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Best medications for large and small intestine activity

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Crohn's Disease
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Posted 2/27/2012 2:39 AM (GMT 0)
My son was dx 7 years ago as a young teen, with mostly upper digestive activity. He started off on steroids and was on imuran and pentasa. 3 years ago he had clear scoping and his GI pronounced him in remission though reluctant to start weaning him off of meds till he finished growing.
Recently my son had a flair, new GI (adult this time) and was scoped, with the results showing activity throughout the large and small intestine. He's on prednisone now and the doctor wants him to go on some biologic like Remicade or Humira. He doesn't think Pentasa is helpful.

Does anyone have any input, or suggestions for further research before the followup appt. this week? Is there any way to avoid the biologics?

I should mention that the first time around we tried SCD a bit but it's not easy to hack and my son's not too keen on it now. Are there any other dietary approaches that might have some value? Thanks!
Posted 2/27/2012 5:32 AM (GMT 0)
I'm sorry your son has this horrible disease.
If Pentasa is helpful even a little, it's still worth it, in my opinion. I'll take anything that works, even if it's just a little.
Is he on a probiotic? That's probably a good idea. Many CDers find them helpful, but do go slow with them, as they usually cause detox effects.
If SCD is too hard, try temporarily reducing or eliminating sugar, dairy, and gluten. Take it one day at a time.
Hope he gets back into remission quickly.
Posted 2/27/2012 8:03 AM (GMT 0)
Hey cfs,

I want to second what Roni said above, and also discuss some of my personal experiences with diet. SCD has really worked for me, but man is it hard. The cravings for starchy, yeasty, warm bready foods go away/are reduced after a week or so, but the cooking all the time is what gets me. The lack of nausea, cramping, and diarrhea are well worth it though.

A really easy way to modify his diet is to go gluten free. There are more and more products aimed at those with celiac disease or gluten sensitivity, so it makes it easier to adhere to that diet. I would say to just experiment with various diets (low residue, sugar-free, gluten-free, diary-free, lactose-free etc) and see if anything helps. Good luck, and I hope your son feels better soon!
Posted 2/27/2012 10:52 AM (GMT 0)
My daughter is somewhat in the same boat as your son, and we are faced with the same recommendations.

She too was daignosed at 13 now 19. I personally want to avoid biologics. Even though there is good evidence as to their effectiveness, I still think they haven't been around long enough to truly get a picture of their safe use. 

Also, I can understand it if there's absolutely no choice, or, maybe your in your 30's or 40's, but teens?

The other problem is, what if the biologics run there course and your only 25, then what?

I don't think I've helped you make a decision, but hopefully you'll continue to get some different perspectives.

Posted 2/27/2012 3:25 PM (GMT 0)
My GI doc told me that the current medical philosophy is to be more aggressive with medications with younger patients instead of less aggressive. They believe that kids have so many more years to live with the disease than adults do, and they want to stop the disease from spreading and causing more damage, blockages, surgeries etc. I understand you reluctance to use the biologics, because I'm afraid of them too. Having the disease advance it pretty terrible too though. I personally think that diet modification helps with symptoms, but doesn't necessarily keep the disease from advancing. I know others disagree with me on that.....I have no idea if I'm right or wrong. My best suggestion is to read all you can and get several medical opinions, and then just make the best choice that feels right. My best friend has a son that has been on the biologics for the past 6 years, since he was 15. He has an excellent quality of life and was able to complete a semester abroad in Spain this year. I know he's just one person, but the biologics, (he is on Remicade) have made an enormous difference in his life. Good luck with your decision.
Posted 2/27/2012 4:37 PM (GMT 0)
I agree with gumby's GI's philosophy. People seem to be more scared of meds than of Crohn's, when really it should be the other way round. I've had Crohn's for 12 years and I'm living with the consequences of having failed to get it under control in the early years when it was mild. In short, if I had a child with Crohn's disease, I wouldn't hesitate to move them onto Remicade if need be.
Posted 2/27/2012 4:59 PM (GMT 0)
Remicade saved my life! It in my opinion is a miracle drug. I could be having the worst flare and as soon as I get my remicade I'm a new person!! One of my concerns with remicade is long term side effects since it hasn't been around that long to determine any long term effects. Correct me if I'm wrong. *hugs*
Posted 2/27/2012 6:08 PM (GMT 0)
If Pentasa helped him before there's a good chance it will help him again. Your doc should be working with you as a team, not dictating to you.

Tell the doc you want him back on the meds he was on before since those put him in remission....far as I know they are maintenance meds and many stay on them even while in remission in the hopes it will keep them in remission.

Best of luck to your son.
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