Crohn's Disease Forum » Your Story » Hi I'm Ashlee...

06-03-2006, 08:04 PM   #1
Hi I'm Ashlee...

I am 24 years old and was diagnosed with Crohns 10 years ago at the tender age of 14. It was difficult to be diagnosed with a socially unacceptable disease, when at 14, I wanted nothing more than to fit in with my peers. The massive dose of steroids didn't help that cause. At the age of 18 I had my first surgery where they removed my illium and appendix. It went amazingly well and I was out of the hospital in 3 days with a two inch horizontal scar (that was not even visible when I wore my bikini)! I was so thankful for that. After trying every medication under the sun for Crohns (including going into anaphalictic shock from remicade and being in two clinical trials at the Mayo Clinic) In 2003 I had to have another bowel resection. I spent my 21st birthday with a tube down my nose and blew out a candle in a cup of ice chips. Very depressing to say the least. Not to mention my "gross" long scar that went all the way down my abdomin. I later realized that was the least of my problems. A week after my surgery I spiked a high fever, was throwing up, in a ton of pain, and becoming delirious. They did a CT scan and found that my intestines did not heal where they reconnected me and my bowels were leaking into my abdominal cavity. I had peritinitis and had to have emergency surgery immediately. I was devistated to have to recieve a colostomy, even though it would only be for about 6 months. When I was finally able to get the NG tube out of my nose and allowed to eat again, I violently threw up the entire evening. I eventually had the NG tube placed back down my nose. A few days later we would try to take it out and I was allowed to eat again and I would once again be terribly sick all night and have to get the NG tube put back down my nose. After a few weeks of this the nurses told me I was the best patent they had ever had when it came to getting those put in. At least I could do something right I suppose! They finally did more tests and found that I also had pacrentitis. I reallly started to believe that I would never feel okay again. I was in the hospital for over 4 months straight, and didn't eat for about 6months.lost almost all of my friends because I didn't really fit into their college "go out and be crazy" lifestyle. On the rare occasions that they did visit they couldn't even look at me and treated me differently. I know it must have been hard to see me that sick (I was also swollen from steroids) with tubes all over the place, but it was so hard for me to be treated so differently when I knew I was still the same person. My parents however were amazing. My mom stayed every night and my Dad would drive an hour both ways to see me when he got off work, and would stay on the weekends, which is when we would have our "movie dates". My Mom became my best friend and was one of the only peope who really saw what I was going through and would cry with me, and also managed to help me see humor when I didn't want to but needed to laugh. I was finally able to come home and still had a difficult road ahead of dealing with my colostomy bag, Learning how to eat again (starting with broth), learn how to set up my TPN and take care of my PICC line, etc. My stoma began to prolapse and I had to move my reversal surgery up a few weeks (no complaining here). While they were in there they also took out my gallbladder because it was full of stones, which they think was contributing to the pancrentitis. After all the surgeries I had a difficult time sitting up and my stomach looked crazy! I didn't have much of a belly button anymore. I finally became able to sit up without having to roll to my side first, and so many more accomplishments that meant alot to me, the biggest being just the ablitity to walk. For the longest time I had to actually crawl up the stairs and couldn't stand up by myself after bending down, because of how much my muscles had atrophied. It was so hard for me to go through all of these things, but I realized that they made me appreciate the little things in life. The situation helped me to realize that a good nurse VS a bad nurse can mean the difference between having a good day and a bad day, which lead me to want to become one of the "good ones". It helped me find my purpose in life! I would never want to go through it again, but I know that because I made it through that I will be able to make it through anything life has to throw at me. This past February I had to have another surgery. They found that my rectum was horribly prolapsing and all my abdominal muscles had collapsed and fallen so they had to tack those to the bones in my back. (so thats where the back spasms were coming from!) They also removed a ton of scar tissue, adhesions, diseased areas, and redid the area where they reversed my colostomy because it was put back together at an angle. Before I was nocked out I was loopy on versid and asked one of the surgons standing over me if he would be able to fix my scar "while he was in there". They all started to laugh and then he told me that he would be happy to help me out. Five hours later I emerged with a new belly button, flatter scar, and without a lot of "junk". I was in a ton of pain and my arm was numb bc my epidural was coming out. It was strange not being able to hold a pen in my hand or have any control over it, although I was more concerned with my physical discomfort. I was feeling much better in a few days though, and aside from them finding a hematoma and getting a drain tube placed a week later, my post op was virtually complicated free. What a nice change!!! I am feeling much better now but I still deal with pain and cronic D every day. I think that is just something that Im going to have to deal with for the rest of my life. I am very happy now though and Im in school to become a nurse. Sorry for the book. I started writing and it all just came out.
06-03-2006, 08:12 PM   #2
Hi Fish twas good to read your story and im glad ur becoming a nurse and are happy.Been thru alot wow.All the best to you and welcome to these forums :-)
06-03-2006, 08:18 PM   #3
mikeyarmo's Avatar
Join Date: Feb 2006
Location: Toronto, Ontario

