College-aged kids and how to balance independence

Crohn's Disease Forum

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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
 
This age can be so hard. My non IBD kid is twenty-one and getting her to follow up on health care is about as fun as wrestling with rabid tigers.

My IBD kid is 18 and starting humira tomorrow. He had been on remicade but built up antibodies so we are making the switch.

The ease of remicade/blood work every 8 weeks was great because I knew he was getting his med and every two visits an IBD nutritionist would meet with him which always improved his eating habits(though weight gain was still hard) and having a professional back up the importance of taking in enough nutrients daily really helped rather than Mom nagging him.

Humira is a shot and I have worried that he will be less compliant although he does give himself a weekly methotrexate injection already.

Thing is, he's 18 and most often feels invincible. Anything I say is nagging and he doesn't want to hear it. If it is something I really want to get across to him I mention it to his GI nurse and the GI will usually emphasize it at his appt.

But, sometimes, the truth is they just have to find their own way and they may have to deal with the consequences of their actions at some point. My bigger worry, at times, is that my son won't associate those consequences with his actions and so the cycle will continue. But, all I can do is give him the info I have and let him decide what to do with it.

Hugs! I think I've said numerous times teenagers are hard. Hopefully it gets easier.
 
Thanks Clash for the advice and support. The idea of using the GI or nurse to reinforce the important stuff is a very good one. For a kid (at least mine) hearing it from anyone other than mom seems to make it more legit :) I will try that.

Good luck with your son + his new treatment w/ Humira. A lady I work with just started it and she says it's "a breeze" - hopefully you find it to be the same.

I agree that all the actions have consequences, especially neglecting the basics of good health. But that's all part of growing up as you say, and it's funny how we really have no choice - it's their choice. It's just hard (and scary) to be a bystander in the process. It is so dang hard for them too - it's just such a crazy disease that is so unpredictable and very overwhelming.

Thanks again for your reply. I really appreciate it so much and somehow it helps to know you're not alone, if nothing else.
 
Hi theresad!

I saw the title of your post and had to read. I am 27 years old and was diagnosed with Crohns when I was 20 and in a 4 year college away from home. I ended up having to have surgery in my Sophomore year and took a quarter off.

Before my surgery I was extremely sick going to the doctor all the time and on steroids as well. Trying to deal with my Crohns and school was so hard because missing lectures made it impossible to really excel in my classes.

I ended up finding that explaining to my teachers that I have Crohns and what I go through was extremely helpful. Most of them did not know what the disease was and they were much more sympathetic to my needs and to take days off if I needed it. Also, you should have your son check out the disabilities center at his college. It is not just for students that have learning disabilities but for students that have chronic diseases that interfere with classwork. They allowed me to have first pick of my classes each quarter so I could plan out my schedule. They let me take my tests in their center so I could have as much time as I wanted to take them and have great bathroom access if needed as well. I found this SO helpful and maybe your son would too. They just needed a note from my doctor confirming my diagnosis.

With regards to him taking his disease seriously........I was there too with my disease. In the beginning my parents took my disease much more seriously than I did. I think I was in denial that I was sick to a certain extent. It was frustrating knowing I couldn't eat the things I wanted and had to be restricted (also I was so tired all the time it was hard to get motivated to go do things). There were times I didn't take my meds or eat what I was suppose to and what not. It is still hard for me at 27. I think being young we think we can bounce back from anything and we think we shouldn't be restricted.

I think what helped me take my disease more seriously was being more involved in researching my disease. My parents took the lead in the beginning by finding me the best doctor and researching so much about what I had. I love them for that but I think it made me lazy about knowing more about what I have and what could happen if I didnt take care of myself. Now, I try to find things out for myself and it helps to talk to people I can relate to like on this site or going to support groups.

I hope this helps you and feel free to PM me if you have any other questions. Also, Ensure helped me for when I needed nutrition because I thought it tasted pretty good. Good luck with everything!

Jenn
 
Houckj - I'm going to copy some of your advice and send it to my son! On campus support is a great idea - if he could get some extra help, it would probably make a huge difference on bad days. The stress from college can be so much to begin with, I don't know how you guys do it dealing with all you need to manage. I really respect your strength.

And thank you so much for your perspective on parents :). I think you're totally right - I think as parents, we want to help you so much that we just start doing everything for you. We think we're helping - it's just an instinct to take over I guess, but if we step back, it gives you the opportunity to take the reins and then just ask for help when you need it. As you said, when you're personally involved/invested and have more control, it leads you take more ownership - that is how it is with so many things I guess. Being a parent is hard, and we make alot of mistakes :) It's hard to remember that when your kids are older, you need to become the passenger and not the driver - even on things extreme as this. Thanks for reminding me!

