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Crohn's Disease Forum » Your Story » MY story...


04-21-2006, 03:43 PM   #1
Suzy308
 
MY story...

I think it is great that we can all share a more private and emotional part of our lives here. I feel a need, as time goes on, to share awareness about Crohn's and my other problems, such as having Anemia, Rheumatoid Arthritis, Being B-12 deficient, Iron deficient & Potassium deficient. They are all severe. My G.I. told me I have advanced symptoms, as I'm sure much of you do also. My calves were covered by the symptom Erythema nodosum. If you don't know what that is, they are considered to be skin lesions but not like open wounds or anything, just red bumps that swell up kind of like a big bruise. When swelling occurs, try not to touch it b/c it leaves a mark or indent, like when you touch play dough or silly putty. It itches and can also leave a scar. I am always cold, out of breath, going to the bathroom... sometimes I bleed and it almost never comes out whole. Let's just say, it is one thing after another. I don’t have insurance now so it is hard for me to make doctors visits. I have had this disease for 5 years. When I was 13 I bled rectaly for a brief period of time, so I saw my doctor. He said it was due to stress. HOW DOES A THIRTEEN YEAR OLD HAVE STRESS.....? SERIOUSLY, WHAT IS THERE TO REALLLLLLLLY WORRY ABOUT?????? I was diagnosed when I was 16 years old after having numerous problems... I LOST UP TO 30 LBS! My skin was yellow. I couldn't walk up the steps without being out of breath. I couldn’t eat for the life of me (and I love food). LOTS of abdominal pain, fevers, blood in stools which freaked me out the most, and worst of all I was ALWAYS COLD!!!!!! I went to see my doctor to really get down to the bottom of all this madness and see what the hell was wrong with me. He did some blood work and came to the conclusion that I was Anemic.... Since Anemia usually co-insides with other diseases, disorders, or problems.... he said “since it is so bad, I want you to go to the ER." I was at school in 3rd period when my dad picked me up and took me to the ER at Frankford hospital. I remember having a dream of an éclair glistening in the sunlight on a window sill because I wasn’t allowed to eat anything. It was my brain telling me how much it missed food. I stayed there for 7 hours but since I was still considered a child, they transferred me to St. Christopher’s Hospital for Children. There I stayed for a week with countless amounts of needles, two blood transfusions from my father’s blood. Unbelievable amounts of medication, a pic-line, Endoscope and Colonoscopy. It seemed like forever but it was a huge learning experience for me. They put the tube up my nose into my stomach for the Barium b/c I had some trouble drinking it. Every time I’d take a sip, I would throw up. I even had my own separate doctor come in and look at my finger nails. She said she was on the look out for “clubbing” which is a thick point or ridge in your nail where your body stops producing cells. I had major clubbing. I was from a Wednesday to a Wednesday over the '2000 Easter holiday. When I was in the hospital, only my family came to see me, my dad was there to be there for me every day. Not to mention my mom was having a very severe Colitis attack and was in the hospital also. I had a room mate and she was narcoleptic and every time we would be talking, she’s fall asleep halfway through the conversation, wake up and not know that she had just fallen asleep. Anyway, I had a TPN which is like an IV bag hooked up through my pic-line for about a month and a half so I could heal. Each bag was worth 3,000 dollars. I had the sweats at night from the meds working so well. I would wake up and the sheets were soaked. When I came home from the hospital, I had so much equipment and supplies with me that the hospital provided. I felt like I was moving or something there were so many boxes. I hooked this bag up at 6pm until 6am.... a grueling 12 hour process. I sometimes don’t know how I did it, but I did. I would have to inject myself, well the top of the tube, with my meds 16 times a day, 4 times a sitting. The process it called SASH… Saline-Salumedrol-Saline-Heprine. Saline is the Flush which is basically salt water, then the medicine Salumedrol, then a flush again, then Heperine which is an anti clot so the next SASH can go through okay. It was an annoyance, not being able to do the normal things a 16 year old would do, but I learned to deal with it. I had a nurse come out every Tuesday and Friday every week for a month to see how I was coming along. Eventually she took the 42 inches of tube out of my vein. Half was through the removal, it got stuck because my vein contracted. My dog laid my side because she sensed that I was nervous and scared. I went from Prednisone, to Asacol, to Entocort, to Sulfasalazine, to Ranitidine, to Canasa, to Metronidazole, to Azasan, to Prilosec, Nothing works!!!!! The emotional aspect of the matter can really make you or break you, don’t get me wrong, I was depressed and felt like complete hell, mentally & physically, but what doesn’t kill you only makes you stronger. I’m a very strong person because of this. It really has changed my life. I had flair ups on and off for about 2 years then I felt some problems over the course of the next year. My fathers insurance then ended when I 18... just before I hit 19. I have dealt with a lot of problems knowing my Crohn's was getting worse. Just the thought of something you have NO control over, especially a disease, can cause some serious stress. My dad went out on a limb and got me Cobra. I then saw my G.I. and had put me on Pentasa, which also didn’t work. Being as young as I was I figured to let it go. I did for a year or so then I started to have major flair up’s and at this point it really started to dawn on me that Crohn’s Disease was here to stay. All you can really do is watch what you eat and avoid stress. I am 22 now and have learned some easy ways to avoid flair ups. Excersize regularly, eat Healthy, and avoid stress at whatever cost. Do what makes you happy and this will definitely take a load off. This is something everyone should do, it’s just us Crohnies have more of a reason to look forward to the simple and good things in life. I don’t take people or things for granted anymore because you never know when you might not get a chance again. So, This is my story in a nutshell.
04-21-2006, 03:58 PM   #2
jyarmo
 
