16, And How Crohn's has affected me.

[Jewlz]

I really don't know where to start. Theres so much, but I'll do my best to form my thought in a well organized piece.

As a young kid in elementary school, I seemed to get an unusual amount of stomach aches. These weren't serious, and my parents believed it was just gas pains.

Years later, I had been having persistent stomach aches for about a month, I also had to be weighed in, for football. This is when we realized something was wrong with me. I had lost weight from the year before, yet gained height.

We consulted with a doctor, and at age 13, I was diagnosed with crohns. I first treated this with pentasa (melamaze; awful spelling) the pentasa was not effective. I started humira, and after about 6 months, I had complete remission and I actually stopped taking the injections, and was in remission healthy for 2 years after, without any medicine.

One day, I go to the doctors for a routine physical, and I'm given the option to take many vaccanations (HPV, flu shot, meningitis) I tried to call my mom, and ask her if it was a good idea, because I was skeptical, but she was in a meeting, so we went ahead and i had the vaccinations. A week later, my crohns had become worse than ever before. Now, I'm not saying these vaccinations are what flared up my crohns, but I think it's very possible.




With that background information out of the way, let me start at present day.

Today- I'm 16. weeks away from being 16.5. Yet my quality of life has drastically fallen. Unfortunately, I missed around 50 days of school, and I was not going to be able to pass 10th grade, so i disenrolled. Crohn's has managed to extremely compromise my formal education; I have now only completed 9th grade. Not only has my education been compromised, but my quality of life has aswell.


Crohn's disease has made me enter a very unwanted state of depression. Every day, just like many other patients with a sever case of crohns, i experience excruciating pain and nauseau. To cope with such discomfort, I now smoke about 3.5 grams of marijuana every day. The pot temporarily makes me not so depressed, and temporarily gives me an appetite, and temporarily makes me feel good in the stomach, but its not enough.

I can't live this way, so in the next couple weeks, I am most likely going to be put onto humira again. This relieves me, yet makes me just as hopeless as before. (worried about side effects, hate having to get injections)

Crohn's so far, has ruined my life, and has made me contemplate whether or not to live it out and fight, every day I think about it. Is it really worth dealing with this pain, to experience more pain later in my life? Is it really worth being disabled my whole life? How am I supposed to be happy without the college degree i was expected to get, how am I supposed to be happy, when 1 step forward is 2 steps back?

I have this everlasting anger I feel in my veins, my blood, and in my skin, every day. For the past 4-6 months I've spent %95 of my day on my laptop on my bed, in my room, smoking away the mental and physical pain. There's so much anger and resent I feel building up inside that I don't talk much more. I have many gamer friends online who I talk to, but not in real life. I live alone with my mother, who works every day from 7 am-7pm, makes me dinner at 7, then spends most of the night down the road at her boyfriends house. Me and my mom don't talk though. I respond with grunts, I don't know what to say to her. Nothing is the same as how it once was. Were not a family anymore, dads gone, Gavin's gone. How can we act like everything's fine and normal when its not? I can see in her eyes and facial expressions that she has lost hope for me aswell.

I just want my life back, I want my health back, I want my education back, I want my family back. Yet it all seems too late and hopeless. Yet no matter how many steroids I take and no matter how many hits from the bong I take, the underlying cause never goes away.

The last 6 months of my life have been equivalent to my own hell. And the worst part of it all is I'm only 16. Not because "oh awwh hes just a kid he shouldn't have to go through all that" But because I know that if I wanna actually live the rest of my life, its gonna be plagued with flare ups, and basically hell. It makes me so pessimistic for my future I don't want it to arrive. Yet at the same time the present makes the fire inside me hotter than 1,000 suns.

Im confused, I'm dillusional, Im sad, Im in pain, Im hopeless, Im useless.

 

[Clash]

You aren't useless, you are fighting a chronic illness and that can bring you to your knees at times. All the emotions you are dealing with are normal but if you feel it is getting too difficult to deal on your own then it is time to talk to someone who can help you to work out all of these emotions

Have you been on any other meds besides the ones you've mentioned? Sometimes it is hard to go back to a biologic you have previously used because your body can build antibodies. Youight want to have this discussion with your GI. There are other options, Remicade, Cimzia are other biologics then there is imuran, 6MP and methotrexate. The last three can take a little longer to get to therapeutic range.

As far as school were you on a 504 plan? You may want to check into this with a 504 the school will provide homebound teachers when you have to be out of school as well as other support. There is also virtual schools and flex schedules that can help you achieve your goals.

My son is 16, he was dx'ed last year he is on Remicade and methotrexate and missed a lot of his 10th grade year as well. We changed to a more flexible academic program and have his 504 in place as well. He wanted to go to college through ROTC and that is no longer an option since his dx so he has struggled a bit with what his future will hold as well. But he has time to figure it out and so do you. It doesn't have to be set in stone with only one route to get there.

This forum has a teen forum you are welcome to check out and the forum is full of caring, knowledgeable people that can offer great support.

Sending hugs your way and don't give up. It can and will get better.

