May 1992
They ran all kinds of tests in the ER (ultra sound, x-rays, blood tests, urine tests, etc.)...fun stuff compared to what was ahead. They found nothing and sent me home on pain killers....it was the next day (due to the fact that she had had enough) that my mother made an appointment with an internist. After seeing the specialist, I began my, now oh so familiar round of tests (Upper GI, Small bowel series, Endoscopy (where they go down the throat) and the, oh so famous, and oh so EMBARRASSING, lower GI - Moooo-back then you were wide awake for the whole thing!)...anyway that is when they found out that I had Crohn's disease...my doctor put me in the hospital, not only to have the tests done all at once but to also pump me up with fat and nutrients I had lost....being only 90 pounds at the time, I could see why....I experienced alot in the hospital ( I grew up REAL quick)....I was only 19. I experienced alot of embarrassing moments-some which I will ever forget (too gross to mention-if you have the disease you know what I mean)....I stated earlier that they "pumped me up with fat"..this is worth explaining...they hooked an IV up to me and dripped pure FAT into my veins (I called it my daily milk shake)....well the substance was so thick that my veins kept collapsing causing unbelievable pain/redness/swelling in my arm...each day they would switch arms to give the other a rest (this was way to much for me to bear....it was bad enough that I couldn't eat (to give my intestines a rest)...I mean who were they kidding , they give you ice cubes and tell you to PRETEND that it's a Big Mac..yeh Right!!!!...it was hard to watch TV because of all the food commercials, (my roommate used to sneak me corn muffins...I knew I wasn't suppose to eat, but when your desperate you do anything)....and what was the big deal of getting weighed EVERY morning at 6am-I haven't eaten people, I can't gain anything, leave me alone!!!.....Anyway I was let go from the hospital after a week's stay...I was on heavy doses of pills for the sickness (23 pills a day to be exact), no raw vegetables, no nuts, no dairy etc. (you know the drill)....in my mind anything was better than being in the hospital. A few days had gone and I was experiencing extreme side effects from (what I thought were the meds)...my doctor at the time did not believe a word I said saying "that it was odd that now that I was out of the hospital I was having pain"...she basically said I was only doing it for attention.

August 1992
So we let a few months go by....
Boy what a mistake...we shouldn't have listened to her...in mid August (while on a family vacation, that also included my boyfriend at the time "BILL")...while out at an all you could eat restaurant...I had made my plate, which consisted of my favorite seafoods, sat down to eat it....I ate 1 mussel and 1 mussel only and boy did the pain shoot!!!...I had had trouble eating before but this was different...I spent most of that night in the bathroom....the next day Bill rushed me home to my primary doctor....she did a quick x-ray and found that my intestines had shut down and the food was backing up (hence the pain I felt while eating)...I was again placed into the hospital (I agreed to this on one term -no fat drip!!-she agreed)....this time they had to pump my stomach...let me tell you that's another experience that I would not like to repeat....they expected my to choke down this tube they placed up my nose and down my throat...and then after it was down, they expected me to keep it down...yeh right!!!..they gave me spray to numb the feeling in my throat....that didn't stop my natural reflexes from kicking in...needless to say I spent most of the night throwing up (they wouldn't give me drugs to knock me out because I had to"tell them if the pain got any better"-!!!!.....the tube remained for 12 hrs...when my stomach was empty they took it out....another week on bowel rest (no food again!). I spent my 20th birthday in the hospital....no cake, just a glass of ice cubes with a candle in it)...At this time I was also experiencing another type of pain, my friends, who I thought were friends, never came to visit, saying they didn't have time or they came last time I was in, (I look back now and I guess it was good that that had happened because I found out who my true friends were)-I was losing my way of life more ways than one....I was released, yet again, with even more meds...this time I was also on a liquid diet of broths, jello's (I can't even look at that stuff now), and the ever so famous ENSURE PLUS...if you've never had to drink this stuff be grateful...its awful, it kinda taste like drinking chalk...I had learned from my barium tests to "chug" liquid quite rapidly so I gave the same approach to the ensure (sure I tried other methods like making it into a milk shake or over ice, warming it, cooling it-nothing changed the taste) I found my way to be the easiest and most effective. During this time period I also became Anemic (not enough iron in my blood)-due to the fact that my body was not digesting the food properly-due to the illness- therefore I wasn't receiving the proper nutrients-so they told me to take iron pills-lets stop right there and say "What were they thinking", who in their right might tells someone who has a weak stomach as it is, to take iron pills (the hardest thing ever to digest)....needless to say I was sick as a dog from taking them. I have since found that taking a multi-vitamin with xtra iron in it-does the trick nicely.

