I'm new here

[Crohns08]

Hi all!

I'm new here, I have been doing a little reading here, but my Dad has done a lot more reading here than I have. I joined because I saw what a great resource this site is. Anyways, on to my story.

I'm almost 16 years old, will be on October 22. I was apart of my school's marching band, and I played the trumpet. Throughout my life I have experienced tummy troubles, but nothing to warrant worrying, just stomache aches. In May, I woke up one morning, just like any morning, except that I had a sore throat. Come to find out, I was also running a fever. No big deal right? I'll take some ibuprofen to reduce the fever and the soreness in my throat. Well, I ran a fever almost all of that week. I'd been having diarrhea for a few weeks, off and on. So, since I had the fever, exhaustion, and diarrhea, they put me on an antibiotic, they thought I had mono.

Well, I wasn't tolerating the antibiotic, and it didn't seem to work, so they put me on a different one. At the time, my appetite diminished, I had headaches as well. So, they did bloodwork. I didn't have mono. I was anemic. I had a poor diet, so we just thought that it was that. So for a month and a half, my parents were trying to change my diet and pump vitamins in me. Well, it didn't seem to be working, and I had gone back to band practice, utterly exhausted, and dehydrated, but still trying to pursue band. I was also very nauseated as well.

So then I started having blood in my stool. I was reccomended to a gastroenterologist, and they did extensive bloodwork, an endoscopy, colonoscopy, a CT of my small intestines, and a stool culture.

After all of this they concluded from biopsies from my ileum that I had Crohn's disease. I have inflammation in my ileum. I am currently on 4 250mg caplets of Pentasa four times a day; however my father is looking into LDN( Low Dose Naltrexone) if we can't get started on that, then we are going to try entocort.

Lately, I'm still exhausted, I have soft stools, not quite diarrhea, my joints get stiff, and I have schoolwork that needs catching up on. I have been working with my guidance counselor, who has experience with Crohn's (her sister) and other IBD. She has made it to where I am taking one class online, and I don't have to go in to class until 11:00 a.m.

I'm no longer apart of my band, at least for now. I had wanted to play a part in the pit, but my Band director didn't want to invest the time in me, even though I suffered all summer through practice, and was dedicated to band. I'm not sure if I want to be apart of concert season, but I haven't made a final decision yet.

My mother got the book: Breaking the Viscious Cycle by Elaine Gottschall, and we are on her specific Carbs diet. It also says I can have as much seafood as I want, which is awesome, but that means no chocolate for now, which is horrible because I used to be a chocoholic. But so far this diet is helping me so much! I haven't really had any cramping or tummy troubles recently. So, if you haven't tried this diet, I highly reccomend it.

My avatar that I am fixing to put up is of my German Shepherds, Apollo and Zeus. Apollo is the bigger one. They are still puppies right now, but they are my babies, and Apollo has been so great with me through this. He is my heart dog, and if I am in the bathroom long, he lays down by the door, or if I'm feeling bad on the sofa, he will hop up on his own and res his head on my legs or hips. He went through an autoimmune disease as a pup as well, and was on prednisone, and I think that bonds us together, or you could think I'm crazy, either way, I feel a special attachment to him.

So this leaves me where I am today. I have a mild case of Crohn's, but I assure you, if I eat something wrong, I am on the toilet for hours with tummy troubles.

 

[mrs. vr]

Hi. Your dogs are beautiful! I can totally understand having a special attachment with a dog, they're wonderful friends.

I'm glad you seem to have things under control, and that you have so many supportive people in your life. Having an easier school schedule must be a huge help.

I'm sorry about the band, I hope that you continue to play on your own. Even if you can't be in the band this year, there will be other opportunities I'm sure.

You sound like a very mature 16 year old, I'm sorry you're dealing with this illness, but glad to make your acquaintance.

 

[GoJohnnyGo]

Welcome!

