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I'm a teenager living with crohn's

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Posted 1/6/2010 6:11 AM (GMT 0)
I was diagnosed with Crohn's Disease last year, when I was 14. It was under control up until about 4 months ago when I had a really bad flare up, and i've been in denial since then. A couple weeks ago I went to my doctors and came to terms with what is, and i'm on prednisone now. I have so many questions and so much I want to know. Heres a couple,

When will I start feeling better?
How much of a chance is there that I will die from this?
Since I am so young, will it just get worse and worse as I get older?
Will I ever live a normal life?


please help, I feel so alone. No one my age knows how I feel or what i'm going through. cry confused

Post Edited By Moderator (Nanners) : 1/7/2010 2:09:27 PM (GMT-7)

Posted 1/6/2010 6:25 AM (GMT 0)
First of all, welcome to HW! I'm glad you found us...

I was diagnosed when I was 19, and believe me, I know it seems like the end of everything sometimes. That is, you're constantly asking if you'll ever be able to have a happy youth like your peers.

SO!

Yes, you will start feeling better. Are you taking anything other than prednisone? Have you tried altering your diet? Do you take multivitamins or walk when you can?

Some people do die from Crohn's, but it seems like a very unlikely end. It can cause problems, but I know that a lot of people live long and fulfilling lives in spite of Crohn's. That is, death IS a possibility, but it's extremely (emphasis on that) unlikely.

I've also heard that it actually improves as you get older. There will always be a nasty flare waiting, but it could be anywhere from one month to decades away.

And yes, you CAN live a normal life.

One year ago, I was unable to walk, unable to eat anything more than broth, and literally nothing but skin and bones. I wondered if I would ever get better. The doctors tried really, really hard to get things improved, and it's taken almost two years to get everything under control, but it happened! There have been some really difficult times, and you'll be seeing them too. That's a part of our lives. But you have to remember that it makes us stronger!

Please, please, PLEASE keep asking questions! I'd love to know more about your situation, and you'll find an answer to just about anything you can think of here. We have some very wonderful and experienced members who are more than happy to help.

I wish you the best of luck in your endeavors to feeling better, and just know that it can happen! It seems impossible sometimes, but it's very much quite the contrary :)
Posted 1/6/2010 6:28 AM (GMT 0)
stayingpostive--that is a great name because----you will be better as the predisone gets going--''you willnot die from crohns''just listen to your gi,don't stress out as much
try to relax--watch a good movie,play your video games,read a good book---read about crohns you are ''young'' thats great learn all you can eat right .rest and'enjoy life''
normal life is what is normal to ''you''---crohns people live as ''normal''as you want ok--i have had crohns almost 20yrs now--you are not alone please remember even
footballplayers.hockeyplayers,laywers and even Ihave crohns--but normal is what you make of it---if i can help just ask ok---best wishes and a healthy new year.
remrmber ask question of your gi or read ok--god bless
Posted 1/6/2010 6:48 AM (GMT 0)
LMills-

Thanks so much for all the information!

Currently i'm taking multi-vitamins, prednisone, and iron supplement, and sulfazine.
I'm pretty much home bound right now, I don't attend school and stay in the house 99% of the time. But I get my exercise by getting up to go to the bathroom all the time lol. And I try to get out and do something active when I can. I'm anemic at the moment, so i'm pretty weak, but I do my best. As far as my diet, I just eat whatever, I haven't really learned what my body reacts badly too yet.

I've been staying really strong through all of this, but my mom has cancer for the second time, and is really sick, and i'm really sick as well and I feel like its breaking me down. I'm only 15! Along with school, family life, and crohns, i've got your average teen age girl troubles too. It just seems unbearable sometimes.

I just want this darn medicine to get to work.
I want to feel good again :(

Thank you so much for your post, it really helped with my questions :)


georgialady-

Thank you for that positive reinforcement,
it helps to remember how many people are living with what I am living with,
and having great lives.
I hope to be a successful photographer when I get older, and I hope I can do that.
Thanks so much!
Posted 1/6/2010 7:44 AM (GMT 0)
i'm so sorry to hear about your mum and that you're going through this too!! i just wanted to say that it's is great that you have a goal like being a successful photographer! it is possible, no matter how low you can feel with this disease, just always remember that you have a goal to focus your energy on (other than focussing on crohn's all of the time.) Passing exams, doing well in school and getting the career you want are all possible with crohn's... you just need to accept that you have to deal with this too and that you may need a bit of extra support or it might take you a little bit longer to do the work. However, if you make the most of the good days, anything is possible (you just may need to be a little more organised than your peers!) Good luck with getting better and becoming a successful photographer.... it can happen :)
Posted 1/6/2010 7:56 AM (GMT 0)
tez25-

