Parent new to the forum

[litebody4u]

Geez. After reading a bunch of posts, I feel like my son (age 25) and I have been luckier than most. Even that is some kind of relief.

Mark was diagnosed quickly with Crohns after a colonoscopy when he was 21. This is an age when a young adult is trying to figure out where he's going in life, in college, in work. But he's sick a great deal of the time. He has not been able to finish his college education, but has been able to keep a part-time job. He's been hospitalized multiple times with surgery on his colon and rectum. He nearly died in late 2008 from just wasting away. He went from 170 pounds to 110 pounds and just couldn't eat. He's up to 150 pounds now and holding. He is on Imuran and Remicade treatments, but they don't seem to be working too well anymore.

Does anyone know anything about Naltrexone as a treatment for Crohn's? I'm trying to find a doctor who will prescribe it for him. It is in phase II testing at Penn State, but it is not approved yet and probably won't be for another 10 years. It's often called lose-dose naltrexone (LDN). We live near Detroit.

Mark has a long life ahead of him. I just know that he could do something with it if he felt well once in a while. My heart goes out to all the people on this forum who suffer from this horrible disease and to all the caregivers like me who have to watch them hurt. Help is on the way in the future. We need to hold onto that hope.

 

[susanfrances]

:welcome:Welcome! I'm happy you found this forum to share your experiences, questions, and frustrations. I don't know about the Naltrexone, I haven't tried it, but I'm sure there are many knowledgeable folks around here who have.... check the treatments forum also.

I was 34 when I was diagnosed and my daughter was 9 when she was diagnosed. I'm not sure there is a good age- but it looks like you have the supportive and knowledgeable parent part covered... and that is so important.
Hang in there and keep us posted!:hang:

 

[Dexky]

Welcome Litebody!! You can search LDN at the top of the page. You'll find many results on here for it. There is a user, Kev, for whom it has worked wonders!! Good luck!!

 

[jboi85]

Hi Litebody, sorry to hear Mark's not doing to well at the moment, but you sound very concerned, and more to the point, supportive, which is what he needs to feel better. I'm sure he will find some relief soon, and be able to achieve that which he is capable of. There are many very knowledgeable people here that will be able to answer any questions and help quash any worries you have about medications or the disease itself, and I at least feel that we are far more 'in the know' than many/most doctors and professionals, because while we may not have any degrees or qualifications etc we do have first hand experience of the disease and meds, plus all the knowledge imparted on us by our doctors. Has Mark got his own profile on here? Maybe it could help him to talk to other people about his condition? I know it helped me no end, just knowing that I have others who understand to moan at! Also these horrible afflictions can make you feel very isolated, and alone, and it's a fantastic help to learn that you are not alone with this. Hope he feels better soon, for his sake, and yours, so you can stop worrying about him. Speak soon