Crohn's Disease Forum » Your Story » My freaking story, for anyone who gives a crap (so ALL of you, I guess...).

04-28-2006, 04:55 PM   #1
Jason M V
My freaking story, for anyone who gives a crap (so ALL of you, I guess...).

Okay, hereís my freaking story. In the early spring of 1996, I was virtually invincible, it seemed. I had a full head of thick, dark-brown hair, perfect skin, and I was about 190 pounds. Then I started getting severe heartburn (and I mean severe), but thought it was just stress. Then one day I tried to walk up the hill to campus and had to run back to my apartment. I went to my doctor and he ran some stool tests which came up negative; so he sent me to my gastro doc, and thatís when the fun began. I wonít describe all the tests, because you probably know them well enough, but I will say that two months later I finally had a diagnosis but weighed 148 pounds (instead of 190) and was going to the bathroom more than twenty times a day. The diagnosis took so long because I had tested positive (though weakly) for a certain bacteria, and they had to rule that out first by having me take Flagyl for a while.

Anyway, after the diagnosis, my doc put me on Prednisone. I had three ulcers in my stomach and hundreds of ulcerations throughout my small and large intestines. My liver was congested; my spleen was enlarged; and my esophagus was so inflamed that it hurt to swallow and every now and then I threw up blood. I thought the Prednisone would fix everything, and that I might even get some muscles back because of it, but about a month after I started using it I had a severe skin reaction to it that became badly infected and could not be stopped. I was put on Accutane by a dermatologist, and this finally got everything under control, but not quick enough to keep my face from being scarred. So now I was not only a freak on the inside, but also a freak on the outside. After this, I took a year off from college, then I came back, and in my last year I found that my hemoglobin was 8.9, which explained why I had trouble making it up the four flights of stairs to my art classes. Thatís when iron infusions started, and later came Procrit shots, and everything got worse (my control especially) as the years passed, so that I couldnít stand very long Ėor walk very far- before having to go. I had one surgery to biopsy some swollen lymph nodes and rule out Lymphoma. The docs have wanted to remove my entire rectum, my ileum, and the last half of my descending colon for years now, because, due to thickening and narrowing, I can no longer pass stool without the aid of Miralax. But the Miralax keeps everything going so consistently that I canít go anywhere without taking a handful of Lomotil to slow things down. Oh, Iíve also been fighting a perianal fistula that got big enough to pass gas through. Yowzers!!! Anyway, thereís a lot more than that (I filled the toilet with blood for like two years; I didnít sleep for more than an hour at a time during the year 2004; I went to the Mayo clinic, tried Imuran for nine months and puked every day; I also had two bouts of acute Pancreatitis, and I've been on Remicade for the last six and a half years...) but Iím tired of writing about it all right now. If youíve got any questions, Iíll try to answer them. If not, then just try and be well, whether you are or not.

Crohnís will not always get us in the end!

That was a joke, by the way, that "in the end" part.... Ah, forget it!!!

04-28-2006, 05:06 PM   #2
hey jason welcome. sounds like uve had some pretty scary things happen. i had pancreatitus also so ikno that is no fun.but anyway stay strong and welcome!<3
04-28-2006, 05:20 PM   #3
Mama Crohnie
cookey's Avatar
Join Date: Apr 2006
Hi Jason...Welcome, your story is amazing..and you certainly tell it well. Your humor is outrageous, love it. You will fit in well around here. We all give a crap about each other, that's what it's all about. Thank you for sharing!

04-28-2006, 05:32 PM   #4

Hi Jason! You've really had a bad time of it haven't you? I hope you see an improvement soon. Don't give up! I love the Crohn's comment by the way! Too funny! I love your sense of humor. Keep it up. I hope you'll come back often and share more about yourself. We're all here for you.

Looking forward to seeing you around,

04-28-2006, 07:49 PM   #5
mikeyarmo's Avatar
Join Date: Feb 2006
Location: Toronto, Ontario
Thanks for sharing that Jason. It certainly has not been easy for you, and I just hope that things really start getting much better. We all hope to see you around here again some more in the future, so don't be afraid to post some more.
04-28-2006, 08:02 PM   #6
Tami Lynn
Forum Angel
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Join Date: Apr 2006
Location: Ocala, Florida

Glad you came by and posted Jason - thanks for sharing some of your story with us!

I'm sorry to hear that you've had to go through such hellish experiences--I'm sure it's been awful for you. It sounds like everything was going wrong for you all at once!

How are you doing now? I hope things have improved since all that took place.

Stay strong and remember to try to focus on the good things in your life... that's something that has helped me get through some pretty bad days ( get the picture)

Just like I tell my kids...sometimes life is like trying to find a flower in the weeds. Wild flowers do grow in weed patches....but we often get so overwhelmed by the weeds everywhere that we miss out on some of the small and seemingly insignifcant things that can still be found and enjoyed in the midst of it all....

Now does that sound like something a mother would say or WHAT?! Sorry...

I do hope all is well and things are stablizing for you. Feel free to vent anytime! We're here for ya!

You've found a great group of people on this board, and I look forward to getting to know you better in the future!

Post on dude...