thanks so much :) yeah, as long and my mom and I can both get through this and get to a healthy point in our lives, that's all I care about. Focusing on something else really helps to get away from the stress, even though schoolwork isn't very fun it helps a lot. I'm starting to feel like talking to people about how i'm feeling and what i'm going through is going to be a big help in dealing with this, since my post earlier i'm feeling better already.
I just got a new camera, and as soon as I feel good enough i'm going to go out and start photographing :)
thanks for the support :):)
Posted 1/6/2010 11:57 AM (GMT 0)
It's great to see that you have a great attitude about all of this, that really helps especially in the beginning when most like myself go through denial. Just remeber to listen to your GI and take your meds
even though you start to feel better. This disease is for real and it needs constant treatment to keep it under control. You will learn as you go about which foods bother you and which don't.
Asking questions and learning about this disease helps get us all through the rough times.

Good health.
Posted 1/6/2010 1:01 PM (GMT 0)
Stayingpositive,

That is a very good name...and it does help.  I got sick when I was 15.  I missed a couple of weeks of school but got better after being diagnosed.  At 16 I got pnumonia and it flared up real bad.  I stopped going to school and missed my whole junior year of High School.  For my Senior year I got home study.  I had 2 teachers come to my house to teach me.  Needless to say, I missed out on the best years of HS.  I was alone and homebound.  I lost a lot of my friends because I never saw them...and no one back in the late '80's early 90's knew just what Crohns was.  So...I was kind of how you are now.

Now for the good part.  I stayed positive.  While at home, I vowed never to let this disease get to me.  I was going to beat it.  I stayed positive.  I said if I get to graduate HS I am going away to college to prove to myself that I wasn't going to let the disease beat me.  I stayed positive.  I did graduate..and I did go away to college.  I also went for many years without meds because I got better (although now I know better and I should have stayed on maintainence meds).  I stayed positive.

Now, I am older and my body isn't feeling young anymore.  I do have some problems and I am once again in another flare.  But I stay positive.  I am married.  I have a job.  I go out and do what I want and have fun.  I don't let the disease run me....I run it.  Going to the bathroom is a part of life...we all do it.  I don't let it keep me home though.

Stay Positive.  You can and most likely will have a normal life after awhile.  Give the medicine time to work.  Will you die from it---most likely not.  Crohn's doesn't kill...it is other things caused by Crohn's that kills and medicine is getting better every year.

I can't say when you will start to feel better.  It took me years to feel 100%.  It can take you days, weeks, years...everyone is different.  You will eventually feel better though.  And you live in a great time.  If someone doesn't understand your disease...have them look it up online..or have them come here and read the posts.  We will educate them.  Everyone here is friendly and helpful.  If you need to vent, come on here.  If you need some support..come here.  Just remember, Stay Positive, like your name says. 

Posted 1/6/2010 1:20 PM (GMT 0)
hi .. I got diagnosed as a teenager myself ...I'm 25 now and soon I'll be finishing my education...
the best advice I can give to you is to fight ... the alternative is to roll over and die
sure, there will be times when it will be hard, times when you will ask yourself "why me?" and curse your missfortune.. it will do you no good to dwell on those thoughts .. try to be positive (I hate it when someone tells me this, but its true :) )

a) I cant tell you when you will be starting to feel better... you should as soon as you find some medicine that will work for you
b) minimal
c) it depends ... at times you will be in remission or having flares .. . who knows when will those be?
d) normal? probably never ... but you can still lead a good life... I have Crohns and will soon go on to write my Phd and in my free time I rock climb ... there are many people with Crohns that managed to make the most out of their lives (my example would be shawn diamond, a climber thats my age but one of the best in the world.. even after 14!!! surgeries because of Crohns ... http://www.climbing.com/exclusive/otw2/volume3/10withshawndiamond/ )

good luck ;)
Posted 1/6/2010 2:52 PM (GMT 0)
Hi Stayinpostive and welcome to the best Crohns forum out there. I am sorry for the reasons you have to be here though. I was diagnosed at 18 and have lived with this disease for almost 35 years now. Crohns is not a death sentence. There will be good times and bad times. But you have to educate yourself about the disease so that you can better fight it. Once the doc finds the right treatment for you, you will start feeling much better. Be sure you always take some type of maintainence med, as you have to remember this is a chronic and incurable disease and must be treated at all times, or you get sick again. Another recommendation I have is to start keeping a food diary. You keep track of how certain foods affect you and learn to avoid the ones that cause problems.

