I thought my life sucked how it was, now because of this I have no life

[kate.flx]

I just deleted like 5 paragraphs of things I wrote. Luckily I saved myself the embarrassment of most of that, but I really feel like I'm dieing and I don't want this at all. I don't know what to do with anything anymore there;s such a long list of bad stuff that has happened. My doctor tells me this is the worst Crohns and I already have complications early on, what do you think that's going to mean for my future? 2 weeks ago we thought surgery was way down the road, and now I go under in 3 days and I have no idea what will come of it. But now I will have to continue to have lots of surgeries because I already have the scar tissue and all that. Probably will end up with the pouch in a few years, if not even sooner!!!! :' (

I've decided to drop out of school even though I'm already home schooled I just don't care, I am not going to continue struggling with school, then try and make it all up and deal with this so fuck it, because of this it's not like I'll be able to have a career anyways.
I'm all alone with this and it's making me crazy. Family being here doesn't substitute anything, they don't understand, they make me feel worse.

I thought this diagnosis wasn't that big of a deal at first, and I'm still shocked at everything my doctor has told me. It just happened too fast and it's too much. I'm hesitant to post this but I will anyways and well whatever I guess. I feel like I'm complaining an I hate it. I don;t talk to anyone about what goes on in my life.

I'm not sure this can even be responded to

 

[jboi85]

Hi Kate, I know it's a shock, a terrible life changing one at that, over 10 years down the line I'm still having trouble accepting it, maybe counselling may be a good idea? But you are NOT ALONE with this anymore, there are many kind people on here that will be able to answer any questions for you to help put your mind at ease a little. Any questions, fire away. Any moans, rant away, we're all here for you. I had surgery (right hemicolectomy) in 2001 and was pain/symptom free for years after, so it isn't a terrible thing. I'm not going to lie, it's not easy, and very very painful, but worth every minute for me. But please don't give up on life because of this, or it will get the better of you. Just think, if the surgery is successful, and they manage to control your Crohn's, then you will be able to live a full life, and hold down a decent career, family etc. You sound as though you will go far if you can get over this, and with the support of those around you, all us fellow 'Crohnies', and the treatment from your doctors etc you should. Anyway keep us up to date with how it goes, and I hope you can have some relief soon. Speak soon yeah, and take it easy

 

[Kelsea]

Completely agree with everything from above post.

Also, POSITIVE THINKING. I am a strong believer of that. If you say you wont be able to have a career, you wont. However if theres a career path maybe you always wanted to go down before you were diagnosed, don't rule it out! Maybe you won't be able to do all the things you wanted to do, but u might be!!! and unless you try you will never know!

I wish yo all the best in your operation, please try to think positively, i know its hard but give it a go! and yes, us "crohnies" are always here, even though all our experiences are different, if u want a chat!

Kels x

 

[vonfunk]

It gets better, it won't always feel like this. I've been told the first major flare is always the worst.
With mine I spent a month out of commission before I went to the hospital and 2 months after that. I stopped eating, lost 60 pounds in about a month and a half, almost died. It's a brutal condition.
Once they Sorted out what was wrong, it got so much better. Plus you adapt. Yes it's a drag.

On a plus side almost everyone I know stopped complaining to me when they are sick. Apparently I win all of the being sick contests.

 

[PeninsulaLil]

I'm so glad you posted. This board is a life saver-- no one cares how much you whine and complain; we all do it when things get rough-- and Crohn's is an up and down disease.

I so relate to your feelings of shock. I went from having diarrhea to you've got Crohn's in a matter of hours. Went to my first ever GI appt at 8:30am and at 5pm had an unmedicated sygmoidoscopy and diagnosis. I was totally unprepared; never even heard of Crohn's. I went home and cried because I was going to die and would never see my grandchildren (projecting a bit into the future as my daughter was only 17 at the time!)

Nine months later former couch potato me walked a half marathon fundraiser for Crohn's Colitis Foundation, raised $5,000 and made a bunch new friends. In a million years I never would have thought I could do even a 5k and wouldn't have considered trying. To top it off I was having an episode of pain and vomiting for two days before the race. Along with my water bottle and protein chewies, I carried anti-nausea pills and extra under pants! So just goes to show good things can actually come from something as yucky as Crohn's.

So hang in there! It does get better and life goes on. Don't give up your dreams and doing things in the now that give you pleasure and support.

Good luck with your surgery!

Lilly

 

[reba]

How are you today?
:hug:

 

[woops!]