Thank you for sharing that with us. I cannot believe what you have been through so far in your life, but you are truly a remarkable person for being able to go through it all. I also had supportive parents who helped me out a lot during my stay in the hospital and always at home, so I know how much that helps. I just cannot believe all that you went through though. It is just so heartbreaking to read.

I want to welcome you to the forum though, and hope that you will share a lot more with us in the future. We could all use the help of a good nurse too . But seriously, it is wonderful that you have chosen that as your profession, as you know more than anyone what a nurse can do to make a patients stay memorable (both in a good and bad way).
06-03-2006, 08:31 PM   #4
Mama Crohnie
cookey's Avatar
Join Date: Apr 2006
Hi Ashlee, very nice to meet you. Welcome to our home. I'm so very happy that you are feeling better, 14 yrs old is such a young age to cope with Crohns Disease. I understand how you must have felt, it now sounds like you are a strong lady with a wonderful job, and well on your way to living a better life. It does break my heart to read of so many young people like yourself dealing with our Disease, on the other hand the strength I read from your stories, is very touching. I'm glad that we all can accept it..and move on to become the strong people we are today.

I'm glad you're here Ashlee, if you need an ear or a shoulder...we are all here for you.
06-03-2006, 08:42 PM   #5
I'm Leah soon to be 26. Hope you are well.
Take Care
06-03-2006, 10:42 PM   #6
Senior Member
ladyB's Avatar
Join Date: May 2006
Hi, Ashlee
Wow, what a story.
You have such a great outlook inspite of everything. Kuddos
Sorry to hear all you've eperienced.
I think you'll enjoy this site.
06-04-2006, 12:14 AM   #7
Senior Member
kc0eks's Avatar
Join Date: Apr 2006
Welcome to the forums.
You have been through a lot, that is for sure. I hope things are going well, today at least.
Doing a job RIGHT the first time gets the job done. Doing the job WRONG fourteen times gives you job security.
06-04-2006, 04:44 AM   #8
Hi Ashlee

wow what a story you have been through it glad you found us (((((((hugs)))))))) hope to see you arond
06-04-2006, 07:37 AM   #9
Spongie Sonya
Hi Ashlee

Thank you for sharing your story. I'm sure we all sit here complaining about our own issues, but reading a story like yours really puts things into perspective and makes me realise just how fortunate I am. You sound like an amazingly brave person.

06-04-2006, 11:51 AM   #10
Hey Ashlee, welcome to the site, lots of really nice people here. sounds like youve been through enough! hope your well.
06-04-2006, 12:06 PM   #11
bubazoo's Avatar
Join Date: May 2006
Hello Ashlee,

Welcome to crohnsforum I too am new here, and got crohns at a very young age like that.. I was 13 when I first started seeing signs like that, I had allergies to powdered mac n cheese ever since I can remember, so you are in good company here

I have a friend from Ft Wayne, where my parents live, who has had Crohns since birth, and her mother started a crohns awareness picnic here in Indiana last year.. I could not attend, because I cannot see well enough to drive a car, and could not get the transportation to go, since it was away from the city I live in, so I could not attend, but once I get my crohns under control, hopefully soon, I'm going to try the Bioptic driving lessons again so that I can go and make a difference to many who suffer with this condition...

