Young Person Newly Diagnosed with Crohn's

[KateH1]

Hello there,
I'm a 19 year old Female from the UK and today I was diagnosed with Crohn's.
I was told before today that it was likely that what was causing all my illness would be UC or Crohn's so I've spent a few weeks doing research online to see what I'm about to face but found most websites just tell me the same thing and hearing from people who have experienced Crohn's first hand would be more beneficial.
So I just wondered if anyone would be able to give me some advice on where taking medication and trying to put my disease in remission is going to take me? (As now diagnosed I will begin a steroid treatment).
Also being diagnosed so young I worry about how this is going to affect my future as currently I'm physically too weak to work etc..
Would be great to hear from anyone who can relate,

Kate

 

[lgpcarter]

Hi Kate,

I can definitely relate. I am 33 now, but was diagnosed when I was 20 after being sick for quite a while. I am in my second year of university 4 hours away from home, but thankfully in a town with excellent GI docs. I did graduate and have since completed 2 master's degrees as well and have a job that I love, a husband and a daughter.

I can't tell you where your medication will take you or how long remission will take you to achieve, unfortunately. The extremely frustrating thing this disease (well, one of them..) is that it is all so individual. I have disease in both my large and small bowel, with fistulas. I had extremely good luck on Remicade for a number of years before having a reaction to it.

I know things seem pretty uncertain now, and you are probably feeling pretty awful, but there is lots of support to be found here and lots of resources. Things will get better. It may take time, and you will have some days where you feel like a giant bag of crap, but they will get better. It may take some time to achieve remission. I know it was almost a year for me for my first remission because I was so sick when I was diagnosed.

What medication are you taking?

Feel free to PM me if you have any specific questions.

 

[McM17]

Hi,

I'm also 19, and I was diagnosed with crohn's in December 2012! I had been having symptoms on and off for four years before being diagnosed. It is a bit of a pain dealing with all of the medication at first, but the steroids should really help! They made a huge difference for me. I am not in remission from this flare yet, but I had been in remission before, and when that happens I feel completely normal- it might take a while but it does happen!

I have been too sick to work as well, but with the right medicine that shouldn't always be a problem. It can take a while. I am currently taking remicade and have tried pentasa and cipro/flagyl since being diagnosed. Being patient is probably the hardest part. Many people take a long time to find something that works, but it helps for a long time!

I hope you find something that helps soon! Good luck

 

[723crossroads]

Every single person has a different story and different reactions to medications. What works for me may not work for you. It is all a guessing game and finding a great GI is what can make all the difference in the world. Taking supplements such as fishoil. Vitamin D3 and zinc amongst others also helps. Following a diet that helps keep your symptoms at bay also. Keep a food journal till you see what foods upset you and avoid those after that. There are so many things to consider to help, but being your own best friend and taking care of yourself is priceless. Get the rest you need and drink fluids that don't disagree with you to keep hydrated during flares. We are all here to lend support whenever you need it! Welcome to the forum Kate!

 

[evescott]

Hey!
I'm 19 too & I've had Crohns & UC for 9 years now!

I've done college & worked but I'm currently too poorly to work but I'm planning to get back into studying when I'm better & study nursing so when you're in remission it shouldn't hold you back at all & you shouldn't let it!

Google can have some of the scary worst case scenario stuff that can be a bit of a knock to your confidence but for the most part take it with a pinch of salt as, like has been said, the disease is different in everyone!

Feel free to message me anytime with absolutely anything even if it seems daft.

I hope you start feeling better soon!

 

[lgpcarter]

How are you doing, Kate? Are the steroids helping?

 

[Essieluv]

I can relate to you hun. I was diagnosed a while ago (two years ago, when I was sixteen), but I still struggle with issues like you. I worry about a job, because I physically can't work right now and depend on my parents for everything. It's hard, but it's not all bad. I found that with my diagnoses, I have really gotten closer to those who love me and have learned just how important the "little things" in life really are. I have a greater knowledge of what real happiness is, because I know that even when life is hard, you can still be happy. Hang in there hun!

 

[LMBG2k13]

Hey Kate I was diagnosed with severe Crohn's as a kid . I was at least 8 or 9 maybe. Anyhow I'm 18 now and I've been in remission for two years . I've had surgery and I'm now on Humira . But I still have long lasting effects I'm afraid I'm flaring up again, but ask your GI specialist about Humira or 6mp or Remicade, I've heard they're effective .

