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10-17-2008, 04:13 PM   #1
MINI Cooper
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MINI Cooper's Blog

Hi everyone.
It's great that there is a forum for people coping with Crohn's.
One of the worst feelings is that you're alone in all of the suffering.

I have just been given a preliminary diagnosis of Crohn's Disease.
However, my doctors are still looking into the possibility that I have an
adhesion due to my last surgery. I guess that is where I should start my story...

I have always had stomach problems. Cramping with diarrhea at least once
a week. But I dealt with it. But when I turned 25 all hell broke loose.
I felt the worst pain of my life. It literally felt like something had burst inside
of me. I couldn't have been more right...

5 trips to the ER later- one wrong diagnosis after another, the doctors finally
discovered a plum sized object at the end of my intestines. But instead of doing
immediate surgery to remove it, they wanted to put me on steroids for a week to
"see what happens". Luckily, I had my father there and he basically demanded
they do surgery instead.

So, I had surgery. My appendix had ruptured, and developed a huge abcess around
itself which was causing me pain, but at least keeping me alive. The doctors removed
all of this. End of story? I wish...

By this time I had dropped to 80 pounds, and was released from the hospital
weeks later hardly able to walk. But on antibiotics, I started to feel gradually better.

Sadly, a month later I started to get worse again. Ridiculous amounts of pain, and
the inability to eat because I would vomit anything and everything up i tried to
force down myself. I was basically painfully starving to death.

I dropped to 74 pounds. Finally, (after dealing with my hospital's member services
because of lack of help from the doctors) I was rushed to the hospital. My mom had
to wheel me in a wheelchair because I was unable to walk I was so frail.

The hospital put me on TPN (total parental nutrition) where I had to feed myself
through a tube in my arm for 4 months- I got my weight back to 100 pounds.
(I normally am 110-115lbs.)

They also put me back on antibiotics which made things manageable again.
I was able to eat while on antibiotics, which was what was going to keep me alive.

I also had a colonoscopy, but they told me it looked fine. (but really wasn't)
LONG story short, my hospital couldn't figure out what my problem was.
Was it an adhesion from scar tissue after the surgery? They didn't know.
They left me on antibiotics and basically gave up on me. After an entire YEAR,
they were unable to give me any kind of diagnosis.

That's when I demanded I be transfered to Stanford to get a 'second opinion'.

After speaking to the doctor there, he believes I have Crohn's.
Apparently, there were results in my colonoscopy what were overlooked,
(colonic mucosa in my intestines, and a dilated intestine) and CT scans that
were done poorly by my crappy original hospital. (who I will refrain from naming).

SO- now I am scheduled for another CT scan at Stanford, which should tell
if it is an adhesion in me that can be surgically removed or not.
Then I am having yet another colonoscopy, because my last one was
done poorly.

I am clinging to my shred of hope that it isn't Crohn's, but it isn't looking good.
I am currently living only because of 3 different kinds of antibiotics that I rotate
between.

Thanks for reading. It'c nice to have somewhere to vent!

-Cassie

Last edited by MINI Cooper; 11-20-2008 at 08:34 PM.
10-17-2008, 06:39 PM   #2
MaskdMarvl
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Good luck, Best wishes! I hope life offers you the splender you deserve someday.
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What a pain in the ass !

10-17-2008, 09:22 PM   #3
jed
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have you been hearing "just remember theres always some one worse off than you" alot?

or "this wont hurt a bit", or "at least its not cancer"

i got so bored of hearing things like that when i was going thru the diagnosis stage!

hullo cassie, and welcome to the forums.

apart from been able to take your blood or give you a colonoscopy, i think you'll find some of the people here to be the greatest source of knowledge on coping with Crohns (if you come back positive). i wont be much help to you medically, but hopefully i'll put a smile on your face from time to time.

best wishes,
Jed
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Current meds - Methotrexate, the rest werent doing anything.
Current state - hopeing poop softener, honey and cinnamon tea make me poop like a crohnie again..

my story - http://www.crohnsforum.com/showthread.php?t=3093
10-18-2008, 08:20 AM   #4
art_nj
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Hi Cassie and welcome! You've found a wonderful place for information and understanding.

