New. Here's my story.

Hi,

I've dealt with stomach issues all my life and my doctor chalked it up to IBS which honestly, I fit to a tee. Last month (the first of the month) I got horrible stomach pains and ended up in the hospital. The doctor thought it was my gallbladder so was sent for an ultrasound where they found nothing. That was followed up by a ct scan, xrays, etc. still nothing. I was sent home being told it was just "a bug."

The symptoms persisted and while I thought certainly I had IBS before, this feeling was so unique. Horrible gas pains everyday, bad enough that I haven't left the house or lived my normal life. My family doctor sent me to do stool samples which thankfully came back clear of blood or anything like that. I was then sent for a barium enema and the very next day (today) was called by my doctor who said "it's looking like early Crohn's."

My best friend has Crohn's and while seeing the toll it has taken on his life through the years, there really was no way to sugar coat it for me. I know what I have ahead of me. I have an upper gi series on the 26th and then meeting my GI specialist/surgeon on the 31st for a consult and to book my colonoscopy so they can do a biopsy and see where we're at.

Everyone has tried to be supportive but if I hear one more story about a friend of a friend or a coworker's daughter who have Crohn's and how their life is so absolutely magical and awesome, I will snap. Right now I just want to be angry and wallow for a minute which no one wants to give me the time to do. I just keep being told how strong I am and that it will all be okay. I know I'm going to get through it and take it day by day but right now.. just not what I want to hear.

Anyway, I figured this would be a good place to start so.. Hello!

Welcome MDCA!! You certainly have a right to vent here! I hope you do well with your treatments and your life is not drastically altered. Good luck! Let us know how it goes and what your treatment plan is.

Hi Dexky, my name's Marina. Thanks for the welcome, I'll keep you updated.

Hi Marina! No sugar coated anything but gas fumes here! :welcome:Sorry, and welcome to hell. oo: The good people here all understand and the only people we know who has Crohns is US! You will find a place here and even advice if you want it.

Welcome Marina. Look after yourself.I've had Crohns for 37 years.Learn as much as you can about your disease. Karen xo

Thank you so much. I have a feeling this forum is really going to help me.

Hi Marina and welcome! Throw yourself a good pity party - you deserve it. I like to host one every so often myself. HOWEVER, try not stay in party mode too long. It only makes your life more difficult. Don't get me wrong, you are certainly allowed bad days, but try your best to look at the bright side. Being upset and causing yourself anxiety only makes your symptoms worse.

I take it day by day. If I have a good day, I embrace it and enjoy it to the fullest. On a bad day, I just try to push through hoping tomorrow will be better. Taking it one day at a time has helped me so much.

Hi, I say be angry! Life has thrown you a real curve ball and it sucks. I firmly believe you need time to scream or cry or whatever you need to do to get it out of your system before you can move forward to acceptance. Not everyone will agree but I am with you girl you have the rest of your life to come to terms with it you should be allowed a little while to rail against the unfairness of it all. My son who is 12 was diagnosed two weeks ago today and if one more person tells me it could be worse and at least it is not cancer I swear I will swing for them!!!

HI Marina , welcome to the forum. i have had crohn's for 21 years now and it still flares up time to time and it's very frustrating. But, like the others said take it one day at a time. i have had to come to grips with the illness. but , there is life outside of crohn's. i hope your tests come out good. if it is early stages of crohn's at least your catching it early and be able to control it with diet alone or medications. best wishes and keeps up to date on your condition.:rosette2:

scott

Thank you all. Someone finally got it yesterday. They heard the news and left me alone for a while. When I finally saw them all they said was "I know that's not what you wanted to hear, and I'm sorry." I said "thank you for not having a story about someone you know with Crohn's and how awesome they're dealing with it all..." he says "What would it matter? they aren't you." I cried like a baby First person to not have some chicken-soup-for-the-soul answer or story ugh.

Hi welcome

Thanks Jenn

Hi Marina,

I smiled when I read your post. I too am so sick of people saying "Oh well it could be worse" or "so and so did this and they're fine" I seriously have Ally McBeal moments in my head when faced with these types of people.

Yes, it could be worse BUT THIS IS MY REALITY!!! I have no idea what the future holds and get really tired of going shopping worrying about my next need to run to the loo, or the delightful sounds my stomach makes. Not to mention the pain and discomfort and the days where I have to ask my son not to lie on top of me, or the days I physically cannot get out of bed!!! UGH!! Rant over!!!

I don't post alot but I read so much and I am so grateful for the people on here who know how I feel and share their experiences and advice!!

