Can't Accept :'( Teenager - Help

[Humor]

Hi All,

So I was recently diagnosed in February with Crohn's (my backstory - on my profile) age 17.

Over the past few days I have been feeling incredibly emotional and can't stop crying. I'm not sure if this is a pred side effect or what. I'm currently on 15mg a day tapered from 40 and now am waiting to start Imuran after I get the all clear from my blood test. I'm keeping at 15mg for now, no more tapering.

Since I started pred, prior to these few days I have been feeling perfect in every way. I've had no pain, Eating anything I want, and able to have my old life back. I've felt great. Over the last few days though, I've been feeling so upset because I keep wondering if my feelings of greatness are all false due to the steroids and if I'm going to have a really tough future after I come off of them.

I was someone who was incredibly healthy and active and played sport at a really high level, now having to be affected with something for the rest of my life. I really can't cope, I really don't want to be limited with everything after the steroids. Although my doc has never even mentioned surgery or stomas etc, I personally really wouldn't be able to deal with something like that, having a colectomy/ileustomy would be the end of me. I also worry in how someone is suppose to accept someone with Crohn's if I can't even accept it myself.. I really need some advice as I'm in a real bad state.

I'm probably in denial, as i really can't accept my diagnosis. I refuse to as I've never had any genetics with colitis or crohn's, WHY ME?

Kind Regards,

 

[JaimeM]

Hey, I'm sorry you have to deal with this too. Prednisone can make anyone a moody person. But it's always hard to think your life might change. If it helps, I've been diagnosed for 9 years and have lived a very normal life. I've just recently been pretty sick with my crohns but aside from that I'm married have a successful job and have a son. (I'm 30 now) You may not be able to play sports at the level you like but you can still play. You just need to know now how to listen to your body.. There are still marathon runners that have crohns... So it's done Good luck to you!

 

[Clash]

We did have a thread that contained a list of professional athletes that deal with IBD. If I come across it I will link to it.

It is a difficult diagnosis to get your head around and I can understand your fear and worry of the unknown. Many with IBD lead healthy, productive lives and IBD doesn't preclude you from performing at a high level in sports.

Forums tend to attract those who are recently diagnosed and those that have been unable to reach remission or are having problems, the ones that have found remission and are doing well have no need to seek out a forum. So, sometimes the threads here can be overwhelming and give a slightly one sided impression. Although, if you take a look around we do have a couple of success story threads that can be uplifting to read.

Finding the treatment that is going to put you in deep, stable remission is key. Hopefully, you will be able to find the best regimen for you quickly and there will be smooth sailing from there.

Also, if you find yourself anxious or struggling to deal with the diagnosis then a therapist that specializes with chronic illness can be very helpful.

I hope you find remission quickly!

 

[ronroush7]

Not sure if this helps but sometimes I can get weepy while I am in a flare.

 

[Humor]

So have I not achieved remission yet then? I feel perfect but is that only down to the pred?

i know that this is way farfetched, but do misdiagnosis happen?

 

[Clash]

It may be that you are in clinical remission due to pred, which means an absence of symptoms. Pred is used to dampen the inflammation until the maintenance med, like imuran, can build up and take over. It can take a couple of months for imuran to reach full therapeutic levels. Most times of you were to be on pred alone it would stop symptoms and dampen inflammation but as you tapered off or shortly after you taper off the inflammation and symptoms return, that's why a maintenance med like imuran is also used.

Misdiagnosis can happen with anything but why would you think it was a misdiagnosis? If they ran the tests like scope with biopsies, blood work, etc and felt it was a definitive enough dx to prescribe pred and imuran then odds are they got it right. But if you're concerned enough you could get a 2nd opinion.

 

[Humor]

It may be that you are in clinical remission due to pred, which means an absence of symptoms. Pred is used to dampen the inflammation until the maintenance med, like imuran, can build up and take over. It can take a couple of months for imuran to reach full therapeutic levels. Most times of you were to be on pred alone it would stop symptoms and dampen inflammation but as you tapered off or shortly after you taper off the inflammation and symptoms return, that's why a maintenance med like imuran is also used.

Misdiagnosis can happen with anything but why would you think it was a misdiagnosis? If they ran the tests like scope with biopsies, blood work, etc and felt it was a definitive enough dx to prescribe pred and imuran then odds are they got it right. But if you're concerned enough you could get a 2nd opinion.

I guess I don't THINK it's a misdiagnosis, I only HOPE that it was haha. I don't know the results of the biopsies etc but I do know I had slight cobbelstone mucosa appearance but no bleeding. I love having my old life back currently. Will I continue to lead my normal life after the Imuran has built up? Or will I continue to have problems later in life?

 

[Clash]

Most GIs want the patient to reach deep stable remission with mucosal healing. This means you are in clinical remission(no symptoms, clear labs), endoscopic remission(visually clear bowels) and histological remission(biopsies are clear) with full mucosal healing. This state if attained gives the patient the best chance at long stable remission.

Everyone is different when it comes to meds. Some find long remissions with Imuran others need biologics. You stay on the med that works for you and if it stops working then the med dose is tweaked or another med is added or a med change altogether is made.

 

[Humor]

If I adapt the attitude 'It will only affect me if I let it affect me' would that help?

Like if I try and battle through and remain active even through a possible flare?

+ It scares me how many people need the toilet very frequently even when not in a flare

 

[Clash]

Again, threads on this forum can be a little misleading since people that are in remission and experience no issues have no reason to seek out a support forum.

If you are having a hard time dealing with your diagnosis then a therapist can be an extremely helpful too. One that specializes in chronic illness can provide you with support and be a sounding board as well.

The dx can be overwhelming and the mood changes brought on by pred can compound the struggle. But finding the right treatment plan can bring about remission that doesn't constrict your life.

