I'm a teenager living with crohn's

 

I know that it might seem hard to keep your head up at this time, but you can live a normal life.

I was diagnosed with CD 20 years ago, back when I was 21.  Since then, I have had only one surgery, but I have been on medications for the past twenty years.  Does it bother me that I was "blessed" with CD - yes.  But the fact of the matter is that I have been able to finish college, go to law school, and maintain a good job. 

There will be bumps in the road, but there are always new medications coming out, and with the right doctor and the right meds, you will be able to control this.

Also, and I don't know if this will help much, but my grandmother once said this to me:

"If you look up, you see better, but if you look down, you will undoubtedly see worse."  The point is that no matter how much having CD does suck, you do not have to look far to find people who are a lot worse off than we are.  I know that we all wish we had 100% perfect health, but that was not in the cards for us.  I am thankful that I am still going strong at 41, and although there were some dark times along the way, I just keep plugging along, knowing that this is just one of life's curveballs with which I need to deal.

Good luck, and don't worry.  

I saw you asked how much Entocort costs. Here in Canada, without my insurance, I pay just under $200/month for mine. It's a lot more expensive than Prednisone is, but for me it's been a lifesaver. As other people have said, it depends on where your disease is, though, but it has many less side effects than pred - I haven't had any while on Entocort and I've been on it for 10 months now. It doesn't work for everyone because it isn't as strong of a drug. In my case is has mostly worked, although now I'm also taking Cipro and Flagyl for what may be an abscess. I haven't had any side effects whatsoever on Entocort, though.

I also read that sulfazine was commonly used in Canada in another post, it was one of the two drugs my doctor suggested I go on next, the other being 6-MP. There are a lot of drug options to look into, but these 2 are 2 of the more common ones to go on as maintenance drugs before trying some of the other drugs like Humira and Remicade.

When you're in remission, you should feel basically completely normal. I haven't had a full remission yet, but I've still had days where I felt exactly as I did before I got diagnosed. (I've been sick for 2 years now, so I'm still pretty new to this too). This all started when I was 19, I'm 21 now. I have been extremely blessed in the sense that so far, I actually haven't had to modify my diet. I know everyone here always talks about diet, but for me, it actually doesn't seem to make a difference, with a couple of exceptions. The only things that really bug me are beer, popcorn and lettuce at times. When I'm really sick, I can't eat anything, so it's pretty much all the same.

Ensure is lactose and gluten free by the way, to clear up the post that wasn't sure :) I'm not sure if it's every type of Ensure, so check the label, but the ones I buy are.

Things WILL get better, educating yourself has really been the key to accepting this disease for me. I'm sure you'll feel back to your normal self in no time, and hopefully you enjoy a long remission when you do. Keep in mind that a lot of people who post here are sick at the time and have quite severe cases, so don't let some of the posts here scare you too much!

Keep us all updated :)

Hi Stayingpositive, I just wanted to welcome you and give you some support. I was diagnosed at age 19 with crohn’s colitis, and went untreated for a good few years. It was tough, but I believe that if you want something bad enough you can fight for it, and you should never let this disease define you. I was diagnosed in my 1 st yr of university and I still managed to come out of the 3 yrs with a degree (and a high GPA! Yay for me!) ….. the point is, it will be tough at times, but you can completely do whatever you set your mind/heart to. I did have to ask for extensions occasionally but in general, people are very kind and understanding if you explain what is going on.   I have not had any surgeries relating to my intestines as yet (touch wood), my crohn’s is based in the colon and my type is very aggressive ….. I’ve recently had a peri-anal abscess and multiple fistulas which saw me go through a couple of painful surgeries in 2009, but the reason the complications got so bad was I was neglected by my specialist. I would say the key is to get a great team behind you and don’t stop until you find one. I let my disease lapse and I paid for it.   As for now – I am in remission for the first time in 4 years with Remicade!! It feels great. I feel normal and it is so nice to finally feel that way. It makes you appreciate life. I hope you’re doing well and please feel free to email me if you ever want to chat to a young gal going through the same thing….   Phoebs      

Hello Moderator,

I see that some of my postings have been deleted.

If you have a problem with my content why can’t you contact me directly?

I am not illiterate. I am a 55 year old Computer Programmer working for IBM.

You are violating my 1^st amendment right to speech.

If folks want to tell me what causes Chrones then they should be able to without interference. I  posted what my Doctor ‘s said the cause was. It is deleted.  

If you are blocking some of my post then you are blocking the responses.

If we all can get the information of what causes it then maybe we can get together and get some funding from the Government to target Chron’s Disease. If you tell me that there is a program and send me a URL then that would be great, but I have had Chron’s for 20 years and I have never heard of anyone compiling a list of what the doctor’s think the cause is. My point is if there is a site then we need radio and TV advertising for it just as you see on the 5:30 PM National News all the Centacor and other Drugs.

If any of the members would like to start a petition to get a list of all the Doctors compilations with their opinions of the cause then email me at the address below. I know HIPPA prevents them from giving out names and personal information but if we volunteers, this information to the Government as a whole then we have a start on the outside.  This is just to get your opinions only. Thanks, Billy

*I deleted your email so the spammers woulnd't go crazy with it.  If you click on control panel above you can edit your profile to include your email addy*

Also, I suggest you make your own post so that the original poster's post isn't highjacked so to speak.  I did not delete any of your other posts, but....Moderators have the right to edit or delete posts without prior notice that violate forum rules.  Please review forum rules to see if you possibly violated one of them.  Thank you for your understanding. 

Post Edited By Moderator (Nanners) : 1/9/2010 8:31:45 AM (GMT-7)

Hi stayingpositive,
I'm sorry I was "disconnected" and didn't see ur post earlier.
I am the Mom of a 12 year old. The best thing we have done to get her in remission is ENTERAL NUTRITION. This is not meds.
There are Clinical trails to prove it works, specially with "children", and being 14 you are still in that category :) Success rate about 90% (read Beat Crohn's: getting to remission with eneral nutrition by Margaret Oppenheimer) Our doctor was with us on this. In other countries it is the first line of attack (Japan, France, UK>>>)

Basically it means drinking a nutritional formula for a number of weeks (6 in my daughter's case) The symptoms went away the second day!!!!!!!! She had had Crohn's for 3 years. We had tried all sorts of meds, and were on the brink of Remicade.
It is not easy to do, but it works and it is worth the effort.
I have tons of advice on how to manage if you decide to do ti. You can also talk to my daughter. Just let me know.
PS: the formula she drank is E028 Splash (tasted many others and this one was the "best")