I currently live on a low residue diet all the time, and it works well for me. You might want to google the diet and get some diet ideas to help you out. Again welcome to the forum and ask any questions you might have, we are glad to help out. Will definetly keep you and your Mom in my prayers.

Hugs
Gail*Nanners*
Posted 1/6/2010 2:58 PM (GMT 0)
Stayingpositive,

I am the mom of a 15 year old with Crohn's.  He was diagnosed when he was 11.  Unlike you, he does not want to talk to anyone about this disease and is pretty much in denial about it.  I think your attitude is so much healthier.

In our town I actually know of 5 - 10 kids his age with IBD.  They go to school and particpate in many activities.  My son does lead a normal life and plays ice hockey year round.  He is also very close to becoming an Eagle Scout.  He just misses a day of school every 6 weeks for his Remicade treatment.  But anyway, this group of kids (my son was not involved) organized a fundraiser for the CCFA that they ran when they were in 8th grade.  As part of it, there were posters up around school educating people about IBD.  I'm not suggesting you go so far as anything like that, especially since you are not in school,  but maybe you could educate your friends on what you are going through so they can be there to support you.

Please do not get discouraged.  When Ben was on Prednisone it was the hardest time for him.  Hopefully your disease will get under control soon and you'll be able to wean off of it.  Also know that it may take some time before you find the medication that is going to get you into remission.  We tried different medications and combinations of medications for 3 years before we got to this point where I can say that Ben is doing really well - lots of energy, feeling great, and growing (!).  And during that time he got more and more frustrated as each medication didn't work.  I think we're used to thinking that doctors have all of the answers, but there was a lot of trial and error in the process.

It also might help you to keep a food diary.  I know there are certain foods that will send Ben right to the bathroom.  A food diary will help you try to pinpoint those foods. 

So, is there a children's support group run by the CCFA in your area?  If so, that would help you find other teens in your area with IBD.  Or maybe your GI could help in that regard.  I know our GI asked Ben if he was willing to have other teens contact him to talk about the disease (he said no).  But maybe your GI could give you a name or two (with their permission, of course).  Also, I see that the CCFA has a link to a website for teens with IBD.  The website is

http://www.ucandcrohns.org/

So sorry to hear about your mom.  I hope everything turns around for you both soon.

Take care,

Nancy  (son Ben,15,CD dx 3/06; double Remicade every 6 weeks, probiotic, multi-vitamin)

 

Posted 1/6/2010 11:59 PM (GMT 0)
Hi Stayingpositive.
I agree with Bensmom. I think its great you are talking to others about this. My 14 year old daughter was diagnosed at 11. She missed the first 3 weeks of grade 7 from being in the hospital when diagnosed, so her classmates do know about her crohns. But she does not talk about it much with anyone but me. She wants to feel normal and doesn't want people to pity her and think she is "different". I totally understand this. Sometimes I wish she would read up on it herself, but then again, some of this is very scary. I'm sure you are also trying to be strong for your mom which is very admirable and mature. It will be a bumpy road, but I think you will get a handle on this. I'm new to this site too, but everyone here seems very nice. I'm sure we will talk again soon. I will keep you and your mom in my prayers also. Diana
Posted 1/7/2010 1:31 AM (GMT 0)
Hi Statingpositive,  

I have a teenage daughter that was diagnosed at about your age. First of all, as some of the others responders have pointed out, I think it's very mature of you to post here, and seek out advice and answers to this new experience for you. My daughter would never be able to even discuss her disease, and is very private about it. 

I can't answer your questions as well as some of the pros here, but I will verify that once the meds start working and get the disease under control, you'll feel as good as new. It might take a few weeks of Prednisone to get things under control. 

You might want to discuss with your Dr. some of the other questions you have. You might only have a mild case of Crohn's, which would mean you are extremely likely to lead a very normal life with proper treatment. 

Best of luck to you.

Tom. 

