Hi Mom - sounds like things have been kind of hairy and scary.
Glad you found Healingwell - you'll get lots of good advice and your son will too, should he choose to check it out.
It is interesting that the GI wants to put him on 6-MP when, as far as you know, there is no firm diagnosis. But you are correct that there may have been tests run that you don't have info on that have led the GI to believe it's Crohns. And there can be a characteristic appearance to the small bowel especially when it is classic Crohn's that may have strongly suggested that diagnosis.
To try and answer your questions:
Yes, it is most likely that he feels good because he is on prednisone and a low res diet is helping too. But most likely it's the pred. It can make you feel Grrrrrrrrrrrrrrreat! even when you're really sick.
If his diagnosis is Crohn's, given that he presented with a bowel obstruction, I would say that 6-MP is not a drastic response. Much better than losing 12" of your small bowel.
6-MP takes up to 4 months to be fully effective for CD - if it works for him at all. That's why the GI wants him to start it now. The chances are good that your son may be on pred until the GI feels it is time to wean and see if the 6-MP is working. This means your son could be on pred for 2-3 months or longer.
Pred is actually much more likely to give him dangerous side effects than the 6-MP or a biologic like Remicade. That's why GI's go to immune modulating drugs so quickly - they want to minimize the time he's on prednisone. And once you've been on high dose pred for more than 10-14 days you must wean off it very slowly and it can take several weeks.
Is there an alternative to 6-MP? Sure there's always alternatives depending on what you mean.
The most obvious alternative (to me) is for your son to go on enteral feeding - only liquid formula and water by mouth. No solid food. You can use Boost or Ensure or a prescript
ion formula. This can be very effective short term to bring about
remission. He may have a lot of improvement in his symptoms in just a few days but would need to stay on the formula for several weeks. Like anything, it works for some and not for others. Most people who do get into remission this way seem to need a med like 6-MP on board to keep them in remission. Then they use the liquid diet to treat flares as needed.
There are other things he could try - diet plans like the SCD diet, chinese herbs, LDN (an opiate antagonist that is in clinical trials but is being prescribed by some doctors off label for CD) to name a few. If he's seriously interested in those other options I would do a separate post asking for info from people who've used them.
Crohn's is not "hereditary" but there does appear to be genetic predisposition that makes some people more vulnerable than others. That said, most people who get IBD don't have close relatives with CD. But you do have a higher risk of being diagnosed with CD or UC if you have close relatives with that diagnosis. My son has CD and no one on either side of the family for as far back as we know has had IBD of any kind.
Yes, Crohn's can present with a severe flare like this and then go into remission without treatment. It's very rare but it does appear to happen. Whether he will go into remission - no one can tell you. How long the remission will be - no one can tell you. How "sturdy" the remission -no one can tell you.
If he has CD my opinion is that he needs to be on maintenance treatment of some kind. Even though the disease is "in remission" doesn't mean it's completely gone. CD tends to be like a banked fire - the coals may get a covering of ash and you may think the fire is out when really it's just quietly smoldering and a small change will bring the flames back strong.
When CD quietly smolders it is causing damage - sometimes really severe damage that results in abscesses, fistulas, obstructions or perforations. There are a lot of folks who will tell you they thought they were fine - right up until they weren't fine and had emergency surgery.
The latest research into (traditional medical) treatment of newly diagnosed moderate-severe CD has shown that immediately hitting the disease hard with meds (the "top down" approach) appears to bring about
a solid remission more quickly than the traditional/conservative "step up" approach. And, statistically speaking, those who have gotten into remission quickly like this may be able to reduce their medications and stay in remission better than patients who took longer to get into remission.
Hopefully your son's GI has a lot of experience treating CD. If your son is uncomfortable with the GI's recommendations or he feels that he's not getting good care then he should seek a 2nd opinion promptly. Preferably at a teaching hospital or medical center with an IBD Center that specializes in treating people with IBD.
Best wishes and keep us posted on how he's doing.
son now 14 1/2, dx CD age 10; current meds: MTX and omeprazole; previous tmts: pred, 6-MP, Humira, entocort, GMCS, exclusive enteral feeds, pentasa, mesalamine enemas, cipro, flagyl, many topical treatments for perianal disease
Post Edited (rlsnights) : 12/5/2010 1:34:38 AM (GMT-7)