- Joined
- Nov 9, 2012
- Messages
- 27
Keep Crohn's Lighthearted; new to the forum, not Crohn's.
Ive never used a site like this before, but I had some questions and fgured, what better way that this to get them answered! And I think it'll be nice to talk to some others like me. XD So, here is me:
Age: 16
Sex: female
Diagnosed: Age 6, just had my 10 year anniversary, how exciting!
Severity: mild-severe
Meds: remicade and pentasa currently, but al lot of others in the past
Country: USA
So, I have had Crohn's for pretty much my whole life. (Now, why does Crohn's show up as a typo in a Crohn's chat forum?
) I was diagnosed in second grade, but I'm pretty sure that I had it long before that. It's a pretty bad case, and I have never been in remission for more than a few months. My doctor is great, but this is starting to get old.
My regular symptoms are: joint pain, swelling so I can't go, incontinence, urgency, fatigue, mouth sores, diarrhea, the average Crohnie stuff. Some weird things that have happened to me are: blood clots, so my kidney died; kidney stones at age 8, making me the youngest recorded person to have them in northern VA, woohoo. I have a narrowing in my ileum or cecum or something, and a fistula hanging out in there somewhere too. I like to call it my ground-beef tummy. I seem to be constantly flaring, and am kinda sick of it. I'm on remicade every five weeks at the moment and take pentasa three times daily with a swig of miralax in the evenings to wash it all down. I also take an uncountable amount of vitamins and stuff, and I refuse to list them all. I am a firm believer in the low-residue diet, it's life changing! I have tried every medication under the sun, it seems, and nothing works. I think I will have to get surgery other nearish future, fingers crossed on that one.
I am in high school and live at home with my parents, sister, and two birds. I am cheerleader and try to do as many sports as I can when my body decides to behave itself. My friends are great, but I don't think they really understand what Crohn's is, or what it is like for me when I'm sick. I did not tell any of my friends about having Crohn's until last year, when I missed a lot of school for it and they started to get worried. I think they thought I was dying, or crazy. I was constantly accused of being anorexic, which I am not, because of the weird foods I have to eat and my weight. Telling my friends may or may not have been a good idea because the other day a random person that I do not know came up to me at school and asked me for advise on taking pills. I guess word spreads far... I AM quite talented at the multi-handful swallow. Oh well, I am glad to help.
I just had the extremely unpleasant experience of a 504 disabilities plan meeting with all my teachers at school. It consisted of all 7 of my teachers sitting in a room with my counselor, school administrator, and bat-shiz crazy parents in a small hot room for 45 minutes while I almost broke down crying an told them about my many issues. It actually turns out that one of their daughters has Crohn's, and another one's mom does, small world.
My parents are so unbelievably protective it hurts. I mean, can't a girl spend more than five minutes in the bathroom without her parents swooping down upon her like hell-bent war lords or something!? My poop is VERY interesting, but do you really have to look at it? Ugh. But, I love them and could not get through this without them. Especially when it is three in the morning and the power is out so it's 105 degrees in the house and dark and the enema I just gave myself backfired so my mom is cleaning my poop off of the cream wall in her bathroom. Good times.
I try really hard to look at this stuff with a positive attitude. I would probably frankly go nuts if I didn't. Laughter is the best medicine right? And if you aren't laughing, you're crying with this sort of thing. I am a big supporter of potty jokes, which are all the more funny when they are 100% true, which is often the case when it comes to us cronies. (Such as: "well, the shiz just hit the fan", which, quite literally, happened to me a few weeks ago. It made a mess...)
Anyway, I guess that sums me up! I have lots of questions to ask and hope I can answer some too. I am a seasoned professional at this stuff by now, but new symptoms are still showing up all the time in my poor little body. XP
Ive never used a site like this before, but I had some questions and fgured, what better way that this to get them answered! And I think it'll be nice to talk to some others like me. XD So, here is me:
Age: 16
Sex: female
Diagnosed: Age 6, just had my 10 year anniversary, how exciting!
Severity: mild-severe
Meds: remicade and pentasa currently, but al lot of others in the past
Country: USA
So, I have had Crohn's for pretty much my whole life. (Now, why does Crohn's show up as a typo in a Crohn's chat forum?
) I was diagnosed in second grade, but I'm pretty sure that I had it long before that. It's a pretty bad case, and I have never been in remission for more than a few months. My doctor is great, but this is starting to get old.My regular symptoms are: joint pain, swelling so I can't go, incontinence, urgency, fatigue, mouth sores, diarrhea, the average Crohnie stuff. Some weird things that have happened to me are: blood clots, so my kidney died; kidney stones at age 8, making me the youngest recorded person to have them in northern VA, woohoo. I have a narrowing in my ileum or cecum or something, and a fistula hanging out in there somewhere too. I like to call it my ground-beef tummy. I seem to be constantly flaring, and am kinda sick of it. I'm on remicade every five weeks at the moment and take pentasa three times daily with a swig of miralax in the evenings to wash it all down. I also take an uncountable amount of vitamins and stuff, and I refuse to list them all. I am a firm believer in the low-residue diet, it's life changing! I have tried every medication under the sun, it seems, and nothing works. I think I will have to get surgery other nearish future, fingers crossed on that one.
I am in high school and live at home with my parents, sister, and two birds. I am cheerleader and try to do as many sports as I can when my body decides to behave itself. My friends are great, but I don't think they really understand what Crohn's is, or what it is like for me when I'm sick. I did not tell any of my friends about having Crohn's until last year, when I missed a lot of school for it and they started to get worried. I think they thought I was dying, or crazy. I was constantly accused of being anorexic, which I am not, because of the weird foods I have to eat and my weight. Telling my friends may or may not have been a good idea because the other day a random person that I do not know came up to me at school and asked me for advise on taking pills. I guess word spreads far... I AM quite talented at the multi-handful swallow. Oh well, I am glad to help.
I just had the extremely unpleasant experience of a 504 disabilities plan meeting with all my teachers at school. It consisted of all 7 of my teachers sitting in a room with my counselor, school administrator, and bat-shiz crazy parents in a small hot room for 45 minutes while I almost broke down crying an told them about my many issues. It actually turns out that one of their daughters has Crohn's, and another one's mom does, small world.
My parents are so unbelievably protective it hurts. I mean, can't a girl spend more than five minutes in the bathroom without her parents swooping down upon her like hell-bent war lords or something!? My poop is VERY interesting, but do you really have to look at it? Ugh. But, I love them and could not get through this without them. Especially when it is three in the morning and the power is out so it's 105 degrees in the house and dark and the enema I just gave myself backfired so my mom is cleaning my poop off of the cream wall in her bathroom. Good times.
I try really hard to look at this stuff with a positive attitude. I would probably frankly go nuts if I didn't. Laughter is the best medicine right? And if you aren't laughing, you're crying with this sort of thing. I am a big supporter of potty jokes, which are all the more funny when they are 100% true, which is often the case when it comes to us cronies. (Such as: "well, the shiz just hit the fan", which, quite literally, happened to me a few weeks ago. It made a mess...
) Anyway, I guess that sums me up! I have lots of questions to ask and hope I can answer some too. I am a seasoned professional at this stuff by now, but new symptoms are still showing up all the time in my poor little body. XP
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