Son in agony- Is this now his normal?

It is hard for a doctor to measure what will help and what will harm a patient with this disease, because of what can happen with the big guns with this disease. I have to admit I think your caring about your son is wonderful. But as we have all said crohns is incredibly individual disease. If your son can play golf and work, and be rather caviliar with taking his meds, then he really probably does not have that bad of case of crohns. But one also wants to feel normal, and that is ok too. You learn what you can and cannot do eventually, but sometimes it takes a hospital stay or a surgery to wake people up.  Most people that age drink and golf at the same time so I am wondering if that might of contributed to his bad spell.

The reason why we harp on not missing meds is because crohns meds can take months to reach an effective level in the body, for me it is about 3 months. This is not take a tylenol and feel better in a couple of hours, this is take meds for months and hope you feel better in three months. Then it might not even work, but one really needs to give it months. In the meantime one is suffering alot. I went for years going between 30-40 times a day, because I had a hard time finding meds that worked for me. That is why crohns patients are so fanitical about taking meds, is that it can take months to get better.

Unfortunately it might be his new normal, but there are things he can do to minimize his pain. Such as regularly take his meds, even if he feels pretty good. If he is on a oral med that is really not considered a big gun. Unfortunately this is a disease that can silently advance, and it is always a good idea to keep a regular eye on it. Keep in contact with your gi, like make sure that you have a GI that will call you back within 24 hours.

What does concern me that your son maybe heading for years of steriods if he is going on with just using pred, as his main crohns med.  I always think a second, third, forth, fifth opinions is a good idea, when you have a chronic illness.  Especially to get him off long term steriods.  I was on 80 mg of pred for more then 3 years, and it does have health side effects.

I have a stupid question why did they prescribe him colozol? That is more a UC med then a Crohn's med, but if his disease is in his colon rather then small intestine that makes sense, but I am assuming that he has gotten a long EGD (18 foot one) or a pill camera to confirm that? (Granted Aza. and pred. are crohns meds, but it all goes back to the quality of life issue that I spoke about in my first post.)
That is in part why I am thinking another opinion is just a safety thing.

A normal life is always a goal, but this is a highly individualized disease and what works for one person may not work for another.

Once you get into the anti-TNF meds, there is more gambling involved, because your son could be one of the rare few that have the lupus like reaction to it, or other such side effects (there was no way I could work when I had the lupus stuff going on). Hence why it would be a good idea to try it when he does not have to work, if he wants to. But the thing is for some these are life saving medications, it really depends on what the patient and the doctor feel is the best path for the patient.

I've always been confused about my Daughter's IBD meds. Her diagnosis was definite Crohn's/Colitis. For the first 4 years she was on Pentasa with Rowasa enemas and Prednisone thrown in from time to time. When none of that worked it was on to Remicade, Imuran and Asacol
which she has been on the past 7 years and that hasn't been working all that well (the past 2 years) even at triple doses of Remicade. Her GI just is not ready to move her on to something else and not sure my Daughter has her mind wrapped around Humira injections yet. For some reason she fears injecting herself even though it is holy bloody murder trying to get an IV into her non-existent veins for Remicade infusions.

Crazy disease! Each patient is different and each GI has his own take on what meds a patient should be on with opinions differing widely. It's like one big trial and error crapshoot!! No pun intended!

emptynester,

Crohn's disease is unpredictable.

It is not a realistic goal for you to expect your son to feel normal again (like before he got sick) just because he takes his meds faithfully. Chronic illness means that there might be some normal or better times and there might be some worse times.

Likely, your son might live a "normal" life at times, and sometimes it won't be close to normal. He may be able to work his whole life, or he may have to go on disability for a time or even permanently. Diet, meds, or surgery doesn't predict with accuracy what will happen with the course of the disease.

Your son can do all the treatment perfectly and he could still be just as sick and even get worse. Treatment, diet, surgery usually help, but not always and a doctor can't say for sure who will be the sickest or the healthiest.

The idea is to try and manage the disease by reducing symptoms and inflammation and trying to put the disease in remission. Sometimes, the crohn's doesn't ever go into remission no matter what the treatment. Sometimes it goes into remission for years with treatment and a person can then live a mostly normal life.

I know of people who live a mostly normal life with diet alone, others with meds alone, and in my aunt's case, no diet restrictions or meds at all. She had a surgery and hasn't been sick since. I had surgery and got sick within weeks. It is not the same for everyone. It likely depends on the severity of the disease at the time, I guess.

Hopefully, your son's disease will go into remission and never come back. Most people with CD don't get this though, which is why most of us don't sound more optimistic for you. Sorry.

Best wishes for you and your son.