I NEED to help.

[lovehimtodeath]

So i'm a sophomore almost junior in high school, my boyfriend is a junior almost senior. he was diagnosed with crohns disease about a year and a half ago. he's been on various medications for it and currently is on remicade. we've been best friends for a year but only recently started dating. he gave me the strength to get out of an emotionally abusive relationship. i know its only been a few months but i honest to god love him and would be honored to be his wife someday. he gets very overwhelmed especially lately because his crohns is getting worse. i really want to help him. its emotionally exhausting to me because he misses a lot of school and im faced with everyone questioning where he is and saying he always ditches school (no one really knows about his crohns). i want to be there for him so badly its just hard for me. i don't know how to find the strength but i know i need to for him. our relationship is very intense as far as how close we've grown so quickly, i really do feel like we could be together for a long time but i want to know how to be moral support and help him through this horrible disease. i love him so much that i honestly wish there was a way tht he could live without the disease and i could have it instead. all i want is for him to be happy and healthy and not in so much pain all of the time.

 

[Gunny]

I am 43 and not sure what kind of age related advice I can give you. I was diagnosed at age 30.
I think I was compelled to write to you because I can see you really want to be there for him and try and help. Everyone here has a different story about their Crohn's and it varies so widely with their physical symptoms and the emotional symptoms that each person has. Obviously, being a younger teenager is going to be emotionally more draining on him than it will be for those of us who are older. Each of us tries to deal with it in our own ways, sometimes reaching out to others for help or advice, or keeping to ourselves and not discussing a potentially embarrasing disease with others. Obviously, he has chosen the later. I am not sure if there is anything you can say or do for him except to support him in the way you already are. You might want to suggest he join the Crohn's and Collitis Foundation of America and join this site as well. The CCFA has camps in the summer time for people of all ages to include teenagers. I guess mostly what I am trying to say is if he is not ready to address it with others, don't force him. Do as you are doing now and just support him the best you can. Be the buffer for him at school when others think he is just skipping school. Tell him that this is happening and ask him how he would like you to deal with it. Hopefully the remicade will make a big difference for him. I just started it myself and have my second infusion this Thursday and already I have notice improvement.
I hope this helps a little bit, and I hope he takes a look at this sight. It has really helped me a lot.

 

[Dogluv]

Your story is so sweet! Your boyfriend is lucky to have someone like you to be there for him in tough times! I'm a teen also, so I know how hard it is finding good, trustworthy friends. Ask your boyfriend how much information he is ok with you Giving to people who question you about where he is, etc. Remember you may not feel the same pain he feels, but you share a strong emotional bond. You will always feel sad and scared about what he's going through and that's how you know you love him!

 

[25times]

Although I wasn't diagnosed until I was 20, I have dealt with this disease since I was 6. It got very bad at the end of highschool, and as a result, I missed many, many weeks. I was dating and living with a really sweet guy at the time, and he was as supportive as he could be. Since I wasn't diagnosed he could have easily thought I was faking it or whatever, but he didn't. He came to all my drs appointments, all my colonoscopies and specialist appointments, drove me to the hospital multiple times, and handled the rumours at school for me. That helped me more than anything the drs did. If you can do that for your boyfriend, I know he'll appreciate it more than you could know. This disease is so difficult, and dealing with it through highschool doesn't make it any easier. I have since broken up with that guy, but were still really good friends. When I told him I had finally been diagnosed, he called me, crying. I'm now with another great guy (almost 2 years strong!) and he's even more supportive. He gives me massages when my joints are on fire. He brings me toilet paper after a particularly horrid bowel movement. He cleans the house, does my laundry and goes to the store for me all the time. He comes to my drs appointments when he can, stays with me at the hospital as long as possible, and let's me vent to him when I'm super frustrated. I don't think I could handle this if it wasn't for him. If you do any of these things for your boyfriend, you'll help him an incredible amount. Also, I find it so sweet when my boyfriend researches new treatments and diets for crohn's. Even though I don't think they will help, it means alot to me.

 

[crazycanuck]

Hey there. Well I guess I can somewhat relate here but instead in reverse roles. I was diagnosed in grade 10 (which to my understanding is a sophomore) and now approaching 4 years later I am still with my girlfriend I was with before diagnoses.

My girlfriend was faced with many of the same problems your having right now with constant questions and misunderstandings about what exactly was going on. My girlfriend and I have been going to school since age 5 so maybe that's where this may differ but before we started dating she was already the girl I told everything to and she knew everything. I also made a point of telling everybody at school who I was close with. Eventually everybody had a general understanding and people started to get used to it, from then on it was just normal that I left for half a class at a time or days here and there and nobody really asked.

I can't thank my girlfriend enough and I have to say the only reason I'm half the person I am now is because she did understand what was going on and completely accepted it. What your doing is great and will definately help. Just be sure not to push things too fast, when he wants to tell you everything he will but for some people its so personal that even those in their own family don't know half of what goes on. My aunt is a perfect example and the only reason I know is because she thinks I'm the only one in the family who understands Crohn's because I have it.

Have a talk with your boyfriend and just be sure of what is okay to tell everybody at school and what he'd rather keep private. In the end everybody in high school is nosier than your old next door neighbour and chances are they don't need to know everything anyway.

Best of luck.

 

[Jennifer]

I was diagnosed when I was 9 so I went through High School with Crohn's and had my ups and downs. I did miss a lot of school especially since I had my surgery when I was a senior. I told my teachers about the disease and they all understood. I went from a failing grade in Chemistry to passing with a C just by telling my teacher what was going on (his mother had Crohn's so he understood very well). When I was in high school all I wanted was for someone to be there for me all the time and even if I pushed them away because I was simply irritated with the world I didn't really want them to leave. That's one thing you have to learn when you're on the outside. When to stay close and when to actually give some space. Sometimes we don't even know what we really want when depression sets in. So basically all you need to do is keep doing what you're doing. We can't ask for much more than that. Acceptance and being there.

 

[ameslouise]

Hi there and welcome!

You are sweet for being so concerned about your BF and already understand the "in sickness and in health" part!

The best you can do is be there for him and let him understand that you love him no matter what. This disease can be emotionally draining and psychologically damaging on a patient -there are embarrassing issues and body image issues, etc. Don't be offended if at times he just wants to be alone or not talk about it. Also understand that for some patients, Crohn;s can literally take over every waking moment. We try not to become our disease, but sometimes it feels like our entire identity.

I guess my biggest piece of advice is this - while you obviously love him deeply and care about his health - this is his disease and he needs to deal with it in his own way. You cannot cure him. You can care for him and about him, but you cannot own his disease. You can be there for him, but smothering him is not going to take his disease away. Let him take the lead.

Good luck - I hope he starts to feel some relief soon.

- Amy

 

[susie]

Hi, I just wanted to say that I feel for your boyfriend but also for you: it is heartbreaking to feel useless on the face of pain that doesn´t go away and can´t be transferred to a different person at least for a bit
And you guys are so young! Crohn's on top of all the stuff going on already!
Anyway, you have my deep sympathy.
A very dear friend of mine has IBD, this is a thread with advice that people gave me about what kinds of things are supportive when you are sick with this thing, maybe you find it useful.
Take care,
susie