It is so helpful to hear from you because I know I don't think about things the same way. I love your feedback. Thank you so much for your insight.

Are there forums you visit, or groups you're part of with people your age that have helped you?

Thanks again!
 
There is a teen young adult forum on here that he may want to join, theresad.

And yep, C starts college this fall and I have already spoken to the office of disability. C has met with them as well and turned in a letter from his GI and his 504 allowances as recommendations for things that will help him while attending, great advice!
 
I agree with Clash. My son is 20 and off at university. All I can do is repeat, repeat and repeat - but, within reason, or they just block you out completely. :( However, I have stressed to him that when he suffers, I will suffer along with him and it will break my heart, however, at the end of the day, it will be him who will have to live with the consequences.

My son is on remicade so compliance is fairly simple. He does take a couple of supplements - krill oil and vitamin D which I believe he does take fairly consistently. However, I am quite confident that he does drink one to two Boost shakes every day and this alleviates some of my concerns re his nutrition. If he chooses to skip a meal or have an unhealthy one, I know that he has, at least, gained the nutrition from the shakes.

If you can convince him of the shakes, it may help with his weight, nutritional status and just as a supplement when his appetite is low. It really has become so much a habit for my son, that it has become a 'convenience' - even his roommates have asked him for the odd shake when they are late for class! Not suggesting the shakes should replace the majority of his meals but... they are a decent back-up.

Do you go to your son's GI apptmts? I still go with my son and before the apptmt tell him what questions I'm going to ask, my reasons for asking and ask if he'd like to add anything... Although I get little feedback other than 'don't take too long mom' :), I do think it's an opportunity for him to add something or consider why these 'things' are important.

And, I've found (and I think Clash has mentioned this before as well), that they actually do hear more than they let on... ;) Once in a while, my son has asked questions and his terminology and context of the question show that he has listened in the past. :)

Long ago, I also made a deal with my son - that I would stop constantly asking how he was if he promised to let me know if there was an issue that I should be aware of. It's worked decently well - sometimes I think he waits a bit too long to tell me about something but, he doesn't ignore it and does let me know when it doesn't go away. :)

Its so hard to watch when you are afraid they are making a mistake. :hug: It's definitely a transition moving from teen to young adult but, it's also a big transition for us parents, letting them go a bit further once again... :ghug: It really does sound like you're doing a great job!!!
 
theresad
I get where you're coming from. I have a 21 year old who is a junior in college. Before he started Remicade, his weight was quite low and he was not drinking the nutrition supplements (bec. he "forgot".) He is 2 hours away so I can see him every 2-4 weeks at least to eyeball him. He is on a meal plan so that helps. Does your son have the option of a meal plan?

Weight gives you some indication of how he is doing. If you trust him to weigh himself twice a week and let you know the results, that might give you some indication of how he's doing. In addition, colleges usually have health services that could see him in their office if his GI doctor wants certain things to be monitored; some have nutritionists and most have counseling centers. It's difficult to know how involved a parent should be at this age. I think it varies greatly. Some 21 year olds are very responsible and really adults, and others are not. Some want parental involvement and others fight it. You know your guy. It definitely isn't easy being a parent!

My son really wasn't doing much before the Remicade and I think it was that he had no energy from the Crohn's. He still tires out but he is much busier
these days.

Wishing you and him the best!
 
My son really wasn't doing much before the Remicade and I think it was that he had no energy from the Crohn's. He still tires out but he is much busier these days.!

Good point! When S was not feeling well/fatigued, it certainly affected his activity level and it did affect him emotionally as it frustrated and angered him that he couldn't physically do what he wanted.
 
I don't have advice but wanted to let you know that my daughter will be leaving home in the fall for college. I've spent a lot of time already wondering what it will be like for her. Wondering if she'll follow the same routines on her own. It's hard enough to have your kid leave home let alone leave home and have the extra that our kids have.

Somehow - i gotta believe - all of our kids are going to figure this out. They might not get there the same way we would get them there, but I gotta believe they will get there.

(((hugs)))
 
We were just discussing this today. College is still a year away for us but I a, so nervous about my daughter being able to go away and manage on her own. I guess all of us parents worry about them growing up and becoming independent.
One thing I would tell you is that if you think the imuran isn't working I know you said they upped the does and obviously you need to give it some time but if it doesn't start working then ask the doctor about moving on to something else like remicade.
It seems a lot of kids here have had iMuran or 6mp stop working after a while and had to change to something else so just something to consider/watch out for.
 
Hi theresad and welcome to the forum. :ghug:

Both of my children have children and attend university. My son was diagnosed at 17 and is now 21.

Both of my kids are at home at present but my daughter, now 23, did live 600kms away for 4 years whilst completing her Bachelors.