Tootled the trumpet back when I was fifteen too. I was sick the day they assigned instruments when I was in grade 7, so I ended up with the Tuba (which was bigger than me at the time). The next year I switched to trumpet (my Grandfather played it professionally, so that was my excuse).

Sucks about getting dropped from the band. Keep your chops up. Wonderful instrument.

All the tootlin' I do now is out the butt. These days I'm more into the guitar and bass, but once in a while I'll dust off the ol' horn and have a go. When I was in a band back in college, we had a couple R'n'B songs me and the sax player would be featured on.

Good luck on the diet. I'm not on the same one as you, but I have found cutting back on wheat tremendously helpful. I think once you get into the habit of eating healthy, you actually start to enjoy it. You feel just so darn better, it can't help but improve your outlook.

I think you'll find a lot of other dog lovers here too. I myself have a Labradoodle puppy and she's a lot of fun. My last dog was a Golden Retriever and he was awesome -- he knew when I felt sick and would cuddle with me.

I was 27 when I was diagnosed -- it's tough to deal with at any age, so I can bet it's even harder the younger you are. Sounds like you've got a good support network in your Mom and Dad, though. That's really important to have.

Hang out a while -- there's some folks here your age, and old fogies like me can shuffle off to the sidelines.

Good luck with your management of the disease.

 

[mrs. vr]

Crohns08, here is a pic of our doggie. He's half GSD, half Doberman, all silly goof.

 

[Crohns08]

Pen, I have cats too! Guess I left that part out, whoops! One just turned four, the other is 2 and half. Baby is the four year old girl, and Rhett the 2 and a half old boy.

Thanks guys! Guess I forgot to mention, I am a girl. The easy schedule helps a lot, especially when I am taking two AP classes, and the rest honors! I hope to continue playing my trumpet no matter what, but what I am really interested in is writing and Psychology.

The pups are potty trained now, but they used to have accidents on the carpet, which wasn't fun! It's okay though, the parents cleaned it up, and we kept a closer eye on the boys and life moves on. I hope once I am in remission I can compete with Apollo and maybe Zeus(if he has the drive) in Agilty and/or obedience.

The antibiotics I was taking, I'm not sure of, but I know one of them started with an A, maybe amoxicilin? I'm not sure on that, but I had it in liquid because at the time I hadn't learned to swallow pills. It tasted awful! I did learn how to swallow pills with sprinkles, tic tacs, and bread. I just had to learn how to push it so far back that I didn't have a gag reflex. Now I can swallow pills with no problems.

I am lucky, I have two great parents who have been doing all they can to make me better, their even on the same diet I am! Thanks for the warm welcome!

 

[Crohns08]

mrs. vr, your dog is so cute! I can definately see the German Shepherd in him!

 

[My Butt Hurts]

Hi Crohns08 and welcome!
That is great that you have such supportive parents, and how great is it that they are doing the diet with you too? Sounds like you have it under control right now, and I hope that lasts for you. I know that some teens start to expiriment with smoking and/or alcohol during high school, that can really make you flare, so I would highly recommend not to try it.
I'm a teacher at an elementary school building (K-6th grade) and the band teacher this year asked some of the teachers to play 3 pieces with the kids. I played the trumpet with them, and it was SO fun. I only took one semester of trumpet in college, so I'm not much better than the 6th graders, but it was great.
I hope you can get back into the band soon.
Good luck, stay well.

 

[Crohns08]

Thanks, My Butt Hurts!

Yep, my Parents are doing the diet right along with me! Believe me, my father used to be a smoker, and smoke from cigarette makes me ill, so no problem there! Also, I know some teens my age that drink, and they aren't the kind of person I'd like to be, because along with that, they tend to do other stupid stuff as well.