"The only thing worse than being diagnosed with Crohn's disease 25 years ago, was when my daughter got diagnosed with this dreaded disease 4 years ago and having to stand by and watch her suffer with the same things I've dealt with for most of my life and feeling so utterly helpless to do anything about it!"
04-28-2006, 09:09 PM   #7
Hey Jason...I am new here too...sort of. Lol.

Your sense of humor is fantastic. With this dang disease, it helps immensely to be able to laugh at the problems we face daily. Otherwise, it puts you in the pity pool, and sometimes, its hard to come out of it.

I hope things are looking up for you. I can kind of understand where you are coming from. I could fill a toilet with blood for 1 1/2 years. Half of that was before I was diagnosed, AND pregnant! When they diagnosed me, my hemo was about 7, and my red blood count was the same. They wanted to give me a transfusion, and I opted to not do that. Also, they talked about removing my whole colon, but also opted not to (I found this out AFTER I got out of the hospital). So I still have all my parts, but still have accidents, pain, and can go as many as 23 times a day, 5 out of 7 days a week. And, I am on Remicade, tho I don't know why anymore.

I guess just try to go day by day, and laugh a lil. Hang in there and come on in anytime you need some understanding people who do indeed care. Why else would we be here????

04-28-2006, 09:46 PM   #8
Hi Jason, welcome aboard.
I can't even imagine what it must have been like to go through all of are obviously a very strong person. I agree with Donna, your sense of humour is fantastic! I think a lot of us here rely on humour to get us through the downs that this disease inflicts on us.

Nice to meet you and looking forward to getting to know you better!
04-28-2006, 10:27 PM   #9
Jason M V
I'm drinking my Miralax as I write this. I'm wishing it was Kool-Aid. I just watched Tristan and Isolde, and wow was it a bummer. The troubles they had just from falling in love made me almost glad that I've got Crohn's instead. NOT!!! Anyway, thanks for taking the time to write stuff about me. Sleep well.

04-29-2006, 04:29 PM   #10
Hi Jason

Haveing a sence of humor always makes haveing crohns easier well you know what i mean.

All the best and welcome to the site

04-29-2006, 05:07 PM   #11
Oh I forgot to add that I GIVE A CRAP!!!!!!
04-30-2006, 12:16 AM   #12
Jason M V
Thanks alot you guys/girls, for giving a crap. You're all number two in my book.
04-30-2006, 12:29 AM   #13
Aw thanks Jason. That's the nicest thing anybody's ever said about me You simply MUST come more often and share that shart wit of yours with
05-05-2006, 07:25 PM   #14
Join Date: Apr 2006
Location: Trafalgar South, Victoria, Australia
Hi Jason,

I agree with Donna "Your sense of humor is fantastic. With this dang disease, it helps immensely to be able to laugh at the problems we face daily. Otherwise, it puts you in the pity pool, and sometimes, its hard to come out of it."

Crohns is a shitty illness and you've obviously had a really bad time. But, at least you have humour and that is a bloody great thing to have with this disease. Where else could you hang out with a group of people who all talk about farting? I mean, come on, we wouldn't do it in any other place except

You'll meet some great people here, REALLY GREAT!

The 'guys' here do all give a crap and they are real.

Anyway, I'm glad to 'meet' you and hope you continue to share with us.

Cheers from Australia

There are four food groups: White, Dark, Milk & Hot Chocolate!

Indulge in everything, because something's gonna get you sooner or later.

For my crohns I take Questran Lite and Imuran.
For my Myasthenia Gravis I take imuran, Mestinon.
05-08-2006, 10:31 AM   #15
Karen's Avatar
Join Date: Apr 2006
Location: Ohio

My Support Groups:
WELCOME ABOARD Jason ... Make yourself right home here & I am sure that the other members will tell you the same thing. You have found a wonderful site & I am sure that you will find plenty of comfort here & all of us will make you feel welcome !! I however am not the one with CD my husband is ... and so I have met a lot of wonderful folks here that have helped me out and I have shared plenty of good things with them in return so have fun & jump into the games & have fun !!
05-08-2006, 01:27 PM   #16
hey Jason,

Well, now I know something that I didn't before - not to go and see that s*** Triston and Isabel, or whatever it's called. Crock of crap mate, is it?

Hang in there buddy - you've got the special something that means this shitty disease won't get you down. Mind you - EVERYONE that suffers form this infernal condition has that something special, in my opinion.

Stay cool buddy, and post on. We're all here - maybe not all the time, cos some of us work, sleep, get drunk - ah, you know what I mean.........................

05-17-2006, 02:41 PM   #17
Hi Jason, enjoyed reading your post. Sometimes reading how bad others have had it can really put things into perspective. Wow.
05-17-2006, 03:03 PM   #18
Hi Jason,

Wow you've not had an easy ride have you, but having a good sense of humr always helps i find!!

05-24-2006, 01:50 PM   #19
Hi Jason,
05-24-2006, 05:36 PM   #20
Hi Jason all ther best dude and welcome to the site
05-25-2006, 04:46 AM   #21
Welcome. My Grandad had pancreatitus and I know how serious it can be. I hope you have better and healther times ahead.
05-26-2006, 04:05 PM   #22
Senior Member
ladyB's Avatar
Join Date: May 2006
Luved the humor. My outlook is:
If you can't make a joke about something, it isn't worth talking about!

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