around his infusion schedule, it hasn't been a huge problem. However, this 'problem' can be somewhat alleviated by using humira (another biologic) as it is self-injected, so does not require you to plan around infusions. (But, the injection is quite painful and becomes the responsibility of the patient to stay on schedule!)
Perhaps, you can discuss these points with your son but then ask your son to discuss the issues with his GI so that the information/opinion he is getting is from the GI and not only from you. When I have a concern/question, I explain what it is to my son and then ask the GI in front of my son - my son and I then know whether or not my concern was valid and what the appropriate action should be. There have been times I haven't been in complete agreement with my son's decisions, however, he was also 18-20 years old, and once I knew he was aware of the choices and consequences, I believed they were his decisions to make. I could no more see the future than he could and I knew he was making his decision with information given to him from his GI (although I certainly included my opinion!
).
Good luck!! Every age brings different challenges to us parents! :ghug: