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.
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.