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16 and terrified

Before I start I'll say sorry to the moderators if this is the wrong forum, move it wherever it should be if it is. New here.

Anyways, I am 16 years old, diagnosed about a year and a half ago in February 2012. Went on Prednisone for a few months and had terrible mental sides, took a while to get back to normal. Now I'm no longer on pred, I take Asacol and Nexium. My Crohn's seems to be under control to an extent but the worst thing I am experiencing now is just the mental side of it. I fluctuate between being very depressed and normal, and even when I'm normal I am literally always thinking of my Crohn's. If I'm awake for 16 hours in day, I probably have it on my mind for a total of fifteen hours. My doctor tells me for the most part to at least limit my time on forums such as this because while there are good support forums, there's going to be a higher percentage of people having trouble posting on forums than those who have their Crohn's completely under control and seeing only stories of people who are sick and no stories of those who have it under control is not a good thing.

I'm just lost. I don't know what to do. I'm constantly stressed over my stomach, which is a vicious circle because stress worsens stomach ailments. It controls me and I don't know how to stop it. If it's hot outside, I'll feel the need to run to the bathroom and check and make sure the moisture I feel is just "swamp ass" and not me having an accident. When I get to the bathroom I'll wipe and it's always clean... Except for today I went to the bathroom to check and there was a minute amount of stool on the TP. I don't know if that qualifies as "leakage" or if that's just normal for anybody including healthy people who's enough of a weirdo to constantly go wipe their ass to check, but the more I think about it the more scared I get. I almost feel like maybe it is normal as long as it's minute amounts because I saw something one time that said the average pair of underwear has a gram of fecal matter in it. But at the same time, it may not be and who the hell am I supposed to ask to check? I don't have a basis for comparison because I obviously wasn't constantly wiping my ass to check before my diagnosis and it's an awfully personal subject to ask anyone else about.

I'm scared because I don't want what I have to get worse. My IQ is tested at 142 and I was very personable before my diagnosis. I always felt like I was destined for big things. Now, whenever I think about my future, all I think of is how Crohn's patient's prognoses normally get worse and I need to temper what I expect to do. I feel like I'm looking down the barrel of a shotgun. I'm not suicidal, but at this point... My thought is say what I had earlier today was indeed "leakage..." I want to go to college and have a normal experience, not worry about my ass leaking. I want to get out of college and date and get a job and not worry, not have to wear incontinence stuff. I just can't help but thinking I really would not mind it if I just died. Just letting go and being done. I just want to be free from worrying about this and feeling different from everyone else. I was pretty religious but I'm not even sure about that anymore honestly. My friends are all super religious and won't really take kindly to hearing that so it's just another thing I feel like I have to swallow. I lift weights and make myself eat to build muscle and study philosophy and history on my own time and everyone views me as fit and extremely intelligent and thinks I really just want to improve myself but inside I know it's nothing but overcompensation because I hate my body.

I'm sick of being controlled by my disease but I don't know how to stop it. How can I date someone and hold down a good job and have healthy relationships with people when every little twinge I get anywhere along my GI tract just sends me up the wall thinking what's going on? I just need some support. Even at this early stage in my life, it has affected my relationships pretty badly, it stressed me out so much that I lash out at girls I date and family for very small reasons. One of my friends has a ton of money and we were having a serious conversation one time, she made the comparison of her being extremely anxious about her trip to Europe with no parents to my Crohn's. Ever since then I've been resentful of her; she was one of my best friends but it just made me realize how superficial and charmed she is and we're slowly drifting apart.. I quit the basketball team the year after I was diagnosed (diagnosed sophomore year and played through it, sat out junior year), not because I was too sick to play but because I had played basketball for a decade and was sick of it. Well, I twisted it around in my head before this summer, and now as a senior I rejoined the team because I had convinced myself I quit because of Crohn's and had something to prove. I wasted half a summer going to workouts because I had convinced myself I needed to prove I was just as capable as the other players and just as fit as I used to be. Last year, I got back in a terrible relationship with someone completely insane because we had broken up right before I was diagnosed and God forbid an ex-girlfriend sees me as a frail sickly kid. I knew it would end badly but I did it anyway because it's like a coping mechanism, if I think people don't see me as the same or better as I was before I got sick I immediately have to prove them wrong.