September
Entered 4 year college/found new internist:
Big step...went against all doctors/parents advice...they told me to wait a semester and give my body a rest...but I wouldn't have any of that...I was going crazy/bored staying at home...In my mind -I was an over achiever and noone or nothing was going to keep me from my goals...so me and my ensure set off to school (half of me didn't want to acknowledge I had a problem)....it was great for about 4 weeks...that's when I started getting pain back, I had to sleep sitting up, it was so bad but it was until I started to get pain when I urinated that I wised up, I noticed that my urine started to get milky, and thick....I really got scared, when after having some tomato sauce, I noticed the skin of the tomato in my urine (all that ran through my mind was "great I am just starting my new life in college and yet again this thing is back)....that scared me right back to the doctors office, where more tests where done....they had discovered that when I had had my flair up in August, I developed 8 fistulas (a tube which forms to allow food to travel around the blocked passage)...not only connecting some of my intestines together, but one had made its way to my bladder (which explained my urine status)...this was serious. I was referred immediately to a surgeon. He reviewed my films...I remember that day, as if it happened yesterday...(keep in mind that all surgeons have no bed side manner)...he sat us down and explained that my condition was very serious and I had to undergo immediate surgery (he discussed all the risks and the possibility of coming out with a bag attached to my side where my colon would empty out into-which thank God I never did need)...I was like hey get it out and I will be fine right!!!...then I asked about the incision and how big it would be (big mistake)....he laid me down pointed to my pelvis and slowly moved his hand up above my belly button....at this point I lost it the only words I could mutter out through my tears is "Am I still going to have a belly button!"....he looked at me saying you, "don't need one", being a young women of course I wanted one, he nodded and said I could put in a little detour and hook around it ...I was so hysterical..all I could think about is "I will never where a bikini again"..he chuckled with his casual surgeons laugh and said "would you rather be dead!"...well I guess that woke me up.....we scheduled surgery for the following week (he put me on a heavy doses of steroids so I would make it till then).....At home I was scared....I ran away back to my college apartment....I was going through all these emotions...yes my parents were there for my especially my mom-she wanted to help so bad, but didn't know how and I didn't know what to tell her to do, no one knew what I was going through, the fear, the insecurities, God did I feel alone. My friends took my mind off things and eventually encouraged me to go back for surgery (I eventually had to do that semester over because I was out so long).