Posted 1/7/2010 2:47 AM (GMT 0)
Hi Stayingpositive-
I'm glad you found this awesome site. The people here are wonderful if you ever have any questions don't ever be afraid to ask them.
I was 26 when I became really ill with Crohn's. It took the doctors 3 months to figure out what was wrong with me. I was to the point that I was almost wheelchair bound because my joints hurt and were swollen so bad. Once I got in the right hands and had my first colonoscopy, they told me I had Crohn's. I was in shock and denial for a long time with it. I was scared and pretty much asked the same question as you "Am I going to die from this?" I started educating myself with the disease and would always ask my doctor lots of questions too. I am now almost 38. I have tried almost all the drugs out there, literally. Either they didn't work or I would have reaction to them. I just started on Cimzia almost 4 months ago and so far it has been working pretty well. I have had a few little bumps with it but overall I'm feeling good and I have energy. You will have ups and you will have downs. But as long as you stay postive through it all, you will get through it. It isn't a fun thing to have that is for sure. But it is what it is, so therefore we just have to learn how to handle it. Once you do that, you will lead a good life. Like others said, keep a journal of what foods bother you and don't bother you.

I will keep both you and your mom in my prayers!

Dawn
Posted 1/7/2010 2:52 AM (GMT 0)
Hi stayingpositive! I just want to share that my son was diagnosed shortly after his 15th birthday. He also was very anemic, and had been for a year and a half! The doctors couldn't figure out why the anemia persisted even after he was put on an iron supplement. Of course, finally we got the diagnosis which explained it all.

He was also on prednisone in the very beginning. He now follows the Specific Carbohydrate Diet (SCD). You can read some previous discussion threads on it below in my signature, if you wish.

As others have said, in a short time you will begin to feel much better! I am so sorry you have to deal with this in addition to your mom's cancer. Fwiw, I believe in the power of prayer and frequently pray for all the members of this forum. I will keep you and your mom in my prayers!!! :-)
Posted 1/7/2010 3:07 AM (GMT 0)
Everybody-

Thank you so much for your words of advice. To those of you with kids my age who are dealing with it, I totally don't blame them for not wanting to to discuss it like and learn about it like I am. I had no interest what so ever in talking about what I was going through, to anyone! But once I started to be more open with my family and doctor, I learned that it just makes things better and more comfortable. There's only so much you can learn from the doctors, and i'm quickly learning that involving yourself in a website like this gives you 20x more insight on what the disease is really like.
I know this is pretty far fetched and probably won't happen,
but you guys are more than welcome to tell your kids about me, and tell them that I'd love to talk to them, cause i'm sure we have tons in common.

I just started drinking ensure today,
I was told that that'd help me a lot with building my body and energy back up,
any feedback?

Thank you every body so much, I can't even describe how much better i'm feeling about everything since joining!
Posted 1/7/2010 3:27 AM (GMT 0)
Hi there and welcome to the family..i am so sorry about your mom..my daughter Cait just went thru the worst of it all when she came home n found me in a seizure i was on life support for some time..she had to do everything and she did really well even kept her grades at school up in honor roll....she is always worried i am going to leave her and i know ths has caused nuch emotional as well as physical pain for her....we only have each other...my cait now has to hv a scope done as well as they are starting to believe she may hv cd as well..this saddens me so.....you sure sound like a wonderful young lady and a loving daughter......im sure your mom is so proud of you.....maybe it would help if you n cait could yak sometime ya know ..teen things and othyer things of course....let me know and i will talk with cait im sure she would love someone to really get where she is coming from since i hv been so ill i know she is scared she will lose me......again hun you are a very mature young woman who obviously loves her mom so very much..hope you stay with us here and also like i mentioned maybe you and cait could talk...i will post to you tomorrow after i talk to her and see if you also would like n benefit from it ...be well and know we are here for you...huggles..lyn

Post Edited By Moderator (Nanners) : 1/7/2010 2:10:15 PM (GMT-7)

Posted 1/7/2010 3:35 AM (GMT 0)
Howlyncat-

That's so great you and your daughter love each other so much, me and my mom are the exact same way. Shes my best friend and I have no idea what I would do without her. I'm so sorry to hear that you're sick and that your daughter may have CD. I would absolutely LOVE to talk to her about stuff! It seems like we may be in some what of the same boat. I can't wait to hear what she says :)
Posted 1/7/2010 4:06 AM (GMT 0)
Cait i am sure would love to talk to you its hard as you know seeing mom sick and you sick..its hard for mom as well not being totally healthy to help her child..i know that really bothers me alot n i do alot of crying about it....we r in ontario so it will be later in the day that she will no doubt come on..there are other tweens teens here with cd and i am sure you will get to know them shortly..be strong honey..it will work out..huggles..lyn

.I FOR the life of me cannot remember her hw nn but she is a member here...