I can't help but feel like my life is already ruined. I'm 16 worrying about whether I have "anal leakage" and whether I'll be too sick to have a normal life fifteen years from now, what the hell is wrong with my life. I really just want it to end. I don't even know how to describe my state because I'm definitely not suicidal, just apathetic. My doctor said that the first 1-2 years will normally determine the course of the disease and so far it hasn't progressed all that much, if it has progressed at all... But I worry he was just giving platitudes to a scared, shell shocked newly diagnosed teenager. And even if he wasn't, say it gets a little tiny bit worse every couple years... Like what if what happened today was actually "anal leakage" and wasn't just normal... Well that progressive buildup still puts me as one sick dude 20 years down the road. I just don't know anymore... I don't have any support from my friends because they're all so religious all I get is "Trust God and pray, there's always a plan for everyone;" I truly appreciate their sentiments but them saying that doesn't make me feel better. I did that and got nothing. The mental ups and downs were still there, physical symptoms stayed the same. It doesn't mean much when people tell me everything works out for the good in the end and the biggest problem they've ever faced has been some distant relative dying or making a bad score an the SAT. Talking about it in real life doesn't help, the only person I feel comfortable with talking about it is my mom and she has no idea what it's like, she just gives good emotional support. The support group atmosphere doesn't help me, it makes me feel worse because I feel like I'm giving Crohn's more power over me and my Crohn's isn't that bad, it's the depression stemming from it. My best friend's little brother has Crohn's and we were hanging out when his bro started having really bad stomach pains, his mom texted and asked if I could come offer some support. I got the text too late, when I checked my phone he had already fallen asleep, but I know I couldn't do much even if I had gotten it. I really love to help people and would do anything to support the kid but... The kid's twelve with symptoms ten times worse than mine and copes better than I do. Please somebody just say something. Anything. I'm completely lost and putting on the front to everyone I know that I have everything under control. I've gone from someone who was so happy with who they were to someone who constantly overcompensates and is super self-conscious and puts on a fake smile to hide how I feel. I need help but I don't know what to do, I don't feel like I'll ever be normal. I feel like any sense of normalcy in my life was destroyed when I was diagnosed.
 
Things will get better bud, sounds like you need better meds, asacol and 5 Asa's only do so much as they are topical, have you asked your GI about stronger meds? Also if you're getting cramps and runnin to the loo you're probably suffering some active cd. Maybe have a cal protectin done to see if there's any inflamation in your intestines, and if so it's time to start trying whatever it takes to get you into remission so you're not thinking bout the cd all the time.
 
I agree with Joshuaaa about stronger meds, particularly if you are afraid of the future. Immunomodulators and anti-tnf are disease modifying, if you take them early it's your best bet to halt the progression.
 
Thanks y'all. But that's the thing, I'm not really having to go to the bathroom, I actually use the bathroom once or twice a day, and only twice on days when I eat tons of food. I only go to the bathroom most times because I'm paranoid I've gone to the bathroom on myself while passing gas or something. That's what really set me off tonight, I normally do go to the bathroom to check pretty frequently (which I know is strange) but the TP is always completely clean. When i checked earlier it wasn't and I went from my normal back of the mind stressing to full blown panic. Honestly, it was probably nothing because I had the exact same thing happen back in about January or February and never had it happen again until now. Lately I've had a bit of soft stools, not exactly D but not formed. I attribute it to stress from school starting back and modifying my diet lately. Possibly with the pseudo D I've had lately I just didn't "clean up" well enough when i went to the bathroom before the whole episode. But normally I don't have frequent BM's and cramping is pretty infrequent. Lately, I've even been upping my food intake to put on muscle and I'm adding weight just fine, I would think if I was flaring I would have inflammation that would be bad enough to keep me from gaining weight due to malabsorption. Even when I'm completely physically fine it bothers me, at this point I can honestly say the mental aspect is much, much worse than the physical for me. Being in remission hasn't helped with my mental state all that much at all. It's obviously better than it was on prednisone but I still stress out no matter how I feel. My mom has Sjogren's Disease, she said that it's hard but after a while you just naturally stop worrying so much and it just becomes part of you, even if some days are harder than others. I keep hoping that'll happen for me but it's been a year and a half and no dice.

@Joshuaa - thanks for mentioning the cal protectin, I had never heard of that before. I had a colonoscopy to diagnose my inflammation. Looked it up and might be something to consider. You say there might be some inflammation like in remission there shouldn't be any... I thought even in remission there would always be some low level inflammation in Crohn's patients?

