Experienced crohns patients needed!

[lauren4]

i was diagnosed with crohns in the end of this past june, i am 16 years old and about to start what is meant to be the best year of my life.. senior year.

i have been on about 6 different medicines including antibiotics, antacids, steroids etc. nothing has seemed to work. So yesterday i was put on prednisone... what it said to be "the devils drug"

when i was first diagnosed i told myself that it was okay and that i was strong enough to have to deal with this. Ive come to the point where i am wanting to quit my year around sport because i am just so tired all of the time and I'm not emotionally stable enough to have to deal with yet another extremely stressful thing. My mom wants me to just keep holding on until i go into remission because i will feel like "a whole new person"

i just need to know that everything is going to be okay soon because my medicine is actually making me feel worse, and especially now that I'm on preenisone i feel like i am going crazy. i can't sleep and i CANNOT STOP CRYING. i just need someone to tell me that it will get better, i cannot talk to my parents about certain things because well.. they just don't understand.

thanks for listening

 

[Catherine]

My DD was dx with Crohn's as a 16 year old. What medicines have you tried?

The thing about prednisone is that when is works it work very quickly. My DD went from severe pain and sleeping 16-20 hours day, to back to school within a week of starting prednisone.

2 and half year after being dx with Crohn's Disease she is in remission. Se is now in first year of university and working part time as swimmer teacher.

 

[Saralr]

Prednisone can be really tough on some people when they start taking it. My first week was hard because I was so tired but couldn't sleep because of the prednisone. The steroids are just temporary though. Your sleep will get better and as it makes you feel healthier it will be easier to handle.

Don't make any big decisions your first week on prednisone. Give it a little bit to start working first. I understand your wanting to give up sports and I see your mom's point too. My personal thought is that you can't wait for remission to make decisions because it may not come soon BUT you do need to see if the prednisone will help first. If you decide to quit now and you start to feel better next week (or in 2 weeks) that might be something you'll really regret. You don't want to make any big decisions when you first start prednisone because it can really mess up your emotions. (I hope this makes sense. It's 3am. I tend to ramble at 3am.)

How long does your doctor expect you to be on prednisone?

 

[rollinstone]

Things will get better kiddo, just take each day as it comes, there's a cure on it's way, your best years are yet to come!

 

[DJW]

Hi Lauren and welcome.

Sorry you're having a rough time. Its a lot to take in. There is a grieving process and a time of adjustment. Give yourself time. It can take some work to find the right med combination that will work for you. If you're not doing it keep a food and symptom journal to see what foods don't agree with you.

You're in a flare. Newly diagnosed and feeling crappy. Don't lose hope. I was diagnosed young. I still went on to university. Sports have always been a part of my life. I need to make adjustments when flaring but that's it.

Keep asking questions. Knowledge is power.

Sending you my support.

Dave

 

[UnXmas]

It's hard to predict how you'll feel in the future or how successful your treatment will be. It varies hugely from person to person. What you almost certainly will find though, is that you adjust to having this disease, mentally and physically. You'll find ways to deal with the physical symptoms - keep trying different medications, there are lots out there - but you'll also find how to manage your lifestyle around them. For example, you may benefit from experimenting with diet, or learning times of day when your symptoms are less.

You'll learn other things too - you'll learn how to explain your disease to others, you may well find, after a while, that the disease doesn't dominate your thoughts as it may do at first. If it does sometimes stop you doing activities you like, you may be able to find new things that you can do.

i just need to know that everything is going to be okay soon because my medicine is actually making me feel worse, and especially now that I'm on preenisone i feel like i am going crazy. i can't sleep and i CANNOT STOP CRYING. i just need someone to tell me that it will get better, i cannot talk to my parents about certain things because well.. they just don't understand.

Prednisone can make you feel like you're going crazy - you're not though. When you start tapering prednisone, your mind will go back to normal. I couldn't sleep on prednisone and my doctor eventually prescribed me Amitriptyline, and I could sleep well again - there are various sleeping meds you can ask your doctors about or buy over the counter. It's just that sometimes you have to try a few things to find remedies to the various side effects pred can cause. If you're really feeling that you can't cope with the emotional side effects of pred, talk to your doctor. Some people just can't tolerate prednisone, for various reasons, but there are often alternatives, or your dosage may be able to be reduced.

Your parents are probably having to learn a lot about this disease too, though in a very different way than you are. They may come to understand it a bit better, and understand why at the moment the things they are saying are unhelpful. Don't give up on talking to them right away though. Tell them about the effects prednisone can have on someone's emotions (or send them links to webpages to read, if you don't want to talk about it with them yet), and let them know that you need them to be understanding and recognise what you're having to cope with.

 

[Robrich]

Hi Lauren
All of the advice above is really really good advice
I too was diagnosed at 16. They said it was UC but some years later it's CD. I had to drop out of my fall senior semester to spend a total of 5weeks in the hospital
Back then 1965 all they had was cortisone. I had constant Cramping with bloody D , anemia. They gave me ACTH (cortisone) injections n the hospital. Got me in remission, sent me home on pred relapsed 2weeks Later and back in the hospital.
Finally they got it into remission with aggressive cortisone and prednisone. Saved my butt!
What I learned is that it is best to be aggressive with treatment ASAP and then wean off of it.
I had some minor flares over the next few years. Learned more about taking care of myself went on a macrobiotic diet and had remission no drugs for about 3years wandered from my healthy lifestyle and the disease reared it's ugly head.

Accept your situation, learn and grow from it you will be a better person for it.
Try not to give up your sport or if you have to find a replacement. Exercise and sweating really helps with the prednisone side effects and overall quality of life.
Learn about diets and what works for you.
I just turned 65. Had one colon resection 30 yrs ago and for the most part have had a full active normal life (except for all the silent suffering along the way)
Good luck to you. You will be OK. Lots of new treatments coming.