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Ulcerative Colitis
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Posted 12/27/2015 10:54 PM (GMT 0)
Hi everyone I'm 15 and was only diagnosed this year, it's so weird because before all of this I had no clue what even was ulcerative coltic.it difficult only being 15 and having this stupid diease because I should be having fun with my friends and not worrying about such a thing. I cry every night wishing it would go away that none of this ever happened . I'm always thinking about it most of the day doing research. I'm finally down to 5mg of predsione and I'm feeling really depressed and not like myself anymore. I just want this all to end and go away. I always think to myself why me why me it's not fair. I use to be this healthy and confident girl and it's taken it away from me. cry cry cry
Does anyone else always think why me it's not fair ??

Post Edited (poppyy) : 12/27/2015 4:03:19 PM (GMT-7)

Posted 12/27/2015 11:17 PM (GMT 0)
Hi poppyy,

I'm sorry you have had to join us. I think we have all asked ourselves why me at one point or another. Makes me even sadder when I see young kids struggling with it. I wouldn't wish this disease on my worst enemy.

Getting off prednisone will help with some of the depressed feeling your having. It can tend to make your emotions go all over the place.

Just know we are here for you when you need support.
Posted 12/27/2015 11:38 PM (GMT 0)
Hi poppy.
Hang in there. Prednisone can cause a variety of emotions. And while you will have down moments and this is a major life change that SUCKS, I promise you will have a normal life back. I've only been diagnosed for 2 years, and I felt very much the same. My heart breaks for you because dealing with it as a teenager is incredibly hard and unfair.
Some advice...
1) find a friend that lifts your spirit, keeps you company, cheers you up and doesn't judge.
2) be open and honest with your parents. They are your biggest support
3) try to celebrate little things and challenge yourself to find one thing a day that makes you happy.
4) reach out to this message board whenever you need it. We are here!

You will have periods of remission and be the active and confident. You got this!!!
Posted 12/27/2015 11:42 PM (GMT 0)
Im sorry you are going through this
it is tough and it stinks and its painful
a lot of the feelings you are having right now are coming from the prednisone and within a few weeks of getting of the prednisone you will begin to feel more like yourrself
please make sure to let your gastroenterologist know how you are feeling as there are meds or therapies that can help you and your doctor will know where to direct you if s/he doesnt know him/herself

obviously, prednisone is not your only issue and you need to get support, it may be a support group, friends, family or a combination of those.
check out ccfa as they may have resources for you
also look into camp oasis, I know its not for several months but im sure it will be nice to have something to look forward to if attending is a possibility. they do have financial assistance if its a financial reason that would cause you to not be able to go.

I too struggle with feeling down about getting UC. IBD is something that is hard to deal with and we see most of our friends go through life and they dont seem to have such big problems. it is not good for us to look at other people problems and compare them to ourself and than think that we are the only ones suffering. it is bad for our esteem and it also makes us apathetic people.
there are some benefits that I have gained since developing UC

one is the people i have "met" on healingwell
I have also gained a new perspective and I dont judge people as much. after being sick and hospitalized I became more empathetic towards other people and can be a better listener.
I try not getting worked up about tiny things as I know there is so much more to worry about.

I dont know if any of this will help you but sometimes just venting helps and you are very welcome to come here for venting and or support. many of us have experienced similar things and no one is phased by people talking about POOP! you can describe your poop in great detail and no one will even care, its awesome. even my nurse sometimes gets a funny look on her face when I discuss my poop in detail, but here- go (no pun intended)right ahead
Posted 12/27/2015 11:55 PM (GMT 0)
Omg Thankyou so much for your amazing words it really means a lot that people are reading my messages and are giving the time to write me something!! Yes this website is really great to let your thoughts and emotions out. I hope once I'm off this drug I can feel happy once again. Yeah it is pretty hard seeing all my friends not having to worry about such a diease while here's me always worrying.

Post Edited (poppyy) : 12/27/2015 8:25:32 PM (GMT-7)

Posted 12/28/2015 4:07 AM (GMT 0)
Thanks :)
Posted 12/28/2015 4:17 AM (GMT 0)
Yes, i felt that way and I was in my 20s when it hit me. I was like you, never heard of this illness and never had any signs that it would happen to me. No one in my family had it as far as I know. I was completely blindsided. I had surgery and I am doing great, but the only advice I can give you is, try a lot of different treatments and see if you can get it controlled. Some people do well for years and years with medication. If not, surgery will always be there. Hopefully you don't have to resort to that, but it is an option if you exhaust medical options or get sick of the ups and downs. I hope you have good support from your family. It's really difficult at 15, i would imagine, to advocate for yourself. One thing I have learned over time is not to compare myself to others.
Posted 12/28/2015 5:44 AM (GMT 0)
100%, it's not ****** fair!!!

I was 16 when I started experiencing symptoms. I felt so much shame (and sometimes I still do). My life instantly changed. I remember a girl in high school commented that I was different and looked so sad, not like the bubbly, take the world like a storm girl I was only a few months prior. I still get very sad because most of my life is spent in isolation and I've missed out on so much. I guess my biggest piece of advice is to find a way to not let IBD rob you of joy and passion. You may not get to express it as often, but when you do it has a more powerful meaning than to those who are healthy. Try not to isolate yourself. If you can't go out, have your friends come over, etc. But find joy in something....pick up a paint brush, do your make up even if you feel like crap, music, if you can try volunteering maybe once a month at a pet rescue....just try not to isolate yourself. I didn't talk about it, which only led to more feelings of shame. So reach out to people. Some will get it, others won't, but talk.

Prednisone as also a depressant so don't be afraid to tell your doctor how you are feeling. You can reach out to support groups as well. The "benefit" for you is that there's support on HW but also in person. No one had heard of this disease 20 years ago and no one ever mentioned poop! This disease has taken on a life of it's own and is getting much needed attention. Your local IBD chapter very likely has support groups, fundraisers and tips for young people. Reach out to them.

I'm so sorry you're going through this. It's such a tender age, 15. Keep going, don't give up. There is hope.
Posted 12/28/2015 8:24 AM (GMT 0)
I was always the happy and the one that would laugh about everything but that changed and it seems like people see me differently now and don't want to be around me because I'm different in personality. I would do anything in to be my old self again anything!!!!!
Posted 12/28/2015 4:48 PM (GMT 0)
It is awful this disease, especially at your age, such a rough deal! I agree with the other posters, the Pred will be making you feel terrible. The good news is that once you are on top of this disease, (in remission) you could be free of symptoms for years, it's unpredictable, everyone reacts differently to Medication. Do you have someone in your family or a trusted friend that you can talk to, share things with, as that is important as well.
Posted 12/29/2015 5:44 AM (GMT 0)
Thanks for the reply, yes I have a very supportive family that has helped me every step of the way which has really helped!
Posted 12/29/2015 6:01 AM (GMT 0)
I'm glad your family is supportive. That is great. That is something that is very helpful now and will prove to be helpful in the future. Make sure to acknowlege your appreciation to them for being supportive.

Hope you are doing better
Posted 12/29/2015 10:47 PM (GMT 0)
I always let them know how thankful I am for their help and that I really appreciate all they do for me!! I love getting replies from people it really puts a smile on my face thanks so much for replying
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