I was just diagnosed this past week with Crohns (last Monday afternoon to be exact). While being diagnosed with Crohns was upsetting, not knowing WHY I've been getting worse for the last 6 years was a nightmare! I hid my pain and discomfort for years because I didn't want my family to think that I was exaggerting or unable to tolerate pain. I am relieved however to FINALLY have an answer that makes sense! I was told 6 years ago that I had IBS, but in my heart of hearts I knew I had something more than IBS. I've been having abdominal pain and other issues for 18 long years. I didn't start really going for tests until this past summer (sigmoidoscopy, blood work, colonoscopy, ct scan, small bowel series next week). So yes, the constant testing sucks but if you can try to look at these test as a possibility of putting yourself into remission, it may make the testing a bit easier to tolerate.

Good luck with your test and try to hang in there. Hopefully things will start to look up for you.
10-22-2008, 10:24 PM   #5
MINI Cooper
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Thanks for the replies.
The test results came back today. My Stanford doctor has officially diagnosed
me for Crohn's.


Actually, I'm a mixed bag of feelings right now...

Good news is that I finally have a NAME for my problem. Now I can start
treatments and hopefully get this pain and suffering in control before yet
another one of my organs bursts...

I'm looking forward to reading through this site, learn more about Crohn's
and get to know some people who understand what I'm going through.

cheers for now,
-CP
10-23-2008, 04:07 AM   #6
jed
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time for a silky 3 ply salute to you! official welcome to you!

and pen is right, really nothing sacred here.

and if your unsure about posting questions publically, there are many people here who will be more than happy to help you out via PM's.

sorry for your diagnosis, but there are worse things in the world.

jed.
10-23-2008, 04:59 AM   #7
soupdragon69
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Hi Cassie,

Welcome to the happy throng! I have to say 50% of the battle is knowing what the heck is wrong. At least then you can start to fight back with the appropriate treatment and work to get your quality of life back finally.

Those were my first thoughts when diagnosed. Almost 2yrs down the line I am at last getting my head round my health problems (have others) and when I spoke to my GP yesterday he agreed that I have stopped beating myself up finally continually thinking I must do more or not doing enough. I ACCEPT now that I have good days and not great days, rest when I need to even when not happy about it because allows me to have a decent life in comparison to what I had before. Huge difference..

Know it will take you some time - maybe many months like me to get your head round things and work out what works for you. Know we are here to listen during your good and bad days. We will support and help in any way we can whether its to make you laugh or to prop you up Cassie.

Welcome again. Glad you found out the cause at last. Keeping asking both here and of your medical team now you have found someone that listens to you!

Thinking of you ((hugs))
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IF YOU DON'T JUMP YOU WONT EVER LEARN TO FLY





Brittle asthma 1996, Hypothyroidism 1998, Severe Crohns ileitis 2006 , Severe IBS 2007, Inflammatory/Rheumatoid Arthritis 2008, Sebhorreic Eczema and Folliculitis 1992, Roseca, steroid induced acne and Hidradenitis Suppurativa 2008, Multiple allergies and food intolerances diagnosed from 2003. Newly diagnosed fibromyalgia Dec 2009. Newly diagnosed calcific tendonitis Jan 2010. Chronic Pain diagnosed Dec 2010.
10-25-2008, 11:38 PM   #8
fenway1971
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Hi Cassie,
Welcome. Cheer up - you've got a great support group here. Found this forum 2 months ago and it's been helpful for me. Great place to vent and pick up advice on meds, diets, how to cope, etc.

Biggest thing you'll learn is that each person's experience with the disease differs. Everyone also seems to be on different diets, different med treatments, etc. But, if you sift through posts carefully, you'll find some great advice that will help you.

