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Crohn's Disease Forum » Support Forum » Suddenly Hit Me


06-27-2010, 09:00 AM   #1
pompeybird
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Suddenly Hit Me

As silly as that sounds ..........
Its suddenly hit me that i have this for the rest of my life and life isnt ever going to be the same

I was so busy looking forward to getting a formal diagnoses i didnt actually stop to think what i would do or how i would feel once i got it and im suddenly scared

Theres SO much info to read and take in and im feeling rather out of my depth and that i just want to bury my head in the sand

I know i should think my self lucky i dont get D but im just fed up with feeling so damn tired and ill all the time and have just realised i best get used to it cos this thing isnt gonna go away

Sorry to sound so depressing but its just hit me like a 50 tonne truck and its not like its something i can ignore and hope it goes away

I should be happy i have finally been diagnosed and i am in a way but its bloody scary all of a sudden
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Would love people to not just see me as a walking illness / disease , im more than that


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06-27-2010, 09:18 AM   #2
donna martinez
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I was diagnosed almost a month ago and still have not totally come to terms with it. But everyday I've noticed it does get a little easier, emotionally. Stay positive and know there are great people on here that can help you along the way!
06-27-2010, 09:54 AM   #3
Astra
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Yes this is very true!
but in time you will adjust, it suddenly becomes part of your everyday life, it is you, it's part of you, it's who you are!
I really can't remember wot it was like before Crohns now!
but what I do know, it's no longer my Nemesis, it's not my pal, but I'm well accustomed to it and have been manageing it for years, and so will you!
Patience Young Jedi! (sorry couldn't resist that, I love Yoda!) lol
xxx
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Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery




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06-27-2010, 10:05 AM   #4
Crohn's 35
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I know all about how you feel. When I first dx'd and even after my first surgery, I was on Entocort and it kept me in remission. It really didn't really sink in until my second surgery that was scheduled... 10 years later! I was in denial cause I thought I could beat it, and there was NO information like a crohns forum. It isnt lucky to have Crohns but lucky you are in the tech age for quicker info than I had. So much for the word "positive" thinking. If I had a buck everytime I heard that word in the last 18 to 30 years, I would be rich or Crohns would be cured by now. .

Being aware you have it is knowledge of it. Just try not to live it, and God knows that is hard!


Last edited by Crohn's 35; 06-27-2010 at 11:23 AM.
06-27-2010, 10:38 AM   #5
Entchen
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Yes. And I keep thinking -- well, now that I have a diagnosis and we're doing something about it, Of Course things are getting better. Except now my iron levels are still dropping, not getting better with intervention at all, and who knows what else is going on. It IS scary. I've made a list of things to study up on now and things to put on hold for later because it's too much to think about all at once. One step at a time, I guess.
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Claim to fame: "loopy and floppy" colon

Last edited by Entchen; 06-27-2010 at 10:40 AM.
06-27-2010, 11:18 AM   #6
pompeybird
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Thanks all
I will be fine im sure its just so much to take in at once i just suddenly feel like a walking disease
Gah i dunno , was just hoping and expecting to feel better about things but it seems its the opposite
06-27-2010, 11:25 AM   #7
Crohn's 35
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Just remember this...with time all wounds heal.. takes longer than others.
06-27-2010, 11:57 AM   #8
Jeff D.
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When I was diagnosed 7 years ago, it feels so much longer, it took probably 2 years to actually come to terms that things would be different. I'm finally now completely okay with that difference.
06-27-2010, 03:23 PM   #9
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Crohn's never goes away, but you WILL have periods where it's way in the background and you almost forget you have it. I was almost 20 years in remission!! But now it's come back with a vengence and I can't get my head around it at all.
I've just had my second bowel resection and am playing around with meds trying to find what works for me.
I too am getting really fed up with feeling so tired all the time, and just generally unwell. I'm not in extreme pain at the moment, nor do I have bad diarrhoea or vomiting, but I just don't feel good.
I just hope that I'll eventually go into remission again and feel like my old self!!
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Surgeries: small bowel resection 1990, 2010
06-27-2010, 03:39 PM   #10
pompeybird
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Thank you all
I feel bad as some of you have it so much more worse and i really feel for you all

I think i will be ok (i dont really have a choice lol) once my head clears a bit as at the moment i feel like im in the middle of a whirlwind of info

I have to say though this place is fantastic !!!!! so much so i have just given my mum a link as she has been there with me through all appts and the one person i talk to (partner has to stay home to look after the kids) she has been doing a lot of reading up as well and just said its hard as a lot of whats out there contradicts itself so i mentioned this place and said you guys know more than what the specialist do with regards to the personal side because you are all going through it xxxxx
06-27-2010, 03:43 PM   #11
ameslouise
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Yep, I hear ya. DX a year ago for me and I am still grappling with it. It's especially hard when things are bad to wonder if life will ever be normal again.