I understand how you feel. Just always remember that when you feel like ranting about it, this is the best place. No one judges you here and everyone has a pretty good idea of what your feeling, and can understand. I love my family, but they don't understand either. I was frustrated for a long time before I got on here and discovered that other ppl were having the same issues. So when I have problems I turn here. Don't throw your career away just yet. It takes time for your body to heal, time adjust, time think things through. Work on what you can do today, and don't worry about tomorrow untill you get there. If you start looking at the big picture it gets overwhelming. Just work on today, then the next, then the next.... you will get there. It just takes time. I try to laugh at myself alot, coz if i dont the other option is to cry, and im not going to give in. Just keep you chin up, and keep going. Good Luck

 

[woops!]

ohhhh.... and if you feel like writing 5 paragraphs/pages
Just do it.... we all have at some point on here....

 

[kate.flx]

Thanks guys : )

But I have bad news. Yeah...well one good thing is after only 2 days in hospital my levels went from horrible to good. I am still having surgery, but I have to wait TWO WEEKS! my doctor said I'll be in here a good month. I cannot eat anything for these two weeks. At all. Even liquid diet I can barely have anything. The surgery can't be laparascopic, I guess they need to fully open me up and no way around that. Missed thanksgiving now am missing my cousin (whos like my sister) birthday and both my baby cousins birthday parties christmas I might not be able to do anything either.

Shit happens? Lol...Guess so.

 

[Manimation]

That's rough not eating for two weeks. Crohns is a real bitch and my first years with it, between the ages of 10 and 15, were definitely the toughest. I never had surgery, but i was on tube feedings nightly, threw up daily, and had intense pain after every meal. The treatments feel primitive even just 15 years ago. Try and look at this surgery as a chance to fix what's wrong. You have some defective parts that need removing, so your quality of life should increase when it's done. Find some good books to read and hunker down! May also be worth asking if you can have a sleep aid to get you through these next two weeks like triazolam or something. That stuff knocks me out regardless of my physical or mental state.

Also feel free to post as much bellyaching on this board as you please, that's what this place is for and not one member will come on here and reprimand you for doing so.

 

[ameslouise]

Hi Kate - I'm sorry to hear you have to wait so long until the surgery, but I assume it's to wait until you are stable and able to handle the surgery.

I know this seems like the end of the world to a young girl who has her whole life ahead of her. I'm 42 and I still struggle with the diagnosis. Keep poking around these boards and you'll see how many people were DX at a young age and have very full lives. And YES! You absolutely can have a career! Read Kitchen Table Wisdom by Naomi Remen. She's a doctor who has crohn's and the book is full of amazing stories.

Hang in there and good luck with the surgery! Keep us posted!

- Amy

 

[wolfem]

I agree; this disease does stink. I'm struggling with school myself and I've just recovered from surgery which I had back in January. I still can't believe I have crohn's disease. I clearly remember stating to myself when the doctors couldn't find out what was wrong, "Uh oh, I think I might have crohn's disease." I had done tons of research and ended up diagnosing myself. Anyhow, at one point I had just about given up until I realized that there are lots of things you can do to lessen the effects of the disease. It just takes time. For me, I think it will probably be another year before I fully recover or at least come close to being fully recovered. Remember stress only makes things worse and its best not to think about what could happen- think about what you want to happen and hope for the best. :hug:

-Mary

 

[Nica]

Hi Kate,

Yes this disease sucks. It changes the "normal" in your life. Please feel free to post anytime you are feeling down and need to get it out. We all need a place to let it go.

Are you on Prednisone right now? Sometimes Prednisone can make you feel mentally not right. Are you on an anti-depressant? Dealing with the emotional effects of an illness is quite draining, many crohnies need to be on an anti-depressant. I am one of them.

Once you get through surgery things will start to look up. Most people have a period of remission after surgery. Yes you will still have to manage the disease, but you will not be only focused on your illness. It took me quite awhile but, you learn to do what you can, when you can and be happy in the good times.

I hope things are looking up for you.

 

[Lydia]

I could have wrote the same stuff when I was your age. Well I was a couple years older but still. I cant say what you will or wont do with your life, but in my life as a crohnie I have gone on to do many things I didnt think I would do. I have had a couple major surgeries as well. I had a colostomy bag for 6 months when I was 23. My bowel abscessed and perforated causing me to go septic 2 months before I was supposed to graduate college and I had to go back and do that semester the following year. BUT I did finish, and I went on the have a 5 year career in Chemistry before settling down and getting married. I also did some travelling and hiking and snowboarding. I had a 4 year remission shortly after my last surgery. I had a really bad long flare last year, and I am in remission again. There is hope. Its just a lot to get used to right now. If you need to feel sorry for yourself then do it. I think thats is part of the process, but dont lets yourself get stuck in that mode for too long OK or you may never come out of it.

 

[Lydia]

Oh and after my last remission when I started flaring I had to go through all the acceptance all over again. What are the 7 stages of grief...anger, denial, barganing, depression.... something....and lastly acceptance. I went through it as if someone had died.