Thanks for sharing Suzy!

It sounds like you have definetely been through a lot. It's got to be tough with your mother also suffering with Colitis. It sounds like you have a very supportive family and hopefully this forum can strengthen the support system you have in place.

Welcome!
04-21-2006, 03:58 PM   #3
cookey
Mama Crohnie
 
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Join Date: Apr 2006
Gosh honey, you sure have been through the mill and back...to say the very least. You are so right when you say we have to do what makes us happy, and try to avoid stress at all costs (I know that's hard) but for our self of well being we must do this. Another inspirational story...and I am so glad to hear of your wonderful spirit. By the way...it's nice to meet you,..my name is Deb, and if you ever want to chat...send me a message.
04-21-2006, 04:01 PM   #4
ReeRee
 
You've really been thru the mill haven't you? I'm so glad you're doing better now and have found ways to deal with life with CD. You are SO right about stress and being happy and enjoying the simple things in life. If only I had figured that out when I was your age! I was much more stubborn tho and it took a bit longer with me...

I hope to see you around here as often as you can. I'd love to get to know you better! Oh, I'm Robbie by the way. Ree is my nickname. If you ever need anything, just give a yell.

See ya around the forum!
04-21-2006, 09:15 PM   #5
mikeyarmo
Co-Founder
 
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Join Date: Feb 2006
Location: Toronto, Ontario
It is so unfortunate that you had to go through so much in such a short time. I can only hope that from now you remain healthy. You definately have had to be strong to go through everything that you did, and it is great to see you have a great mindset and strategy for life now.

Thank you very much for sharing your story with us all.
05-25-2006, 08:22 AM   #6
Karen
FRIEND 4 1 & ALL
 
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Join Date: Apr 2006
Location: Ohio

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05-25-2006, 06:12 PM   #7
Jonny
 
Hiya SuzyQ welcome to the site
05-25-2006, 07:33 PM   #8
Kate
 
hey suzy

welcome to the site

all the best

Kate
05-26-2006, 07:50 AM   #9
Mickeyg
 
Hi Suzy, I like your attitude. I try to live my life and not let CD live it for me. I definitely don't sweat the small stuff like I used to.
05-26-2006, 08:12 AM   #10
marco
 
Hi suzy welcome 2 the site
05-26-2006, 10:39 AM   #11
devildee(donna2005)LOL
 
hi suzy
05-26-2006, 11:10 AM   #12
ElaineH
 
Hi Suzie and welcome to the site!! Look forward to seeing you around!
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