My son is 19 (almost 20) and has had CD since age 15. Flares were hard in the beginning and he was in and out of the hospital a couple times (mostly due to extra intestinal manifestations of CD like JSpA). He's even had surgery August before last. But if meds don't get him to remission they've kept him asymptomatic. He goes to college full time, works a 30 hour/week job, and enjoys all the socials aspects of being a college freshman.

Tesscorm is the Mom of a college age boy that plays hockey at a competitive level while in college and also doing an internship or working.

Crohnsinct is another Mom that has two teens with CD. One is a competitive swimmer and runner and the other is in softball.

Hopefully, me tagging them will bring them by to share their experiences.

 

[crohnsinct]

In short...yes...you feel better because of the meds. That means they are working! You can't get rid of the disease but the meds control the disease so you can live a normal life. So it is great to hear that your symptoms have disappeared. It may take a little longer for deep remission to occur but you are on your way!

The fist year is the toughest in terms of figuring out which med or combo of meds will help you. So there may be some back and forth with symptoms. Try not to et discouraged...each step is a step closer to remission.

My 16 year old daughter was dx'd at 12. She is a USA competitive swimmer and runner. She plans to run in college. She has trained and competed through all of her flares except for the initial one that landed her in the hospital. That flare only took her out of the game for 3 weeks total. Exercise is good for Crohn's and I dare say your mental attitude. She runs two hours a day and then swims for another two hours. She rarely misses school because of Crohn's and is an honor student. So it is most certainly possible to live a very full life with Crohn's.

Occasionally you will have to listen to your body and sit out of some activities but on the right meds with controlled disease that should be the exception rather than the norm.

My 12 year old daughter was dx'd a year ago. She has not reached remission yet, clinical or otherwise. However, she rarely misses school and is a competitive softball player and just joined her school's track team. She is also an honor student.

Check out the Parents Section for the success stories thread (we like to brag on our kids). It helps when you are having a down day.

Also just wanted to plug finding a therapist to help. 17 year olds have a lot to deal with let alone adding a chronic illness in! I have seen therapy works wonders for many of the kids of parents here.

 

[Jmrogers4]

As other have said there are professional high achieving athletes that have Crohn's a few that come to mind - Jake Diekman (pitcher/baseball); David Gerrad (quarterback/american football) there is also an Olympic rower I can not remember her name right now. Another person who happens to be a fitness model from the UK is Blake Beckford.
As others have said it can come down to finding the right med and tweaking it from time to time and trying to have a healthy lifestyle. Sports are good.
My husband has been in remission on Imuran for about 13-14 years, my son it was not enough but has been in remission with Remicade for the past 2 1/2 years. He is nearly 17 and plays baseball, snowboards and works out just about every day is on student council and works a part time job. He has girlfriends on and off (the breakups have never been about Crohn's), they have all known he had Crohn's before they started dating. He eats healthy most of the time but does pig out on junk food on occasion, yesterday being the perfect example, he went to McDonalds and ate 20 chicken McNuggets, 2 double cheeseburgers and a medium fry, he feels great today.
The first year was the hardest for him and he went through a period of why me? and why do I have to be different? Now he rarely thinks about it and just enjoys life. His mantra is I have Crohn's it doesn't have me.
Pred is the drug we love to hate, it can make you feel great but the moodiness and side effects are no fun.
Good luck

 

[Ally1234]

Newly diagnosed here. I'm a little older than you at 23 but was also diagnosed in February and currently tapering pred at 25mg down from 40mg. Pretty sure I am going to be put on azathioprine also as they have already done my blood tests for it. Just waiting for my appointment on the 19th. From my experience what you are feeling is totally normal. Some days I am okay with my diagnosis and i feel that if I don't let it affect me I will be fine. Other days I want to curl up in a ball and pretend it never happened. However I was in so much pain that I was hospitalised so it is a relief to have a diagnosis and a team of people that can help me towards feeling better. Everyones journey is different and as others have said there are alot of people who live normal lives with IBD they just don't share their thoughts as much as those of us newly diagnosed.

 

[Tesscorm]

My son was diagnosed just before turning 17; he's now 21. We had similar worries about how crohns wud affect his life... I can now say it hasn't stopped him from doing anything he'd like. He started treatment when diagnosed and since then, continued playing both ice and ball hockey (competitively and regular leagues), learned to play guitar, is in his third year of university, lives with friends at school, works, goes out to clubs/parties, eats junk food, has had girlfriends and travels with friends! He's always been very open about having crohns and has told all his friends/girlfriends - he's never found that it's made any difference in his relationships. He's also dealt with med issues other than crohns, mainly from hockey - injured knee, separated shoulder and dislocations of other shoulder - these were treated and response was same as if he didn't have crohns (other than no NSAIDs for pain! NSAIDs not recommended with crohns.)

Mostly, he's reminded that he has crohns at his remicade infusions every six weeks and follow-up appointments twice a year. This does annoy him at times but, usually, he accepts that's it's just something he needs to do and he plans around the apptmts.

And, as was said above, mostly you'll find people on forums are the ones who are having problems or have questions, the ones doing well are out and about, not really thinking about crohns!

Give yourself some time to learn about crohnns and how it'll affect YOU (everyone has different symptoms, different treatments, different responses, etc so try not to expect or worry about the worst!), be patient as it does take time for meds to reach therapeutic levels and for your body to heal and give yourself some leeway if you need to make some adjustments while your body heals.

And always feel free to ask questions or just vent - the first year is the toughest, until u get back to normal.

 

[Humor]

I can't describe how overwhelmed I am with the responses i've received.

I'd just like to personally thank every single one of you as you have all been so lovely, understanding and I feel somewhat less alone now.