@tired - but the thing about stronger meds is, I'm worried about bumping up the ladder because that gives me less room to bump up the meds next time I have a flare. I had a colonoscopy and the doc said I was mild to moderate and my symptoms really aren't that bad. I'd hate to bump straight up to heavy stuff and then when I have a real problem there's no stronger meds to put me on/room to bump up the dosages on my existing meds. So in a way I'd almost be more worried about the future. In what ways are they disease modifying?

Sorry if I seem contrarian, I don't know much about all this.
 
Hey no worries. I tend to over worry about things also, I find marijuana to help that, obviously you're a lot younger so I don't want to influence you to try anything, as for calprotein and remission and what not, ideally, in remission - ( a deep stable remission) there should be no inflamation, one should be histologically disease free (I don't think iv quite got there yet) I believe it takes the right meds at the right doses, and the avoidance of triggers, namely stress and bad diet, lifestyle. I hope you can stop worrying, maybe see a therapist? As for the calprotectin test, ask your GI for one next time you see him, if he doesn't know what the test is its time to get a new doc. This disease can be beaten but you gotta fight for it. Hope you feel better
 
Good morning Forumuser. My crohn's hit me when I was 17 and finishing my first year university, right about the time I was starting to feel like I was going to make my mark in the world. I know how you feel.

Crohn's really can do a number on you if you let it get into your head. It nearly killed my time in university, and I only really got through because I had good friends and family push me a little when I needed it. It kept me from dating throughout my late teens and all through my 20s. It kept me from starting a career early in my life. While I admit that the first 5 years of my disease were pretty rough (no remicade option when I was that young), the biggest challenge was what I let it do to my will.

Late in my 20s, I had a turning point when my brother and father asked me to go fishing for a day, something that I really was fearing because I would be away from washroom facilities for most of a day when I was going hourly. I was absolutely shocked when I got through the day without incident (I wasn't on any meds at the time). That led to me gaining confidence in my ability to work again and later start dating. At this point, I have re-established almost 20 years of work history, am now a teacher, have a wife and child. I have had surgeries and do still use remicade, but am actually in remission (or very close to it) at this point. All of what I mentioned above was done without remicade and while in some level of active disease.

You will face challenges in your relationships. Unless you battle through crohn's daily, or have a similar affliction, people just don't know. Even people who see you through your struggles may sympathize, but won't fully understand. It also does affect your moods, so try to give people a head's up when you are feeling bad so they will understand.

I in no way consider myself the ultimate role model. There are lots of things that I could do better, and there are many missed opportunities from my early years. I do have lots of "what if" moments. You will have accidents, and it takes a while to accept that fact. Many here bring changes of clothing with them wherever they go. You won't always feel great when you are with people, but staying social is in my opinion crucial. As far as dating is concerned, I wouldn't say be completely upfront right away, but let anyone you are really interested in know early on. One real benefit of this is that it will help you realise what is really important in your dating life. Real support will be crucial going forward in your life. Really watch your diet - it will be tough at your age, but with discipline you will find a good way through. Learn to take advantage of your healthy days, and don't beat yourself up on you sick days. Be honest with yourself in what you can do and cannot do - being tired can be an easy out sometimes. Don't get used to it. I feel tired almost 24/7, but life goes on and so can you. As mentioned above, check with your docs about some other medication options. If remicade was available to me at your age, I am completely confident my disease would never have progressed to the point it has (6 surgeries in 18 years, but nothing in the last 7).

Your life will be what you make of it - crohn's makes it easy to offer up excuses that are real. You have an additional challenge to go through to reach your goals, but it is far from insurmountable. You need to keep your life goals in focus. It won't be easy - there are many "why me?" moments, many times as you have mentioned that you will want to throw in the towel permanently. The last seven or eight years of my life have had a lot of bad times (persistent anemia for 3 years), but have also had the most fulfilling years of my life. Keep your chin up and work hard - people aren't given 140+ IQs to waste. Make your mark. Drop me a line anytime through the messaging section if you need.
 