Stay positive - worrying will only make you feel worse.
10-26-2008, 09:39 AM   #9
teeny5
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My Support Groups:
Hi Cassie. Welcome to the forum. It might not be what you wanted to hear that you have Crohn's, but know that this forum is a great place to get the support that you need. It is nice to know that we are not all alone.

I hope that they get you on a treatment that works for you quickly. It has taken me since February to finally feel better. It will happen, just might take some time. For me it was a matter of finding the right mix of medications. Good luck!
10-26-2008, 12:00 PM   #10
MINI Cooper
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Thanks everyone.
I'm having my second colonoscopy (this time by Stanford) tomorrow.
At the butt crack of dawn. Pun intended. (6:45AM)
They've had me on clear liquids all bloody weekend. It's not fun to say the least.

Why is it when I CAN eat, my tummy doesn't feel like eating,
but when I'm NOT ALLOWED to eat, I feel like a nice juicy cheeseburger???
Life can be cruel...

And I start my laxative in 3 hours. Not looking forward.
I ALREADY feel like I'm on laxative
10-26-2008, 01:02 PM   #11
MINI Cooper
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Pen said:
Hey Cassie, yes the prep is the worst part of the colonoscopy, gross. When your bm are clear and no solids you've done your job. LOL. Let us know how it goes ok?
Definitely. LEt the fun BEGIN! woohoo!
10-26-2008, 07:31 PM   #12
dayng1016
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I'm right there with you Cassie, I'm having my second colonoscopy and upper endoscopy on Wednesday. Starting my liquid diet tomorrow, but dreading the prep that they give to drink (can't remember the name of it) b/c it taste like pure salt water. I'm hoping to find out if the crohn's has moved up, or if something else is going on in the upper stomach area or colon. Good luck and let us know how it goes.
10-26-2008, 07:33 PM   #13
jed
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Pen said:
When your bm are clear and no solids you've done your job. LOL. Let us know how it goes ok?

ha ha ha ha ha ha, I LOVE THIS WEBSITE!!!!!!!!!!!!!!!!!

lol, tell us more


oh dear.

good luck cassie!
10-26-2008, 07:40 PM   #14
jed
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flirting? we asking about her poop? lol, nice pick up line in a bar..

hey do you come here often? tell me about your poop?

oh yeah, that sounds great, tell me more..


eeep!

i am so not a morning person today pen actually kinda grumpy i miss you in the game.

{{end of hijack, back to cassie now}}
10-26-2008, 07:52 PM   #15
Nancy Lee
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Hello Cassie and welcome to the Forum!

I feel badly that your test came back positive for Crohn's,
but, it does feel good to be able to put a name to this nasty 'thing'!

Hope all goes well tomorrow, let us know the results.
You're probably well under way with the 'cleansing' now.


While in the forum..
please relax, read, ask questions, and yes, even have fun here.

Once again welcome!
Healing hugs~Nancy
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10-26-2008, 11:41 PM   #16
sickranchero
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Hey Cassie, welcome to the forum. Looks like you have been through a lot, actually everyone on here probably has. So you're from the bay area, me too! I work down the street from Stanford. Good luck tomorrow, gotta love colonoscopies. Been there done that!
10-27-2008, 02:15 PM   #17
Methofelis
 
Gah! Your story sounds too much like mine (except mine took 20 years. Yikes.)

Good luck, lady! Just remember : Yes, it has a name. No, there isn't a cure... but at least now you know there are things you can do about it. And you have us!

... As insane as we all are, mind.
10-27-2008, 11:28 PM   #18
MINI Cooper
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sickranchero said:
I work down the street from Stanford. Good luck tomorrow, gotta love colonoscopies. Been there done that!
Hello fellow bay area person!

Now on to the colonoscopy:

Well, my first colonoscopy I was completely out. This time I was half awake
the whole time. I felt stuff going on in there and heard them talking!