Posted 1/7/2010 4:19 AM (GMT 0)
Yeah, I know that's pretty hard on my mom too. But shes an amazing mom despite everything and i'm sure you are too :)
I send all my best wishes to you and your daughter.

I'll be on tomorrow for sure, so when you talk to her just let me know.
Can't wait!
Posted 1/7/2010 6:25 AM (GMT 0)
Well Stayinpositive look as like you got alot of good info and even made some friends! Just a few things from myself. I was diagnosed at age 46, I;m 54 now. I know I've had Crohn's since age 15.It was just missed and missed by Dr. for alot of years. So I've had this disease for 39 years. Trust me I'm not planning on dying anytime soon!! There's still alot of fight in this old guy. You'll live a long time, the sooner you learn how to best control your sympoms and disease the better off you be! One word of advise take Calcium, Magnesiun and Vitamin D everyday. Crohn's requires it. best of luck to you and your Mom
Posted 1/7/2010 7:42 AM (GMT 0)
 

Hey, I just joined and I was suprised to see so many teenagers that have Chron's. I have had it for 30 years. Dont be down the maintenance medicine is getting better. Mine comes and goes. I was suprised to see you on Prednisone. That one was harsh for me. I have been on Sulfalazine for 30 years. I was taking about 12 a day with meals until I had severe leg cramps one night that almost put me in the Hospital. The next day I was back at the Doctor's office and he was talking about an experimental drug that you only need to take 1 @ day, LIALDA tabs 1.2 GM. They have been a super drug. No side effects no leg cramps and you really only have to take 1 @ day. I have been skipping days for the last 2 years. If the Prednisone make you feel bad a lot or depressed then try these. I can have Ice Creame and Milk every now and then. Keep asking questions especially to your Doctor. I have three big containers of Sulfalazine sitting here that I will never take again. Stay Positive! 

Posted 1/7/2010 8:25 AM (GMT 0)
I can't wait to talk to my doctor about all of the advice i'm getting,
Grandpato2- may I ask how your experience with entecort was? my best friends dad has CD and says its like prednisone without all of the side effects.

so far being on predisone hasn't hit me too hard,
I eat a lot, and my whole body aches, but not too badly.
I have been a little depressed but nothing too bad.
as far as the sulfazine i'm not sure. I don't know its helping or not.
:/

I have a pretty general question,
since my CD is obviously acting up now,
when I start feeling better will I be "in remission"
and if not how will I know when I am?
Posted 1/7/2010 2:53 PM (GMT 0)
 

I was reading all the medications that everyone is taking and was surprised to see such a varity. It looks like the Doctors do not know what will work, unless it is different for everyone. I have not been in a CD Forum for years and am surprised to see how many teenagers have CD. For the 1st 15 years they called mine ulcerative Colitis until one day the doctors started calling it CD.

Forty years ago the Doctors said mine was caused from eating Fried foods and drinking milk. I drank a gallon every 3 days. What are the Doctors telling you teens what is the cause?

When you go into remission your stool will firm up and you will have more energy. In the restroom, the bleeding happens on your 1st visit because it has been building up while asleep and it will usually be at the end of your purge. That is when you check it to see how bad you are bleeding. Sometimes you will not see any but it will be there. Remission to me is periodic and different for everyone. My remission is about 4 good days long then a couple of days of being tired then 4 to 10 more good days.

Kick the Prednisone and tell the Doctor to give you the LIALDA, you will see a 500 % difference over the Sulfalazine. You can get Rowasa liquid suppository if you just have CD in the last 10 inches of your rectum. That will stop the bleeding within 4 days. My CD is in the transverse Colon and that is why I take the LIALDA, otherwise I would just take the Sulfalazine and ROWASA. I forgot, if you want Ice Cream or milk they make both that are Latcose Free at the store. You might as well start getting used to the taste of them now. It helps when you want that midnight bowl of Ice Cream or a Peanut Butter and Jelly sandwich with a big cold glass of milk. I am getting hungry, see ya!

Post Edited By Moderator (Nanners) : 1/7/2010 2:11:38 PM (GMT-7)

Posted 1/7/2010 2:54 PM (GMT 0)
I am currently in remission. With my remission I feel pretty good most of the time. I still have to watch my diet, but a few more things are allowed now than when I am flaring. One thing to remember though is that even in remission you must always take maintainence meds or the disease will just flare again. Hope that helps a little.
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