Looking for friends who can relate to Crohns

[Captain Fox]

Hey there. :dance:
My name is Sarah and I am 16 years old. I was diagnosed with Crohn's a few months ago- only after I almost died that is.

I spent 7 years in silent agony because I thought I was making it all up. No one would have guessed (except for the obvious symptoms, of course). I was hard working and healthy and led a generally normal lifestyle. The only thing was; I never felt right. I always felt like my insides were twisted and that something was seriously wrong with me (mentally anyway) . It was during my GCSE exams when I collapsed in a cold sweat. After that, I was pretty much in hell. I couldn't complain about the pain because it was so intense that it silenced me completely. I went back to my GP 3 times before they said I should be taken to the hospital. At that point I was 4 stone, deathly pale and barely able to stand. The next morning I had to have an operation or I would die. Simple. You can imagine how my family reacted but again, all I remember is the pain and how weak I suddenly felt. I just wanted it to end.

So now, a few months later I am still here. I'm living with a bag and I'm starting my A-levels because I managed to get great grades anyway
I'm also getting treatment and living as normally as I can. Everyone is proud of me, and yet I have changed. I can no longer be who I once was and not everyone can understand that.

That is why I would love to chat with you all and make some new friends. I also just wanted you to know my story because it proves that Crohns is nothing compared to the fire we have inside us. We can burn away our disease with determination. I really believe we can. :ghug:

 

[crs]

Hello Sarah, I'm Andrew I have 20 years diagnosed with crohn at 17 years..so i know how it is..It change you but some people can't understand.. but is not healty to stress about those people... ^_^

 

[Captain Fox]

Hi Andrew. It's nice to meet you. That's nice of you to say :smile: It's good to have people to relate to.

 

[crs]

Was good moments and bad.. 3 years i was very good not a single damn problem and now in June i relapse.. the abdominal pain was the worst..now i think i'm back on the tracks.. i hope..My doctor always tell me not to stress but damn if I can.. my family don't understand i can get stressed about anything.. they want me to be happy all the time but i can't -_- I'm weird i know.. but this is me.. (sorry for my bad english i'm Romanian)
[emoji4] [emoji4] [emoji4]

 

[Captain Fox]

I understand. I can put on a very brave face for my family but I get very anxious over it all sometimes. I'm sorry about your relapse but with positive thinking and belief in yourself you can pull through! I hope you aren't feeling too bad. Your English is very good

 

[crs]

I do the same thing I show them the very happy and brave face.... but a lots of time i just wanna be alone and i hate when people are asking me how i feel all the time.My relatives are the reason why i get stressed if they see me 10 time/ day they will ask how i feel and i hate that..
[emoji18] [emoji18] [emoji18]

 

[AnnieYa]

Hi

I was diagnosed a few months ago during my third year of uni - a week before my summer exams, actually. I'd been ill since Christmas although not as bad as you. My mum also has the condition so it wasn't such a huge unknown when things started to get increasingly worse for me.

It's good to see you're carrying on. I understand totally about things never going to be the same, it can be really frustrating having to overthink things which other people don't have to care about - like have I got all my medication? If I start feeling more sick later on today, will this choice of clothing make it worse? Do I have water or emergency food or money for them if I forget? What if I start feeling worse when I need to have my best face on?

Keep on going

 

[Captain Fox]

Me too. I like being alone and working through how I'm feeling instead of making anyone worry about me. I know what you mean about getting stressed though. The more positive you are the better and sometimes it's easier doing that on your own. Sometimes though, I think you need to talk about it with people who've gone through it Thanks for replying to my post by the way. It's nice talking to someone about it.

 

[Captain Fox]

Thanks too you also Annie Well done for working so hard through uni. That's quite inspiring! It's great to know other people understand this sort of thing.

 

[crs]

I'm glad we are talking is nice to know you're not alone in this weird world..and all those people who ask "why you are so skinny?" And when i answer " 'cause i have crohn" the look at me like i'm going to die..it happened to me last week..here in Romania is realy a crazy place to have crohn.. but shit happen and we can't change it.. just sit tight smile pretend like some crazy things don't happened and try to keep it pozitive
All the best, Andrew

 

[Captain Fox]

I agree If you ever need to chat again feel free to message me. Thanks Andrew! Hope all goes well for you.

 

[smt]

All the three of you who wrote till now,

I am sure that you would fight the disease very well. Since medicine is looking at powerful treatments in the near or medium term future - that is the impression I get here - you have every possibility of making a success of your lives. Sarah, congratulations on your excellent grades in the GCSE. You say it best when you say: "Crohns is nothing compared to the fire we have inside us." I would like to believe that.

Regards

 

[Captain Fox]

Thanks smt I really believe all that I've said. I also think your post was very logical and eases any silly worries I may have had.

 

[garethj220871]

Hello Sarah congratulations on your GCSE results and good luck with your a level studies. My name's Gareth and I was diagnosed with Crohn's in 2001 and have been suffering now for 14 years. When I was diagnosed I'll be honest and say that I'd never heard of the disease. The flare ups stomach cramps frequent bowel movements were difficult to handle but when I had an accident in a public
place I just wanted to be swallowed up there and then. I found it embarrassing and I found it difficult for a while to face people never mind go back to work. However with the help of my gp and gastro nurse and differentFuckin mancs jammy bastards...psv a Dynamo Moscow....ma nhw wedi avoidio big teams I gyd medication my symptoms were
controlled to an extent. I still suffered with flare ups and abscesses and a fistula but the biggest problem I overcame was the mental side. I'm currently awaiting an operation for a a permanent ileostomy. Its not something I'm looking forward to obviously but I look at the positive side of things that after the initial recovery period my quality of life will be much better. Reading your story I think for 16 years of age and what you've been through your a tough cookie and a very brave girl. You should be proud of yourself and like I said the mental side of things were Crohn's can cause stress and anxiety is half the battle and if we can beat that and stay strong and positive then eventually medication surgery etc will take care of the rest. Good luck and take care of yourself

 

[Captain Fox]

Thank you Gareth! All I can say to you is that you have to be a brave person to live through Crohns for 14 years and that you too should be proud of yourself. Also, I believe that having surgery will be the best thing for you as you have a little more control in social situations and others are a little more understanding after surgery. I hope everything goes well for you and that you stay positive. Feel free to chat with me again any time.

 

[garethj220871]

I will thank you. It's done me the world of good joining this forum and talking to people with similar experiences. At the end of the day we've all joined up for one reason to try and help each other cope with Crohn's disease. A lot of people I know think of Crohn's as just a little worse than a stomach bug and they think your making it out to be worse than it is but obviously we know different and that's why I'll only discuss my illness now with my consultant and people on this forum who ar all very helpful

 

[Captain Fox]

I understand what you mean. I only joined today but I already feel a lot better just talking about it so easily with people who understand. I think the worst thing about Crohns is not the physical pain, but as you said, the mental. It can be the loneliest thing in the world and yet it has actually opened doors for us who have experienced it. From my experience I have actually gained a lot more self confidence from my experience and now have no fears! Anyway, I hope you feel great after it all and don't be afraid to talk about it either! Thanks for talking so honestly Gareth.

 

[garethj220871]

No problem any time