I got my Crohn's in a different way then most people... My mother got Rubella while she was pregnant with me.. (called Congenital Rubella Syndrome). Its basically like the Measles, when a pregnant mother gets it, the baby can be born with some serious birth defects. I was born totally blind, while over time with surgery they were able to restore my eyesight partially, even though I have some eyesight now, I still can't drive a car, see the blackboard in school even from the front row, read a menu board at McDonalds, I can't even see the scoreboard while bowling, yet I can see close up stuff, like the computer, the TV if I sit close enough, and other such things.. Anyway, what that has to do with Crohns is, Congenital Rubella Syndrome (CRS as its referred to) also causes after effects, one of which, is the immune system becoming overactive.. reason this happens, is because the immune system is trying to fight off the Rubella virus that is still inside my bloodstream from birth, so I will basically have crohns the rest of my life no matter what they do.. even though I didn't notice it until later, I've always had allergies to foods, laundry detergents, soaps, all kinds of stuff like that, so there thinking I've had this also since birth but just being diagnosed with it 9 years ago..

I know what you mean, though, about social issues... I was made fun of constantly as a child for my poor eyesight.. Kids can be so cruel.. I remember this one time, I went to the library for English Class, and when I got there all the seats but a couple in the back were full.. So, because I couldn't see back there, I was wondering around looking for a place to sit.. instead of helping me, all the kids were giggling to themselves, and a few of the guys would trip me on purpose and the whole class would laugh, finally I just ran out in tears.. my teacher ran after me, but what she said didn't help much, so I went home and my mother about threw a fit... but it was something that happens to me everyday.. finally as I became I teenager, I started taking bodybuilding classes, and one day in study hall, a kid started making fun of my bottle cap classes, and I just grabbed him and pushed him up against the wall lifting him up... By this time, I wasn't feeling very good about myself at all, I wanted to punch the guy out, but somehow I could not, and just let him down and ran out in tears again.. It was then that I realized, revenge is not the best idea.. but after awhile I grew up, and realized, whoever doesn't like me, its their tough luck, because someday someone out there will like me for who I am, and by then everyone who ever made fun of me will be jealous and wished they hadn't treated me that way all those years ago.. still waiting for that person to come along, but in the meantime i am in no hurry, its all good I just decided, not to let what other people think of me bother me anymoore, and as the years went by, I grew up and realized I did not care what other people thought, what matters is how you think of yourself, and knowing that God loves you just the way you are

take care

Last edited by bubazoo; 06-04-2006 at 12:21 PM.
06-04-2006, 03:40 PM   #12
Hi Ashlee,

My god you've been through the mill buddy. I really hope that things settle down for you from now on, and that your studies go well. It sounds like you have a wonderful outlook on things, no matter how hard things have been for you - a wonderful addition to the medical profession in other words!!!

Lovely to read your story - hope to hear more from you.

06-04-2006, 07:10 PM   #13

It was really sweet that you all replied and gave me such nice words of encouragement and understanding. I know that so many of you have experienced similar pains, even if not the same situation. Its nice to know there is somewhere to be accepted for who I am. Thank you again. I am really looking forward to being involved on this site.

06-04-2006, 08:37 PM   #14
Hey ashly

you story is amazing hats off to you and what you have experienced. im sure you will be an assett to the site

all the best hun and pm me if ya like

06-05-2006, 02:07 PM   #15
Karen's Avatar
Join Date: Apr 2006
Location: Ohio

My Support Groups:

Ashlee .. I'm GRANDMA BEAR aka KAREN & so I'd like to take this time to say WELCOME & I am sure that you will find this to be a wonderful place to come so make yourself at home & jump right in & post away !! Take care and See you around soon !!

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