 

[KateH1]

How are you doing, Kate? Are the steroids helping?

Hey

Sorry I haven't been active on my post, I've been busy with hospital appointments etc but I'm sure you all understand!
I'm coming down on my steroids now, currently on 5 a day and now I'm experiencing horrific migraines and sickness

 

[KateH1]

I can relate to you hun. I was diagnosed a while ago (two years ago, when I was sixteen), but I still struggle with issues like you. I worry about a job, because I physically can't work right now and depend on my parents for everything. It's hard, but it's not all bad. I found that with my diagnoses, I have really gotten closer to those who love me and have learned just how important the "little things" in life really are. I have a greater knowledge of what real happiness is, because I know that even when life is hard, you can still be happy. Hang in there hun!

I'm in exactly the same boat right now, my parents and my boyfriend are supporting me at the moment and I feel so bad about it but there is nothing I can do, I'm way too ill to even think about getting a job. Everyday with crohn's is a different I'm being massively supported by all the people around me which is definitely a huge help!

 

[KateH1]

Hey!
I'm 19 too & I've had Crohns & UC for 9 years now!

I've done college & worked but I'm currently too poorly to work but I'm planning to get back into studying when I'm better & study nursing so when you're in remission it shouldn't hold you back at all & you shouldn't let it!

Google can have some of the scary worst case scenario stuff that can be a bit of a knock to your confidence but for the most part take it with a pinch of salt as, like has been said, the disease is different in everyone!

Feel free to message me anytime with absolutely anything even if it seems daft.

I hope you start feeling better soon!

Thanks for getting in touch
It's amazing to see someone like you who has been through so much with Crohn's and come out so positive, it definitely gives me hope for the future!
You're an amazing person for going through so much and I think chatting a bit more too you would be a great help!
Have you had to take the steroid prednisolone? I'm currently suffering from awful sickness and migraines from it and wondered if there was any way to avoid them?

 

[mcate238]

Hey Kate! I'm 23 and was diagnosed when I was 10. I've been through it all and am currently in one of the worst flares ever. I've been able to lead a relatively normal life despite Crohn's until now. Let me know if you have any questions I can answer--feel free to PM me!

 

[Shaanaleem92]

hi, im 20 was diagnosed with Crohns when i was 19 , it took the doctors 8 months to diagnose me, by that time my crohns got worse , it became severe. i had steroids, for 8 weeks. with no effect, i then had a stronger form of steroids, with no effect. i was then put on azaithroprine (cant spell) 100mg a day still taking that... i was also given humira injections in December 2012, which did work but only minimal. then i had to go for surgery, i had 20 cm of of small intestine removed. and currently have a stoma/ileostomy waiting on reversal in December 2013.
before surgery i was in agony with pains all over my abdominal area, lost weight, and became weak. now thankfully after op , i feel normal once again, back to normal life... i left uni last year due to crohns , now i have just reapplied to uni agan and cant wait to start my life again , doctors said if they had diagnosed my sooner, i wouldn't need surgery and the medication would have done the trick.

My advice, dont worry, it daunting and horrible but hang in there, there are treatments available and they will work one way or another, before you know it you'll be back to your normal fitness and able to work.... i lost 3 stones because of crohns and couldnt even stand up on my own feet... now im well i can do everything i used to do , and even looking into doing new hobbies

i only take aziathroprine now :dance:

 

[Mylo]

Hi Kate,
I am new to this site too.
Well I have been diagnosed with Crohns since November, but I have been having symptoms for more than 4 years. For me, Crohn really does have a rather great impact in every aspect of my life. First, there is family. Being constantly tired makes me moody and causes a lot of arguments with them.Second, my friends. I can`t just go anywhere before "doing my own thing in the bathroom" ,which can take up to an hour, if you know what I mean.
And lastly realtionships with guys. I just can not relax myself with a guy that I am dating for a short period of time, especially when I need to go to bathroom and I try to get out as soon as I can,but it usually takes me like 10 -15 mins.
The worst part is explaining why I stayed that long, so I rather make up stories that I felt sick or whatever.I feel so embarassed of course I would rather run for it.utahere:
Anyway, in days of flares I recommend you not to go anywhere, and I doubt that you can because,well at least for me, I can not get out of my bathroom XD
Good luck with it btw, and I hope that you cope with it