Thanks to all for actually reading the wall of text, lol. And thanks shamrock. I guess all I can do is stay vigilant and hope for the best, I do know of a few people who have gotten in remission and lived completely normally for years. That's what I'm hoping for, especially since the doctor called my case pretty mild overall. It's just the mental aspect and wanting to give up out of fear. But thanks for taking the time to say all that, I feel a bit better reading it. :)
 
Sorry that you are going through all this and at such a young age. Chronic illness of any kind can make a person feel isolated and alone and it is natural to worry about what the future holds. The thing is, no one can predict the future. It seems like you are not having many symptoms right now and that is good. If you were not having abdominal pain and Diarreha,What made them want to test you for Crohns in the first place? Did you have pain?

Your doctor is right on one aspect as far as going on support forums. You are going to read a lot of bad stuff and horror stories that others have had to face, that is true. But your doctor is probably right, that most people on the forums are ones that are not doing well. Though you will find some people who are on here that are in remission and doing great. But you will end up reading more bad than good. Here is the thing, a lot of people out there who have crohns are fine and do not have all the issues. My sons best friend was diagnosed with Crohns when he was 16. He is now 21 going on 22 and he is fine, no issues at all, he does not even take any meds! He had a horrible flare when he was diagnosed at 16 and was put on prednisone and another med for about 4 months. He got better and stopped all the meds ( due to insurance reasons). Well he said he watches his diet and he has been well ever since. Also My best friend, well her MIL has Crohns as well. She has had it for years and is doing well. She has not had a flare in years. She also does not take any meds. She has never had any surgeries either. Everyone is different with this disease and how it effects them. Stress is Not good and can make any situation worse. It is important to try not to stress out ( believe me, I know this is easier said than done Lol). I have a lot of nerve telling you that, heck I should follow my own advice there :).

All I am saying is, take each day at a time. Do not try and think to far into the future. I know my dad always would tell me not to worry about the "what If's". He said life is too short for that. No one knows when their time will come so why spend the time you are here worrying about what "might" OR "might not" happen. You may be worrying for nothing. I know it sucks and it is not easy dealing with being sick, but like I said, take it one day at a time. And remember, everyone is different and will have different issues. Just deal with things if or when they come.
 
Hey forumuser, I wish I could jump through the screen and give you a hug!! How hard it must be for you to go through this, and as a teenager too, during one of the busiest times of your life.

My son was diagnosed with Crohn's last year, he was 9 years old. I think at every age there are hurdles and difficult times, I really suggest to keep posting here and getting support, it will help you so much. I think that having people who understand what you are going through, and who are not judgemental at all, really really helps.

I hope things get easier for you x
 
You sound just like me ten years ago. I was smart, athletic and also felt certain I was destined for pretty great things, and then I suddenly got really sick (like anal leakage sick) when I was 16. I'm now 26, and although some of those years were really hard, I can say for sure that they were also pretty great.

I know that this is hard to wrap your head around, but suffering (as intolerable as it is) is part of life in this world. Mentally, it's very difficult to come to grips with the idea of having physical problems, especially at such a young age, but it will get better with time, I promise. You can still go to college, you can still make friends and date, and you can still get a great job and marry someone wonderful. There are tons of people on this forum and elsewhere in the world with Crohn's who lead happy, satisying lives.

I had a similar experience with religion. For a while, I couldn't see the use of it in the face of the pain of Crohn's. I came back to it later, largely through reading lots of books by a lot of people from all kinds of points of view (atheist, Christian, other religions, etc.) CS Lewis, Wendell Berry, and Walker Percy ended up being the most important ones that I read during that time, I recommend them.

This has also helped me a lot over the years, and I want to share it with you - http://www.alpineguild.com/COPING WITH CHRONIC ILLNESS.html

Good luck!
 

Tesscorm

Moderator
Staff member
Hi forumuser,

I don't have crohns by my son is 19 and was diagnosed when he was 16.

I'm so sorry you are feeling so overwhelmed by this! It is certainly tough to work through the worries and the fears of the unknown. But, first, I totally agree with what your doctor said about forums! This is an absolutely great place to come for information and support but, the truth is, most of the people on forums are those who are looking for information and support, so it is a bit one-sided - keep that in mind when you read all the stories here! It took me a while to really understand that - I was in a total panic when my son was first diagnosed and all I kept reading about was this symptom or that one. However, the more you learn about crohns and the more you come to know the members here, you will start to realize that while there are bad days, there are also good days!!!

My son's experience with crohns seems similar to yours so far, except that I really don't believe he has worried so much about it! :ghug: Enteral nutrition was his treatment to induce remission and was then used as a supplement/maintenance for almost two years. During this time, he went back to high school, went back to playing competitive hockey, learning guitar, getting his drivers license, breaking up with a long time girlfriend (who I miss! :lol:) and finding out that being single can be a lot of fun too :ack:, going on a grad trip to Dominican and will be leaving for university in September!