 

[katiesue1506]

YAY Dogs! I have a Weimaraner puppy... but my second choice if we didn't get her was a German Shepard. In fact, when my boyfriend and I are finally married and have a house I plan on getting one (maybe) Can't handle two big dogs in our 1100 sq ft apartment

Crohns08- You sound a lot like me when I was your age (not that I'm much older than you-20 yrs old) But I was in my school's competitive marching band (color guard) and I did competitive winter guard all four years. Luckily I was diagnosed with Crohn's AFTER all that, but don't get too discouraged that you aren't in band this year (just think of the parades you get to sit out! I hated parades!) I hated cigarette smoke and chose not to drink as well. You sound like you have a level head on yourself.

Do you plan on going to college for psychology? I have an interest in it too, but I'm only minoring in it because I don't like some parts of psychology.

I'm glad to hear you are doing pretty well on your diet! Welcome!

EDIT: wow, I used a lot of smileys

 

[jed]

welcome!

 

[GoJohnnyGo]

I like German Shepherds. The German word for them is Schäferhunden, which I think is waaaaay cooler.

 

[RHOV]

Hi, Crohns08!

Not to copy katiesue, but you remind me a lot of me too. I'm 17, was diagnosed just before I turned 16, and also in my school's marching band. I play piccolo. i hope you have an opportunity to get back into band! I had to sit out on some performances and miss our annual trip when I was diagnosed, but I can participate fully this season.

It sounds like you are smart, practical, and level-headed. I hope to see you around the forum! I'll be MIA for a while because school is killing me, but I wanted to give you a quick welcome because I'm so happy to see another girl with a similar age and situation! good luck!

 

[GoJohnnyGo]

I think it's great you have a sympathetic guidance counselor with knowledge of the disease and is going to bat for you. Too often, they're just on the lookout for the proverbial "troubled teen" and discount the normal kid going through medical issues.

Entocort is something I'm keenly interested in should I get to that point. Not without it's drawbacks of course. Guess I have a high threshold for pain, but I'm more interested in moderate medical courses of action.

Again, good luck with managing your Crohn's. Embracing the healthy eating is a good habit regardless. Once you hit 18 and get away from the McDonalds-gorging High School herd, you'll find peers into what you're doing.

 

[ladyB]

Hi! Welcome to the forum

 

[Crohns08]

Thanks you guys, I feel warmly welcomed, and it's nice to see some peers on here who also know what it's like going through all of this while trying to be in band, and trying really hard at academics at the same time. This place is also great because we have the adult members who can enlighten us teens upon their experiences, what might work, what probably won't.

It's cool to see that a lot of other people like German Shepherds too!

I do plan on going to college majoring in Psychology, and maybe minoring in something to do with writing.

Right now, I'm eating breakfast, and relaxing until I have to go to school. Let me tell you guys, AP Bio is a must study class!

 

[kromom1]

Crohn's08 - For someone who just learned to swallow pills, I can't believe you can take all those Pentasa capsules every day. I've been able to swallow pills for years, but 16 Pentasa capsules a day about gagged me every time I had to do it!! I was almost glad it didn't help me so that I could switch to a different drug!

I am a dog lover, too. We have a 10-year-old greyhound that we rescued from the local GPA (Greyhound Pets of America). I'll try to make her my picture my avatar as soon as I have time.

Welcome to the forum and good luck with your Crohn's and your studies!

Oh, and thanks for calling us "adult members" and not old people!!!

Lisa

 

[Crohns08]

Thanks,

I don't know, once I got into the habit of swallowing pills, it doesn't really bother me anymore, it was very hard at first.

I love greyhounds too! One of my friends from awhile ago had one, it was tan though, and named Ace.

lol, you're welcome, I thought that if it were me, I wouldn't want to be called old.

 

[Sparky]

Hi - I'm new too, and I've found this place really friendly and helpful I didn't have much success with Pentasa, but got there eventually with azathioprine. Entocort works for me - it's a little slow to get going, but it does the trick given a little time. I take it only now and then - usually azathioprine keeps things under control, just find that sometimes a little extra help's required.

