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19 year old with crohns

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Posted 7/30/2009 9:53 PM (GMT 0)
Hello

I have a 19 year old son that was diagnosed with crohns at the age of 14.  He was put on Humira a little over a year ago and was doing quite well.  He went off to college last fall and I thought he was doing fine.  He has a high tolerance for pain and does not always communicate that he's not feeling well.  He has been home for the summer and has been in a month long flare up.  Do flare ups last that long?  He had an endoscopy last week and the md put him on prednisone and azithiaprine as his crohns has now spread, and the Humira was not working for him.  He has been vomiting and he has lost 15 lbs.  He is 6 ft and weights 123lbs.  I spoke to his md yesterday and he took him off the azithiaprene.  He is currently trying to get a prior authorization for a new med called cimzia.  The md told me that he now has crohns in his stomach.  I always ask his md if my son should be on a special diet, he tells me know.   I am very concerned with the weight loss and the general feeling of him not feeling well.  What are some good tasting shakes that he could try.  I am at witts end here.  He is suppose to leave in less than a month to go back to college.  He also claims that smoking pot helps him.  Does anyone know if that is true.

I need support.

Posted 7/30/2009 10:25 PM (GMT 0)
Hello mom...welcome...
to answer some of your questions...not to scare you, but flares can last from as long as a couple of weeks to years...remission is possible and probable, but you can never know how long. Even during a long flare, some days are better, some are worse.

As to the Cimzia...decent medication. I'm on it, for about a year. Injections only once a month. All the medications listed...normal, if you want more info, Ivy has threads about meds linked to here signature.

I have Crohn's in my stomach too...I have been on PPI's for about 6 years or so. I also take phenegan for the nausea associated with the bad stomach issues. It helps me keep food down (sometimes too much)...I make sure I take extra supplements, cuz both the steroids, and the PPI can create absorption issues, not to mention the issues involved with the disease itself. Low residue diets help some...as do the makers diet, SCD and others. Probably with the stomach issues, High fatty foods (such as Pizza, double quarter pounders, anything else fried) won't sit too well as well as highly acidic stuff such as grapefruit, oranges. Apple juice always tasted good and sat well for me.

As to the diet thing...your son has to do what is best, and feels best. He can try many things...protein powders, or even look into stuff that Chemotherapy patients take to keep on weight. As to the other thing your son uses...alas, on this forum, because it is a family forum...I'm sure some of the moderaters will inform you, cannot be discussed here.

Oh...I like the Kashi "Go Lean" shakes. Mix them up with some soy... Yummy!
Posted 7/30/2009 10:28 PM (GMT 0)
ther isn't an exact diet he should be on. certian things work for certian people. sometimes more fibre helps and sometimes it cuases it tobe worse. I know that if you eat your meals slower instead of at your regular pace it helps the digestive tract keep up. ( this will help the weight problem becuase it will give his body time to absorb the nutrients needed) as for shakes to try, if he wants oent hat doesnt taste too bad i would say to try Resource. I am on that one and it just tastes like a weird vanilla milkshake. um as for the smoking pot idea... yes i would guessit would mask the pain but as for doing it in general... i wouldnt it will probably end up cuasing more trouble in the long run
Posted 7/30/2009 10:33 PM (GMT 0)

The official word on marijuana from the Crohn's and Colitis Foundation is: 

"Today, patients have access to more medications than ever -- medications capable of controlling symptoms and dramatically improving quality of life. CCFA's expert consensus remains: The harmful side effects of marijuana far outweigh its potential benefits. In other words, until a new cannabinoid-based drug comes to market, don't go there." http://www.ccfa.org/about/news/medicalmarajuana

The following link takes you to interesting quotes from research both pro and con the use of pot: http://medicalmarijuana.procon.org/viewanswers.asp?questionid=000138 

You could try the introductory version of the SCD diet for a week or so and see whether it helps. More info at www.breakingtheviciouscycle.info

Posted 7/31/2009 3:14 PM (GMT 0)
In essence, a flare up means your out of remission.  The time frame for that varies from person to person and flare up to flare up.  There's a 19 yr old gal in my Crohns support group who just had a baby.  She did really well throughout her prenancy (on Remicade) and after the baby was born, she came out of remission and is having a hard time getting it under control.  My last flare up lasted almost a year before I finally got it under semi-control.  I hope he can get on top of it soon so he can start feeling better again.  yeah
Posted 8/3/2009 10:29 AM (GMT 0)
While it doesn't get rid of a flare, I find that eating certain foods helps relieve some of the symptoms. Spaghetti with Mozarella Cheese melted on top is good for me. My "band-aid" food won't work for everyone. Try to experiment a little and see what helps.

If your son is drinking, try to have him stop. Many people have some mild bowel problems with alcohol- and these are usually amplified in Crohnies. Same goes for caffeine. Also, I'd recommend getting your son to do a little research about Crohns on his own. I find it mildly irritating when my mom comes up with crackpot ideas on how to make me better. Especially when they work.
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