The first year after diagnosis, even though he was in clinical remission, he did have random days of not feeling well (constipation, nausea, etc.)... it was never 'severe' and wasn't much different from the average person not feeling well for a few days (I, of course, was worried sick! :yfaint:). But, even these symptoms, seem to have lessened in the last year.

I truly believe his supplemental EN provided him with the nutrition his body needed and helped his body heal! Perhaps consider having one or two nutritional shakes every day (over and above your regular diet) to be sure you're getting all the nutrients you need. My son also takes krill oil (anti-inflammatory) and vitamin D every (most ;)) day.

About the meds... I sort of feel the way you do about saving the 'stronger' meds for when you need them. HOWEVER, when my son transferred to his adult GI, he felt that something more than EN was needed to eliminate all inflammation and avoid future complications. When I asked him about the stronger meds for later use, his response was 'This could help prevent complications now. If you wait until later, when there is a problem, the medication may not be able to help him then.' I don't know if I fully agree BUT, as my son was 18, his choice was to follow the doctor's recommendation (he started remicade in February and a recent MRE has shown significant improvement). So, not suggesting you make any changes nor that changes are necessary but just suggesting you try to keep an open mind.

You also worry about the future? There are lots of treatments in trials, etc. Perhaps some members who have dealt with crohns for 20+ years can share how much treatment options have changed?? The options you are being given now will change over the coming years..., you will certainly have more and better treatment options as time passes.

I also agree with what your mom has said... you will come to accept and adjust. When my son was diagnosed, I was completely overwhelmed with worry... I was so afraid of how his future would be impacted. So far, my worries have not occurred!! :D He does have to go to his remicade infusions, he does watch what he eats a bit, there have been some accommodations but, really, with treatment, he truly has gone on to enjoy all aspects of his life. :ghug: I think the more you learn, the more you understand how your illness affects you, how you can help the meds work (ie nutrition, exercise, etc.), you will gain some control and that, in itself, will lessen some of your fear of the unknown.

I hope some of this alleviates a few of your worries! :ghug: :ghug:
 
@tired - but the thing about stronger meds is, I'm worried about bumping up the ladder because that gives me less room to bump up the meds next time I have a flare. I had a colonoscopy and the doc said I was mild to moderate and my symptoms really aren't that bad. I'd hate to bump straight up to heavy stuff and then when I have a real problem there's no stronger meds to put me on/room to bump up the dosages on my existing meds. So in a way I'd almost be more worried about the future. In what ways are they disease modifying?
I think it might have been said above by someone else, but anyway - what you are thinking is absolutely the same thing I was thinking when I was diagnosed when I was 18. I thought "well, they are saying it's mild Crohn's, and I don't want any heavy meds, so let's go for 5-Asa only". The problem with that approach is, it leads to you being classified as moderate-to-severe Crohn's, potential surgery and constant problems (ANY problem at all from Crohn's is one too much, managing Crohn's and remission means you are virtually symptom free).

Getting to real remission and staying there with either of the two effective long-term meds (azathioprine/6mp or biologics) is key to a managing your Crohn through your life. And the chances that you get to long-term remission over years (and thus can stop taking long-term meds again) is so much higher than by waiting until your disease is just more severe.

I've done the 5-Asa only and constant problems (although never really big ones, just constant inflammation) route from 1999 to 2003 and then had to have surgery because of scarring and strictures in my smaller intestine. If I could go back, I would have started azathioprine and/or remicade right away, and might have been able to manage my Crohn's early on.
 
For Crohn's 5-Asa is nearly worthless and there is no evidence that it induce healing. I agree with alex_chris 100%. 5-ASA will usually not work, he will be in a flare, doctor will give him prednisone and all the same story starts to repeat itself. It has been tried already for years, why not take the different approch, either AZA/6-mp or biologics directly inducing fast healing and since it fresh Crohn's, no scarring.
 
reducing your intake of lactose and sucrose and reduce your symptoms.
go from milk to cheese, and cut every bit if refined sugar. this is basically what characterizes the specific carbohydrate diet. there is a abook called breaking the vicious cycle which can explain this diet, it has helped many people control symptom in addition to drugs.
 
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