Ditto what Joan said -It's what we have, not what we are!!

Hang in there - Amy
06-27-2010, 03:48 PM   #12
pompeybird
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I really like that saying "its what we have not what we are" that is so so true !!!!! i have noticed with the AS etc people just see that and not who i am if that makes sense xxxxx
06-28-2010, 10:13 AM   #13
Regular Joe
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Hi pompeybird,

You are absolutely right, the diagnosis doesn't make Crohn's go away. There are many people that really want and need the diagnosis. When I got the diagnosis, I already knew I had the disease and it was no surprise...I'm surprised they found it so quickly, but I knew it would come to light. But it didn't mean very much, because, like you, it was the symptoms that were making it rough.

I can't speak for everyone, but it sounds like you're talking about fatigue. Now, after getting a diagnosis, you should be able to start treatment regimens that will bring results. For me, the fatigue subsided after a few weeks into treatment with Endocort. Prior to that, I wasn't getting treated for Crohn's disease. It was just my symptoms that were being treated. So I'm hopeful you will get some relief with a workable treatment plan.

Life will become "normal" again for you. In fact it is "normal" right now...sometimes it takes a little while for our attitudes to "catch up" with reality.

Keep fretting on the downside, and don't lose sight of hope. Many of us are miracles on two legs.

Oh and one more thing...I don't have Crohn's Disease for the rest of my life, I only have it until sundown. If you can get through today, then you have managed Crohn's Disease through all the lifetime you have available.
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06-28-2010, 10:56 AM   #14
Mike
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It's setting in with me now. The idea of i"t will just go away" or "heal on its' own" like every other health issue I have had is starting to fade. Whenever I think about it my new initial thought is my girlfriends six year old sister who is finally in remission after having cancer for three years. So I just try to live by what my signature says.
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06-28-2010, 04:58 PM   #15
pompeybird
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Thank you so so much all
I think im feeling a little better (for now at least) i think maybe in the back of my head i was hoping now i was diagnosed i would get some miracle cure (although that obv wont ever happen)

I spoke to my dad last night and told him he didnt seem that interested if im honest but part of me is thinking maybe he wished it was all in my head (he thought i was anorexic as well) and that it wasnt something that is quite so serious (dad dosnt deal with ill people very well)

For now im feeling ok about it all but we shall see what tomorrow brings
06-28-2010, 07:08 PM   #16
f4ujmb
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Ive come to terms with it . it could have been a lot worse and i understand life is going to keep changing for me.
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06-30-2010, 07:18 AM   #17
Pincushion
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I can totally relate!

I was 20 when I was diagnosed (ripe old age of 31 now lol)

and I felt like a walking disease, I felt doomed and I would say things like I didn't want to get old as I felt things would just get worse and I didn't want to wind up as an incontinent old lady...

but as everyone else has said that feeling does go and you learn to live with it rather than letting it rule your every waking thought.

I hope you are having a better day today.

Keep on keeping on and take very gentle care of yourself.

Christina x
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Crohn's Disease Diagnosed Jan 2000

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09-05-2010, 05:16 PM   #18
Silvermoon
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bump - to remind some of us that we CAN accept and deal with this....
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09-05-2010, 11:01 PM   #19
kello82
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and life isnt ever going to be the same
i know it sounds weird....but i think in time you will LOVE that the above statement is true. thats what life is about, different experiences, learning....i actually feel BAD for others sometimes who only have sameness. sure they may be healthy and pain free, but some people end up living their entire lives stagnantly (not sure if thats a word but i like it) and dont get nor create opportunities to grow. and that sucks seriously.....