They couldn't make it as far into the small intestines as they wanted, due to
my obstruction, but they did get some tissue samples.

The doc is starting me on lovely predisone on wednesday. He's hoping I will
feel better after 5 days and then switch me to a milder drug.
I'll hope for the best...

In the meantime I will be starting my new diet. I'll be giving away all the food
in my pantry and buying all new stuff so there won't be any temptation around

...stupid crohn's
10-28-2008, 01:23 AM   #19
soupdragon69
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Glad the colonoscopy went well for you Cassie and you got some results and a plan forward even if it is the dreaded pred!

Hang in there honey. Things will improve albeit slowly.

Thinking of you.
10-29-2008, 12:10 AM   #20
MINI Cooper
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I went to a Crohn's support group meeting for the first time today.
Good God was it depressing! About 12 people there, half which have had
their colons removed. Not very comforting. The more I learn about
this disease, the more I hate it.
10-29-2008, 12:12 AM   #21
jed
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how many toilets were there?

10-29-2008, 11:50 AM   #22
danman
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"how many toilets were there?"


That's good, thats very good....
10-29-2008, 03:39 PM   #23
My Butt Hurts
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Hey MINI cooper, welcome to our club of talking about poop! You started pred today? I LOVE it! I hope it's good to you.
Feel better.
10-30-2008, 12:44 AM   #24
MINI Cooper
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jed said:
how many toilets were there?

That was my first thought. We all loaded up on imodium before we came, I guess


Still waiting for my 'OK' to start the prednisone from the Doc.
I picked up the prescription today though. Can't wait to hurry up and get
this started and feeling better!
10-30-2008, 03:11 AM   #25
jed
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loading up on immodium! ha, know that feeling!
10-31-2008, 12:03 AM   #26
MINI Cooper
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Officially started the prednisone today- 40mg

Had a nasty flare up last night. Vomitted my guts out

So now Im actually feeling a lot better compared to this morning after
taking the meds. My doctor told me to email him on saturday to tell him
if I'm feeling better.

I also have some Ambien to help me sleep, but so far I don't think I
will need it tonight.

...and so it begins. I hope to be in remission sooner than later. This flare up
has lasted a year and a half now. It's just so cruel.
10-31-2008, 09:51 AM   #27
Han Shan
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I hope the prednisone works for you as well as it worked for me. When I started at the same 40mg dose, it was literally like a switch got thrown. I was pain free after three days of being on it. I had been on Entocort, Pentasa, and 6-mp for a month prior to that with no improvement, so I tend to hold prednisone in high regard. I had some insomnia during the first two weeks on it, but I think that was also a result of being so damn happy to feel good again.
10-31-2008, 02:27 PM   #28
MINI Cooper
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wow. this stuff works fast!

Just yesterday I was bedridden, with horrible cramps and vomiting my
guts out.

Today, my appetite is back, very little cramping, and I actually feel
like moving around instead of lying in bed.

So far, so good!
11-01-2008, 04:13 PM   #29
fenway1971
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Glad prednisone is working out. Did doc say how long he's going to have you on it?

I started at 40mg in beginning of Sept for 2 weeks, then 30mg for 2 weeks, then 25 for 2 weeks. Now at 20. Last week got my moonface. Frankly, I can't wait to get off the stuff. Works fast but side effects can get to you.
11-02-2008, 05:47 PM   #30
MINI Cooper
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Guess I'm having some issues. Started to get bad cramping again.
Doctor had me call him at home. Just got off the phone.

He thinks its my obstructions acting up so he's calling me
tomorrow morning. I may have to go into the hospital to get the prenisone
put in interveniously. Till then I'm supposed to be on a very low residue,
even clear liquid diet to avoid irritating my obstructions.

So much for my new diet. It will have to wait until I get this stupid inflammation
down and blockages taken care of. I have to take baby steps and I forget that.
I just want to wake up and be well tomorrow.
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