October
Surgery (the big day)
I went in on a Monday, went through the all familiar steps of registering and tests. This time they added a new step..prepping for surgery (cleaning your system out)...what fun, more stuff to drink, which meant more stuff to come out (if a ya know what I mean)....I hit my all time low while in an xam room-picture this, about 4 or 5 interns (all male) standing around observing the doctor-who, by the way, is looking in a microscope they had placed up (my private area) into my bladder to see the hole the fistula had formed, each intern asked to take a peak-picture this-me,my legs spread up in the air and 6 guys looking up my "private area"-what a site-boy humility really set in (oh did I mention that the nurse-who was supposed to be there to comfort me throughout the ordeal) was also a guy!!!.........anyway after 24 hrs of cleaning my "pipes" I was ready to under go the knife...Bill (my boyfriend at the time) decided he had had enough, he couldn't take anymore and broke up with me-what a jerk-he never even came for my surgery (I don't hate him now-in a way it took my mind off surgery-still it was wrong)... my parents where allowed in the prep room, where they had to wear gowns (my dad looked like he was ready to give birth in that get up!) I don't know who was more scared, my parents or me...I remembered being wheeled in to the operating room....they put my onto a thin silver table.....I remember how cold it was....I was strapped down (I felt like Jesus getting ready to be crucified)....the surgeon walked in and said "didn't think you were gonna make it" (dry doctors humor), I then reminded him, of making the scar small (every time I had seen him I reminded him of it)....I remember being so scared....all the hustle and bustle around me (all this on my account, I thought)...then out of nowhere, as if sent by an angel this nurse came over to me held my hand and said that everything was going to be ok (she was my friends (Kim) aunt who assists on brain surgeries in the same hospital, after hearing from Kim about my surgery she rearranged her schedule and showed up)...she held me told me to take a deep breath when they placed the mask on my mouth and administered the drug through my IV....I was asleep in no time (if it hadn't been for her I don't think I would have stayed!)...My surgery lasted 5 hours....a little longer than expected...I had lost alot of blood during the operation, they gave me extra dosages of steroids on the operating table (a mistake which I would have to pay for later)...they took out my ileum and about 6 inches of intestines, closed the hole in my bladder, took out 10 fistulas and repaired the damage they had done, they also took my appendix out (since fistulas had rapped themselves around it-hey who needs it anyway).....I remember coming out of anesthetic, I felt as if I had gotten hit by a mack truck!!! I remember being very cold, shivering, I couldn't feel my stomach or my toes. They were telling me to press the button for morphine...it didn't work (broken machine)...once they fixed it, I could feel it working. They were concerned because I was so red...I kept moaning that all I wanted was to go to my room...I kept saying, "I'm red cause I am cold-please!!"....I also remember the guy next to me wanting to get up and leave the recovery room, nurses restraining him and all...not something you want while your trying to recover!.....anyway they finally wheeled me upstairs...I felt each and every bump. Out of the elevator we came...I remember seeing my mom and dad waiting outside my room...My dad (usually the strong and silent type) had begun to cry and had to turn away...I knew it was bad for I never saw my dad cry before...I was full of all kinds of tubes (a tube pumping my stomach, pulse monitor, IV drip nutrients in one arm, IV antibiotics in the other, a catheter (to empty my bladder), a pump/drain in my incision that had to be emptied day and night), my mom held my hand and was strong for me...she held my hand all night sleeping in the chair beside my bed....

Recovery
Spent halloween in hospital
Recovery was a long and painful one..learning to walk all over again (I felt like an infant)...sitting in a chair was a challenge...(I became depressed here I was Captain of the cheer leading squad, top of the pyramid and I can't even walk, my boyfriend broke up with me, my friends deserted me, I felt so alone, just me and my game boy!)........ however, day by day it got better....got tons of flowers and gifts....each day a new tube came out...each night it got easier to sleep (morphine was my best friend).....I ate my first meal (liquids than solids)-boy! was it good (well as good as hospital food could get)...I had my first bowel movement-ouch (I never knew the toilet was so low!)....I had 17 staples closing my wound-it looked great....by the 2nd to last day I was there, they came out..one by one...I held my breath for each one-ouch!!!. I was looking forward to the following day-the day I got to go home ( it was well over a week and I was ready)-Days/Hrs/minutes goes by ever so slow when your in the hospital (TV only goes so far)...anyway the night before I was scheduled to leave, I had just put on the brand new silk nightgown my grandmother had given me days before, I had just come from using the bathroom (once that catheter was out boy did I have to go all the time)....it was then that we noticed a small stain on the front of my gown....we called the nurse and upon closer inspection, we noticed that my incision had begun to leak...they cleaned me up and taped my stomach. I was a little nervous but they released m anyway the next day....got home had take out galore...I had no restrictions on what I could or could not eat....and boy did I eat...I was in heaven.