"only pain reveals pleasure. only tears teach us true joy. and only hell exposes our souls. "

if you never experience the horror that life can be, then you will never notice the beauty. least i think so

and i mean this is all well and good philosophy but i still have total b*tchfits at life, wanting it to be different. i think we are all entitled to forget about the bigger picture at times and just be freakin pissed that this pile of crap that is crohns (heeee ) is ruining the entire picture. we focus in on the detail/s we hate.

and i think that is normal and actually good for us in a way.

so complain away! it totally sucks that this dumb disease is forever. it sucks that some of you have to sit there while your friends enjoy delicious pizza and you get to pick at a roll. it sucks that people have such a stigma towards a disease that deals with poo!

you all are entitled to be mad at those unfortunate truths. just sayin =]
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09-06-2010, 05:49 AM   #20
Dexky
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i know it sounds weird....but i think in time you will LOVE that the above statement is true. thats what life is about, different experiences, learning....i actually feel BAD for others sometimes who only have sameness. sure they may be healthy and pain free, but some people end up living their entire lives stagnantly (not sure if thats a word but i like it) and dont get nor create opportunities to grow. and that sucks seriously.....

"only pain reveals pleasure. only tears teach us true joy. and only hell exposes our souls. "

if you never experience the horror that life can be, then you will never notice the beauty. least i think so

and i mean this is all well and good philosophy but i still have total b*tchfits at life, wanting it to be different. i think we are all entitled to forget about the bigger picture at times and just be freakin pissed that this pile of crap that is crohns (heeee ) is ruining the entire picture. we focus in on the detail/s we hate.

and i think that is normal and actually good for us in a way.

so complain away! it totally sucks that this dumb disease is forever. it sucks that some of you have to sit there while your friends enjoy delicious pizza and you get to pick at a roll. it sucks that people have such a stigma towards a disease that deals with poo!

you all are entitled to be mad at those unfortunate truths. just sayin =]
Kelly, you should write a book!!! Just save all your thoughts in a journal and with no editing whatsoever send it off to a publisher. Title it "Random Thoughts on My Life With Crohns" or something!! You have such a tried and tested philosophy. If I bought into such things, I'd say you have a very old soul!!
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09-06-2010, 09:19 AM   #21
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Ditto what he said. ^^^ You have quite a way with words, Kello.
09-06-2010, 09:52 AM   #22
bobby.parker
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It's weird, I've had about a minute where I've thought...this is my life, and this will control me. I've never got upset about it, I've accepted it. I got diagnosed when I was 12, I also nearly died from taking aza (pancreatitis) my GP said it was indigestion but my mum didn't believe him, and took my to A & E which saved my life.

I will not let Crohn's control me, I will beat it.
09-06-2010, 10:13 AM   #23
beth
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Title it "Random Thoughts on My Life With Crohns" or something!!
Crohn's: The Tao of Kello.
09-06-2010, 11:07 AM   #24
vonfunk
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It's taken a couple of years, but I'm starting to come to grips with it. And I've been fairly depressed on and off for the past couple of years. It wasn't until the last round of hospitalization when things kind of snapped. I think the realisation that I will lose my colon in the next couple of years kind of helped, as weird as it may sound.
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09-12-2010, 05:21 PM   #25
kello82
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aw thanks everybody =] LOL at Beth....Tao of kello haha i love it!

dex ive thought about writing for a long time now, longer than ive been on this forum. always worried about how to arrange things though....but now after being on this forum and realizing how much i have already written without planning too....i totally agree with what your saying, if i ever try to make something into a book it wil be a totally random collection that is unedited. ive been thinking of maybe seeing how my surgery thread reads as a book.....though just my posts.might be some gaps but i kind of like the rawness of it.
dunno.

sorry to hijack this thread....really was just trying to say thanks you guys for the kind words and encouragement!
09-12-2010, 06:00 PM   #26
seaofdreams
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I was diagnosed over a year ago and I still haven't come to terms with it. It probably doesn't help that I've just had another bad flare, am switching medications and am on Pred which is messing with my mind.
I keep forgetting that just a few months ago, my life seemed perfect and I was having almost no problems at all but this time last year, my life seemed like it was over. I'm trying really hard to keep in mind that things will always get better, even if right now there seems like no light at the end of the tunnel. We just need to focus on what is really important in our lives and know that we can overcome this obstacle and be better people for it.
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10-01-2010, 02:34 PM   #27
whoami24601
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This disease has its downside, but this is a true blessing in disguise. A life without hardship is a life where you are not truly tested as a person. You are going to learn things about yourself that will amaze you
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