I hope you are feeling better hon!!

Hey MDCA!
I must admit as angry as you are, your post did make me giggle. I know that feeling well. I was diagnosed ten years ago when I was in my first year at high school so I was only 11. The number of teachers who told me that they had friends with crohns and they now hav children was unbelievable. Now i know i'm going to sound awful here... but... Did i give a toss? NO! I was 11! The thought of having children was ridiculous!
There is a celebrity on a soap over here who also has crohns and he has three children apparently, peoples consolation seems to be "ah Cain has crohns and he has THREE kids!". This has turned into a bit of a joke between me and my friends. somehow being able to have children makes you normal? I do like to point out that crohns isn't a reproductive disorder!
People do try, but when you're feeling crap, as nice as they're being, you just wish they'd shush
As much as you will hate to hear this, it does get easier. I still have my mad days with it, but not like i did at first Just go with the flow, if you wanna be mad, be mad, but I found it's exhausting and unproductive after so long.
chin up!

Haha agreed no :, and who's to say you give a crap about kids? Maybe you care more about being able to eat a Big Mac and maybe you can't anymore!

Also, that Emmerdale guy sadly lost his mother when he was 9 years old. She died during a surgery for... wait for it... Crohns. So as rare as that is (I hear CD has a 1% fatality rate which is probably significantly less than that of DRIVING), this disease CAN be very serious and aggressive and derail a person's life completely. So an 'it will all be fine' response can be really insulting. How do they know? a) it's different for everyone who has it, and b) they DON'T have it, so I don't think they're qualified to read our bloody fortunes lol.

MDCA, people need to give you the freedom to to be really pissed off if that's how you feel. Hopefully they'll give it you but if not, you'll always have it here . Hope you're feeling well and living a relatively trouble-free life soon enough. It can and does happen for a lot of Crohnies - in fact a friend of my mum's has Crohns and she-- I'm kidding. But seriously, hope things work out. Either way, you can bitch about it here until you're blue in the face!

*sigh of relief* THANK YOU. It's so incredibly important with this disease, and with LIFE, that someone be able to tell you "I hear you, what you have to say is valid, and you are completely entitled to speak your peace." It means more than you know, thank you!

Ian- Your post made me laugh so hard, that was amazing. Thank you for your words and I look forward to getting to know all of you on here much better in the future! You guys are really amazing.

feel angry, feel mad, feel sad, feel like crying feel any damn way you want its you and you alone that has to deal with this disease. most people i talk to when i do bring it up dont even know what it is and certainly dont understand what it does and this can be tough which is why we crohnies have to stick together lol! if you have never put off eating all day bc of fear, never tossed and turned all night in pain, or had to deal with contant crapping and fistulas you cant understand so dont feel bad about feeling lonely and having the occasional pity part. but as others have said dont stay stuck in the gutter too long!

I have my moments, but I'm dealing. I'll be fine one day, then start randomly crying in the shower mid-shampoo because I just remembered another thing I had to give up or another fear for the future lol. I did the whole it's not fair woe is me thing, now I'm just trying to deal. I'm hoping when I see the specialist on the 31st I'll feel a little BETTER not worse or more scared lol

Hi Marina, and welcome. I have had UC for around 20 years and still get angry, scared, and frustrated when I'm flaring. It's normal and expected for you to be emotional - crying, angry, frustrated, scared, etc... at times with IBD. Everyone still reassures me that things are okay, but when you have (in my case) blood in the toilet every time you go to the bathroom (at the moment), that's NOT okay or reassuring at all! I think the most important thing is to let yourself feel however your feeling and not to be hard on yourself.

yea i know right ill be plugging along some days then wham im crying driving down the road wishing i could be "normal" tired of having to make decisions like should i eat today to have energy to workout but risk throwing up during or not eat then have no energy to complete a workout. hoping remicade brings some relief

Exactly! To fear something you have no choice but to do everyday (eat) is horribly frustrating. I haven't discovered all my safe and unsafe foods yet so everything is still trial and error for me. I am literally terrified before eating most times.. ESPECIALLY if I'm in public. UGH. My dad and I have our daddy/daughter times at least once a month where we will go the movies and out to dinner and catch up on whats going on in each others lives. The last time I could barely make it through the movie, had to go home before dinner, and my dad felt just awful seeing me sick.

Once I get a handle on this, once the specialist has figured me out and puts me on some meds, I'm hoping to gain back some normalcy because right now, if I can even make it to the store to grocery shop it's a huge success