Crohn's Disease Forum » Your Story » Cookeys story living with Crohns/Colitis

05-29-2006, 12:36 PM   #1
Mama Crohnie
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Join Date: Apr 2006
Cookeys story living with Crohns/Colitis

So, here we go with my life living with Crohns/Colitis. I was 17 yrs old with a great job working for Met Life Insurance. A word of warning, some very graphic details...but all reality. I came down with a very bad case of Diarrhea in 1978..didn't think another thing of it, told my parents...and a couple of days later they took me to a doctor. The doctor said that there was nothing wrong with me, I just had a bad case of Diarrhea. Hmmm, something to this day I'll never understand, because she never even took the time to do tests. "Go home and stay on a bland diet, we'll see you back here in a couple of days" she said. You have to remember now, this is back in 1978...and yes we did have xray machines back in those They never took the time to look into anything any further, because Crohn's was not even heard of. However, Colitis was.

So, about 1 week later...I got up in the middle of the night, with terrible pain..went to do my thing blood everywhere. I was hemmoraging, but I didn't realize that, I was a kid...I just knew something was not right. I screamed for my mother, she saw this and called the hospital right away. She spoke with some idiot doctor, who told my mother not to worry, to get me dressed and ready to come into the hospital by morning. My mother said to them "are you crazy"?, she is hemmoraging fresh blood?" Doctors response "OK maam, get her dressed and bring her into emergency" Is it just me, or does it sound like this doctor should have been practicing?

Anyways, While in hospital...They were doing tests, all the lovely stuff us Cronies love, (ya right!!). One night...i got up again in the hospital to go to the bathroom, same thing happened, all i remember is going and seeing all the blood...then I immediately passed out. When I came too...I was on a stretcher in ICU. They told me they had to call my parents, I had tubes name it, they were there. I had taken a turn for the worst, and I was begging them not to tell my parents anything other then to come to the hospital. Yep, I was dying...but luckily with 12 bags of blood transfusion I survived. Remember they still don't know what I have...but they sure worked quick after that incident.

Finally I turned 18, and I got the news that I was diagnosed with Crohn's/Colitis. The first year was pretty bad for me, as they were trying to stable my condition, I was put on Flagyl...a drug that never did help me in anyway. Then came along this little tiny white pill, (prednisone) that helped to control my flare-ups. Little did I know at that time that this drug was a steroid, and that I would blubber out to look like a bloody elephant. Unfortunately, it didn't help with all the fistula's I was getting on my vagina, and other areas. Very painful to say the least, but it was helping in controlling my disease. I couldn't eat much for the first couple of years, anything I ate...I would flare up. The hospital was literally my first home, because I was in and out for months at a time, living on Jello products and juices. I never want to see Jello again in my

I'll try to condense I'm not boring you all. In 1987 I weighed 62 pounds, I have a picture somewhere and would love to post for all to deathly ill I was, and compare to what I look like today, all because of the greatest decision I have ever had to make to get my life back.

In 1987 my doctor told me if I didn't make up my mind to have an Ileostomy performed that I would die, and that was a given. I was so thin I couldn't walk. I gave it serious thought of course, and had my life changing surgery done on March 12 / 1988...and have been off all meds, since then. I now weigh, 135 pds. I'm healthy, active, can eat anything...and enjoying every moment of living as a bag lady. I too say, if anyone would like to chat, or email me...I am here for you no second thoughts...night or day. I now work for CCFC here in my hometown, and attend monthly CFIC meetings...where on occasion I am a guest speaker. I do volunteer work for the hospitals also, where I go around speaking to all the teenage kids about Crohns, and try to address their fears, or any concerns they may have for living with this very painful affliction.

Way to go Mike, I tip my hat to you sweetie...I know I have told you this before, but I admire your ambition to put this site together. On that note, health and happiness to each and every one of you. Always remember, there are way more serious illnesses out there, and that you are definitly not alone.

Thank you to everyone for taking the time to read my story, and I do apologize for the length.

Note: I do have this posted in Ree's section of her story when I first joined I was still finding my way around, and happened to post this after Ree's I didn't feel it was fair to her, to have mine there. Love ya gal...come back soon.

05-30-2006, 12:54 PM   #2
thanks for sharing that Cookey, your a very inspiring lady.
05-30-2006, 12:57 PM   #3
Tami Lynn
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Join Date: Apr 2006
Location: Ocala, Florida
I didn't know all of that - Thanks for sharing Deb. Amazing to look back on everything, isn't it? I'm so glad you're doing so much better now.


"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!"
05-30-2006, 01:21 PM   #4
Hiya Cookie aka Debs good to hear your story and im glad your in better health and a inspiring lady too fae sure.
05-30-2006, 03:59 PM   #5
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Join Date: Apr 2006
Location: Ohio

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WOW ... SIS !! You went through a lot of stuff !! Well, anyway let me be one of your friends to say WELCOME ABOARD ... even though we have been in touch via e mail and other way's for awhile I am sure that you will have a great time here with us !!
05-30-2006, 04:14 PM   #6
Spongie Sonya
Wow!!!!!!! Good to hear you've had 18 healthy years since though.


Sonya x
05-30-2006, 05:20 PM   #7
Mama Crohnie
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Join Date: Apr 2006
Thank you guys...very nice of you all. I too wish everyone the best of health always. It certainly can be a pain our Disease, but we all sound strong and able to fight, and not let the disease control us. You're all the best,
Val...Jonny...We must have that baglady/man meeting. Would love to meet you both, and everyone on here...dang if it was only that easy eh?

Love to you all
05-31-2006, 08:53 AM   #8
Thanks for that Cookey

05-31-2006, 10:06 AM   #9
Thanks for sharing, you've been through a lot, glad you came out the other side!! x

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