You have already been given wonderful advice so I will just add a few thoughts:

Registering with the Disability Office: In my daughter’s case this was automatically done due to an application that was made in high school but nonetheless she was loathe to touch base with them when she began uni. She had a difficult last year of school and I think it boiled down to her Crohn’s and the normality it took away from her, she required a resection and that has left her with some lasting legacies. At that point in her life she just wanted to be herself with no labels attached. I personally believe that the assistance they are able to provide to students is invaluable. After a few months she did go and see them about some medical assistance but as it was she never needed them for the academic side of things. I always said to her disability assistance isn’t about you having some sort of advantage over others or being different but rather it is about equity as you face hurdles in everyday life that others never have to give a second thought to. She was open to academic staff about her Crohn’s and they were always nothing but supportive and accommodating. I will add here that given the 12 months prior to leaving home were rocky to say the least I was petrified of her moving so far away. As it was she found her feet and flourished.
My son attends the local university and when he first became ill he was already at university. As a result his lecturers knew what the issue was and the school in which he is studying have remained fully supportive of his needs. I can’t fault them.

Nutrition: Many people with Crohn’s have a fractious relationship with food, my two included, and it is understandable that they do given that eating often brings unwelcome side effects. I also felt with my daughter that food became about control. By that I mean, when so many aspects of her life were controlled by her disease, or the legacy of it, food was one area where she could gain some control back. In the end though they know their body better than anyone and I have had to step back and follow their lead when it comes to diet and their food choices, including how much they eat. In your son’s case you may also be looking at the fact that his flare is still playing a part in his eating patterns at present.

Fatigue: Where is your son’s Crohn’s located?
Flaring will cause fatigue and this may take some time to overcome.
Do you know what his latest Iron levels are? Has he recently had Iron Stores done and if he has Ileal Crohn’s have B12 levels been checked?
How much Vit D does he take and what are his levels?
Has he had Magnesium and Zinc levels done?
I hear and understand your fears about meds but your boy really needs to find a deep and stable remission and you may have to consider that Imuran won’t provide that. :(

Communication: I have found with my two that it is imperative to keep the lines of communication and to do so it more often than not means pulling back when it comes to talking about Crohn’s. They are adults and questioning often comes across as nagging. I provide them with information much as the same way you would a friend. I will send a an email with a link and say…I thought you might be interested in this. What they do with that information is up to them, I can’t make them do what I would like them to. I have said to both of them that they can come to me about anything and I will help them. They will both come to me about their health concerns and they still ask me to make their doctors appointments. :lol:

I know how hard this is for you hun. :ghug: As much as I hate it I have to give them space to make their own choices, to go out and live their lives, to forge the way ahead and make fabulous choices and bad ones too. The main thing is I will always be supportive and here to pick up the pieces if need be and there won’t be any...I told you so. No doubt you will too. :)

And lastly…a 17 or 21 year old with Crohn’s is just the same as a 17 or 21 year old without Crohn’s, they are invincible…unfortunately! :biggrin:

:hang:

Dusty. xxx
 
Thank you all so much for your responses and support. I'm so thankful for you guys taking the time to give me advice.

I sent an email to my son about the disabilities office, and some of the benefits that he might want to check into. (I made sure his college has one, and it does)

@DustyKat, a little like yours, he is not crazy about acknowledging Crohn's as a disability - he doesn't really share it w/ people and sometimes not even his teachers, but I just pointed to some of the benefits that may help him, and will leave it to him to explore. Maybe he'll keep it in the back of his mind and look into it when he's ready, or when he is really needing it.

In terms of his treatment plan, like alot of you have mentioned, this is obviously on my mind.... I know that the GI is giving it his shot at staying w/ Imuran, but his therapeutic levels are low, and there's the thought of the next step we may have to take that is the elephant in the room.... He will go for another blood test in 2 months to see if the higher dose is helping, and if it's not, we will need to make a decision.

@DustyKat again, to answer your questions:

Where is your son’s Crohn’s located? Terminal Ileum, no colon involvement except for a few lesions at first dx, since resolved on follow up colonoscopies and MRI

Do you know what his latest Iron levels are?
Has he recently had Iron Stores done and if he has Ileal Crohn’s have B12 levels been checked? His most recent labs show HgB and HcT are marginally low, Total Iron and Iron Sat quite low, Ferritin is OK. I asked about getting another Iron study which the GI ordered, and we're waiting for results. His b12 is solidly in range, and he has been getting injections and taking oral B12.

I know that his Iron is an issue with fatigue - it was my top concern at our last visit. I know that it can wreak havoc and anyone with low Iron and HgB knows how chronic fatigue feels. The GI's opinion is that active disease/flare is the culprit and that once this is under control, it will resolve. It's clear that oral iron supplements are not absorbing, and he thinks an iron infusion will not help if the disease is not under control. His message - get the disease under control, and the Iron will get under control. I thought that sounded lucid?