 

[Amy2]

I'm very sorry that you aren't feeling well right now, but it will probably make you feel worse laying around in bed all day. I understand why you would be angry, but it's not good for you to feel angry, constantly. Would it be possible for you to speak to a therapist?

I wouldn't worry too much about school, short-term. My daughter who has Crohn's, got her GED, started college, became an RN and makes really good money now. I have a 16 year old son who also has Crohn's and he probably won't graduate high school, either, but I'm really not concerned. What does it matter if he finishes college at 22 or 25?

In fact, I told him that for now, I want him to focus on one thing: Gaining weight!

Hopefully, your drs will be able to help you get back into remission very soon!

 

[alex_chris]

I just want my life back, I want my health back, I want my education back, I want my family back. Yet it all seems too late and hopeless. Yet no matter how many steroids I take and no matter how many hits from the bong I take, the underlying cause never goes away.

Hi Jewlz,

I know that any advice you'll get will either sound like simple pep talk to you or might even seem like we don't quite understand what you are going through. But I will just say one thing at the beginning and then still make some suggestions,... You are only 16, there is nothing that has happened that precludes you from living a normal life and in a depressed state of mind this is hard to believe, but trust me it's true.

In any event here are some specific thoughts:

1. Health. If you got problems as you have now, things always seem at their darkest. That's why it is really important that you'll start Humira and get your Crohn's under control. As Humira has worked before, it is likely that will work again. Together with sport, a good diet and not staying in front of your computer every day, you can get your health under control again quickly, you'll see.

2. Your mother. I know it might be hard, but you have to tell her that you are feeling depressed and that you want out of that depression and want her help to get there, including. Which leads me to 3.

3. Education. I understand why you dropped out of school. You had problems with your health and probably caused by that life in general. But as you say, what you actually really want to is be like other people and e.g. Eventually get a college degree etc. this will probably be the hardest part, but my suggestion would be if at all possible to enroll again for 10th grade for fall. That would mean you'll have to get your health under control and also over the summer start a daily routine where you don't game all day or use our computer but also study to get back into "school" mode. Interesting enough, in my own experience a daily learning routine instead of lying around in front of the TV or computer also helps with your health.

Anyway, believe me at 16 nothing is too late. But to get what you want, will not be easy and taking the right steps now probably will be hard. You, however, seem to want to take these steps, which is definitely the prerequisite for any change. As said at the beginning, this post will read like cheap pep talk, but well that's really what we can do here. Just remember, at the end it's you yourself who can get to where you want to, but as JFK once said "we do these things, not because they are easy, but because they are hard."

 

[Jmrogers4]

Jewlz,
You have been given some great advice and rather then just repeat it. I'm just offering my support. Definitely talk to your mom, school counselor about 504 plan it is your right here in the US and will definitely help with the school there is no reason you can not get an education.
I hope the humira works as well as it did the first time and you can get back to remission

 

[Jennifer]

Hi Jewlz sorry you're not doing well right now. Dealing with a chronic illness is hard at any age and we're always going to have feelings of wishing that we were normal. I was diagnosed when I was 9 and had a really hard time in school (honestly I think they thought I was retarded or had some sort of learning disability), along with difficulty making friends and having family members who never really understood my condition (apparently they were all doctors and knew just how I could get better by eating salads and avoiding all that candy, because to them I was clearly fat yet they seemed to have forgotten that I was on Prednisone and didn't make the connection that only my face was puffed up, not the rest of me... random rant. ).

It is possible to get better and go into remission for a very long time (I'm now recently in a flare but was in remission for 14 years after my resection). As you said Humira worked well in the past and it may work well again. Its important that you talk to your GI about maintenance treatment after your flare gets under control. The goal is to stay in remission until there's a cure rather than treat flares as they come with steroids because chronic inflammation builds up over time causing more and more scar tissue which can lead to surgery after surgery. Your quality of life is very important along with the possible damage that can be done to your intestines without proper treatment. So while we all hate medication, not only can it save our lives but it can make the quality of our lives so much better.

As mentioned, don't worry about school. Even with a GED you can still go to college and get the degree you've always wanted (or change your mind like many people do once they're in college). I was able to graduate from HS but to save money I started at a community college then went onto get my BA somewhere else and then got my Masters in sculpture after that. I've always wanted to teach sculpture and decided to try and become a college professor once I was in college. So far the schooling part is out of the way, now I just need to find a teaching job but that will take time.

You don't have to be disabled your whole life. While this disease can be disabling at times and we can even receive SSI and/or SSDI from Social Security for being disabled from Crohn's disease that doesn't mean we have to be disabled. Once you're in remission you wont have any pain or any of the other symptoms you've had. You can go to school and work at the job of your dreams. It is possible to get the illness under control and continue to live a normal life. If it takes injections from Humira or help from a different medication down the road then its worth it.

You aren't useless or hopeless, the disease just sucks. I know how that train of thought works though. I hope you're able to get the disease under control soon so you can start feeling better both mentally and physically. As mentioned, if it'll help try to see a psychologist. I've seen many over the years since I was a kid and it was helpful. Keep your chin up and keep us posted on how you're doing.