- Joined
- Nov 17, 2012
- Messages
- 70
I've read this forum with great interest over the years but never posted. This is an amazing resource for info and support and I just love all the posters and the kindness and compassion shown on these boards.... It is really incredible.
I feel compelled to post now because I just don't know what to do...
My son was dx'd with Crohn's @ age 17. He is now 21. He had a rough end to high school mentally and physically - lots of struggles with grades and motivation, trying to get meds right, a lovely fistula a month before graduation... all the usual joys of this disease that are excruciating for both patient and parent. I cannot count the # of times I wished that I could take this disease on for him so he could have a normal life.
On the upside, he has been relatively controlled with Imuran (and Entocort when needed) over the years. Not without the usual challenges/occasional flares, but I couldn't bring myself to go with a biologic due to the alarm I had about issues w/ these in my son's cohort group, so our GI went with our wishes and we stuck w/ Imuran. He also takes LDN, EPA/DHA, AKBA, pre-probiotics, Iron, vitamin D.
He did a couple years of community college - same problems with grades and motivation. Now he is away a 4-yr. school working on a bachelor's degree. His grades were OK, not great, but he held his own first semester.
Then of course, he came home for holiday break in a flare, significant weight loss, and his labs looked like crap - GI ordered an MRI that showed improved but still active inflammation, and Imuran theraputic levels came back showing good tolerance but low effectiveness. GI upped his Imuran and added a course of Entocort hoping this would help. I also started giving him Nutren as a supplement over break, sometimes up to 4x/day to improve his calories because his appetite sucks. (I would prefer a supplement without carrageenan but this is the only supplement he can tolerate)
Now he's been back at school for second semester. He says he feels better with the med re-balancing and even has an appetite. But I know he's not eating. He lives in an apt-style dorm w/ no cafeteria and the groceries I sent 6 weeks ago have to be gone by now. He's not ordered more groceries (we know what he buys because we get his cc bills), only gets the occasional take out, he's not drinking the Nutren I sent with him (he says he doesn't need more), and I know that if he doesn't take care of himself, the meds can only do so much. When he's not @ class, he doesn't do alot and is not super-social (but I guess most guys that age like videogames more than people, so what can you do). I know he wishes he could have more friends/do more things, but he just isn't motivated, and is probably a little depressed. He went to a counselor a few times, but has not been back.
Anyway, I don't know how to get him to take this seriously, and I know I don't have the power to "make" him do anything. I'm confused as to why he refuses to take care of himself, but then again, he's 21, and I know at that age, I probably would have done the same. I'm just worried sick about him...
I'm confident he at least takes his meds. But I feel so helpless and scared about what could happen. I don't want to hover. But then I want to go move into his dorm and shop/cook for him Everything I do, and don't do, feels like a mistake.
Anyway I guess this was just a long vent about the perils of being a mom.... If anyone with teens/college kids has any advice for me on this, or even can commiserate, I would so much appreciate it!
And if you ARE a young adult with Crohn's, I would just absolutely love your perspective....
Thanks for reading.
Theresa
I feel compelled to post now because I just don't know what to do...
My son was dx'd with Crohn's @ age 17. He is now 21. He had a rough end to high school mentally and physically - lots of struggles with grades and motivation, trying to get meds right, a lovely fistula a month before graduation... all the usual joys of this disease that are excruciating for both patient and parent. I cannot count the # of times I wished that I could take this disease on for him so he could have a normal life.
On the upside, he has been relatively controlled with Imuran (and Entocort when needed) over the years. Not without the usual challenges/occasional flares, but I couldn't bring myself to go with a biologic due to the alarm I had about issues w/ these in my son's cohort group, so our GI went with our wishes and we stuck w/ Imuran. He also takes LDN, EPA/DHA, AKBA, pre-probiotics, Iron, vitamin D.
He did a couple years of community college - same problems with grades and motivation. Now he is away a 4-yr. school working on a bachelor's degree. His grades were OK, not great, but he held his own first semester.
Then of course, he came home for holiday break in a flare, significant weight loss, and his labs looked like crap - GI ordered an MRI that showed improved but still active inflammation, and Imuran theraputic levels came back showing good tolerance but low effectiveness. GI upped his Imuran and added a course of Entocort hoping this would help. I also started giving him Nutren as a supplement over break, sometimes up to 4x/day to improve his calories because his appetite sucks. (I would prefer a supplement without carrageenan but this is the only supplement he can tolerate)
Now he's been back at school for second semester. He says he feels better with the med re-balancing and even has an appetite. But I know he's not eating. He lives in an apt-style dorm w/ no cafeteria and the groceries I sent 6 weeks ago have to be gone by now. He's not ordered more groceries (we know what he buys because we get his cc bills), only gets the occasional take out, he's not drinking the Nutren I sent with him (he says he doesn't need more), and I know that if he doesn't take care of himself, the meds can only do so much. When he's not @ class, he doesn't do alot and is not super-social (but I guess most guys that age like videogames more than people, so what can you do). I know he wishes he could have more friends/do more things, but he just isn't motivated, and is probably a little depressed. He went to a counselor a few times, but has not been back.
Anyway, I don't know how to get him to take this seriously, and I know I don't have the power to "make" him do anything. I'm confused as to why he refuses to take care of himself, but then again, he's 21, and I know at that age, I probably would have done the same. I'm just worried sick about him...
I'm confident he at least takes his meds. But I feel so helpless and scared about what could happen. I don't want to hover. But then I want to go move into his dorm and shop/cook for him Everything I do, and don't do, feels like a mistake.
Anyway I guess this was just a long vent about the perils of being a mom.... If anyone with teens/college kids has any advice for me on this, or even can commiserate, I would so much appreciate it!
And if you ARE a young adult with Crohn's, I would just absolutely love your perspective....
Thanks for reading.
Theresa