Your attitude is excellent - I'm a bit of a Pollyana (showing my age, anyone?) and believe very firmly that PMA makes a huge difference. I don't always manage to stay positive, and I do have wallowing in self pity days, but for the most part, I think if I can stay cheerful, then it's all that much easier to deal with. it's lovely to have found this forum though, and know that if I do feel like it's all too much that I can offload without breaking my dh/bf's heart.

 

[ladyB]

08, if psych. is your major, we should make a great field study...lol

 

[Crohns08]

Thanks Sparky! Matter of fact, I think I am starting Entocort today, I don't know, I'll have to talk to my Dad, but I am pretty sure that I am. Pentasa is just not enough to make me well.

ladyB-LOL!

 

[Crohns08]

Really? My Pentasa is a 250mg capsule, that is green and blue. My Entocort looks almost the same size, but is white and red. I took it today, so far after my bathroom bout this morning and cramping no pains.. I think I ate a bad pickle.. That or I had too much sugar. I'm feeling fine at the moment. Right now, I am actually on three medications, Prilosec, Pentasa, and Entocort. My Dad is still looking into LDN, but we have to start some treatment right now because I can't even go to school. Right now I am only taking one class at school, and the rest online until I get better.

 

[helly25]

young children with crohns

Hi crohns 08
thank you 4thinking of the little 1s
You are some courageous guy .stay in there.Practice your music even if you are not well enough to play in the band all the time.I have played the piano since i was 5 .I am now a grandmother and still play.I know how important it is Little Joe is an example .He's carrying on regardless at the moment !!!! helly

 

[Crohns08]

Update

Just thought I would update you guys on my story!

Well, my bloodwork has been coming up and I believe I am no longer anemic. So they pulled me off the pentasa. So far so good. I only had one bad spell because my iron made me throw up. Other than that, I have been great all day! (Iron was two days ago.) So, I have a doctor's appointment in a few weeks, and we'll see how I do off the pentasa. Now I don't have to take like hundred pills a week. (I'm not exaggerating.)

Now I'll just have to take LDN once a day, and then three vitamins per day once I get some more in. Things are looking up! My creative writing class started Thursday, and the teacher seems really nice. I informed him of my condition, and he seems to be pretty understanding. My latin teacher is awesome! He talks to me from time to time, and it's nice when teachers care. Not when they are obligated, but because they like you as a person. My other teachers are like that too, but I don't ever talk to them really except for monthly calls and oral components because they are from virtual school.

I've been doing push ups. I'm determined to get back into decent shape. A girl's gotta dream, right? I want to get involved in a relationship again, and I want to get myself in shape so I'm confident. Not only inwardly, but on the outside appearance as well. I want to look alive, not like death!

So this is what I've been up to. That, and listening to David Cook, a lot! I know he's not everyone's cup of tea, but I love his music, especially the songs he wrote for his brother. That's writing at its best. I've also been re-reading the Twilight series for school. My fellow classmates pressured our teacher into reading the book, so we will be discussing it. I've also been preparing for my semester exam, which I will be taking today for AP US History. Wish me luck! I'll certainly need it!

I can't really sleep, which is why I'm up past two in the morning. I really just want to write my feelings about this whole journey, but it would be so long, but worth it I think. Writing is my passion, and usually my best work is when I write about something I have experienced because I can usually make the audience feel compelled to read my work because they feel the emotions that I feel while I'm writing it.

I know I don't post often, but when I do, you guys are great! No one understands a crohny better than you guys. It's hard to make other people understand. Half the time they think they understand, and then I have to shed a little light for them, and then they pity you, and it's rather annoying. I don't like pity, which is why I am so glad I have my best friend. She's so awesome, and she always knows when I'm upset or depressed. She's just amazing, I don't know what I would do without her.

This is a pretty long post, but I think it's a pretty good summary of my journey through Crohn's so far.

 

[mikep315]

asacol

ive takin asacol and it does not digest for me goes in 1 way comes out the same the best med ive taken would have to be imuran and prednisone but i hate preds sides