How much Vit D does he take and what are his levels? He takes 5000mg Vit D/day and his levels were historically low but now are solidly normal

Has he had Magnesium and Zinc levels done? I don't see we've ever had mineral studies, I will ask about that.

I hear and understand your fears about meds but your boy really needs to find a deep and stable remission and you may have to consider that Imuran won’t provide that.

I know... You're right. We have been trying to manage with the Imuran but it seems that it just isn't doing its' job entirely. I know that there's a decision that is on the horizon that we're going to have to make. I just really didn't want to make it. How's that for rational :)

I felt that if he could do more from his end (diet, lifestyle, etc.) that Imuran would be enough. We added LDN two years ago (I know, a long shot), to see if that could help anything. I'm not sure if it did anything or not. We have no idea. With the Entocort added now and the Imuran up to 150, he is reporting feeling better, no D, 1-2 solid BMs/day, and a better appetite. But once the Entocort goes away, he may go right back to where he started.

I'm basically terrified of biologics because of the side effects for his cohort group, and hate the thought of introducing them, but on this last flare, I did have the sinking feeling that we just may have no choice. I go back and forth on this in my mind a million times a day. The guaranteed effects of an uncontrolled disease vs. the potential dangers of the treatment itself.

What I have decided that if his next Imuran test comes back the same way, I am going to let my son and his GI make the decision together on what's next. He's not 17 anymore, and it is now unfair of me to push my opinion on this while my kid has to suffer the consequences. It has to be his decision. He is a smart kid, and a logical kid, and he is the one who knows best how he feels and how to weigh benefits and risks in the full context. We have talked about the treatment options in the past, so he's aware of what they are, and the risk/benefit of all of them.

I do feel thankful that we were able to keep things relatively contained through his teens, though now I think we're entering another chapter on all fronts. I guess that all these things go hand in hand, and now it's time to pass the baton to him - maybe the universe is giving me a message... :)
 
theresad,
I just wanted to add quickly that some people can be suffering greatly with malnourishment when blood levels are not too bad. That happened to me.

I suspect that some of the motivation/school issues your son is experiencing may be related to malnourishment. I found it very hard to do thinking activities when I was ill and, because this went on for so long for me, it just became my new normal without me realizing how poorly I was functioning.

Because your son does have some abnormal blood levels I would use that as a starting place to continue the discussion about him finding some way to get better nourishment while he waits for medication issues to be decided.
If he won't drink supplements, perhaps he would consider using an NG tube temporarily to consume them overnight? Tesscorm could give you info about this as her son did it for awhile. Good luck.
 
Theresad
Sorry to hear he is having a rough time
Making peace with biologics is hard
But 6-mp and Imuran have a higher rate of lymphoma than biologics alone .
That said the risk of dying is much higher for everyday life for a late teen/early twenty than anything in the biologic plus Imuran combo

I only know numbers for less than 14
Risk of death
By car 1 in 250
By drowning 1 in 1000

T cel lymphoma without Ibd or drugs average person on the street 2 in 10000

When you add biologics plus Imuran use at any time 6 in 10000

Everyday life risk goes through the roof for teenagers

Hope he heals up soon

Second the use of supplemental formula to help with nutrition
 
it is now unfair of me to push my opinion on this while my kid has to suffer the consequences. It has to be his decision

This is exactly how I felt moving on to remicade. :( When my son moved from his ped to adult GI, the new GI was adamant that remicade was needed. He'd been on only supplemental EN as a maintenance treatment for almost two years... had no symptoms, looked and felt good, etc. but MRE's showed continued inflammation. GI felt that the chronic inflammation would eventually cause permanent damage (ie scarring, etc.)

I wanted to try LDN but GI didn't feel it would be enough. While I didn't agree that we didn't have time to give LDN a shot, my son did not want to risk the consequences of undertreated crohns. I gave my son all the info I could and the risks of any decision but, in the end, let him make the decision. He was more comfortable taking on the slight risks of remicade over the more likely risks of undertreated crohns. He has been on remicade now for two years and is doing well.

There is no right or wrong answer... we each, including our sons, must make decisions based on the information we have on hand. No question, it is sooooo very tough to make these decisions but, at least we do have these treatment options.

And, as MLP mentioned, there are risks every day in life... I remind myself that I'm not reading the stats each time he gets in a car driven by a friend, nor each time he plays contact hockey, nor sunny days at the beach resulting in a sunburn, etc.... We all willingly accept those risks because they improve our quality of life... but if I'd had to actually read and sign off on those risks before he left the house?!?!?... :ack: :yfaint:

Be reassured that you and your son have looked into all the options and are making informed choices. :ghug:
 

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