November
I have no control over my life
That heaven however was short lived....day after I came home, I began to notice that the leaking, from the incision area, was getting worse (all I kept thinking was, oh my gosh, I am splitting at the seems). I was rushed to the ER on sunday....after waiting for well over an hour (sitting in a hard chair) and without being seen I had enough, I told the nurse off, and went home...the next day we saw my surgeon (WARNING: THE CONTENT TO FOLLOW IS GRAPHIC) ...he undid the tape and simply pulled the skin apart...he held my head up and told me to look down revealing the 4 large holes he created in my stomach!!! (now I was really sick)....it was as if I was looking down into raw meat...you see from the large amount of steroids, I was on my body was not healing properly....so he had to open me up clean the wounds and let it heal from the inside out.....he showed my mother how to clean the holes (my mom turned green) for the next 2 weeks.....fortunately for us we have a few next door neighbors who are nurses....one had the morning shift, the other, the day and the other, the night. Cleaning the holes with Q-tips and saline....Now that's a mind trip for ya...having objects placed inside of you while you are fully awake...I couldn't bring myself to look at them....mentally I could not handle them, I mean I knew that they were there...but to see them was to acknowledge them (a mental war I played for quite a few years)...my mother would help me shower cause I couldn't bring myself to clean them.....I remember all the back pain I experienced because I couldn't sleep on my stomach, the boredom of laying there day after day....the depression (wanting to die)...I thought the worst was over with...I paid my toll...I had the surgery...why this....why now....why me!!!!!....Another factor that contributed to my depression was the huge amount of weight that I had gained (another gift from the steroids-my face had gotten so huge I looked as if I was a chipmunk storing nuts for the winter)....I was always thin around 100 pounds ( 90 pounds going into surgery) ....I plumped up to 135...which caused alot of ridicule....I felt fat and not good enough for anyone else, let alone myself (in my mind I was ugly, fat, and had a huge scar forever-no one would ever love me, just look at me!)...also due to reactions from initial medications-half of my right eyebrow had fallen out (till this day it all hasn't grown back)-boy what a beauty I was ....in case your wondering my x-boyfriend Bill, did take pity me and visited once in a while (remember I said PITY)..those 2 weeks were the longest ever....I eventually went back to the surgeon...he said I was all healed. Healed I said...ummm excuse me, my scar!!!!.....it looked like a river, straight, then a lake the straight then another lake and so on....I was so vein back then! He didn't care, "as long as your healed on the inside"-he said......needless to say after my whining, he referred me to a plastic surgeon... I went through a major depression in the months to follow. I was ashamed of my appearance.....I died my hair blond, got colored contacts, pierced a couple of holes in my ears, went weekly to tanning salons...had to buy new clothes I went from a size 3 - to a size 7. Nothing seemed to work, no matter how much I worked on my appearance, nothing could change what I was feeling on the inside, and the obvious scar on my belly...oh I dreamed of wearing a bikini again (how vein I was).....

July 1993
1st plastic surgery
Almost 1 year after surgery for crohn's disease I was prepared to undergo the knife again; to "get that ugly thing off my stomach"....I arranged to see a plastic surgeon....we met and discussed the procedure...he was reluctant due to the surgery...saying its to soon/ wait -he also tried telling me that because I was tan it would effect the healing process (who ever heard of such a thing!)...after much convincing he agreed...so in July back to the hospital I went...the surgery went fine (expect for the fact that I woke up half way through!)....he steri stripped me up and sent me home....weeks passed, months passed...the scar thickened and widened...it seems that I had the surgery a little to soon...the steroids had not yet left my body and I again didn't heal properly. However I was willing to except it, it was much better then it was before.

September 1994
No sign of Crohn's.
Joined a co-ed service fraternity (taking on only 1 activity per doctors request-(I took this one seriously)-I was not going to spread myself thin again)....the frat supported me every step of the way, they were my rock, which I fell back on)...I was initiated into the National Honor Society (somehow I managed to maintain good grades!)....Mid Sept. met the man of my dreams and future husband (Jon) . He was kind and gentle, laid back (considering I am a very high strung person-he calmed me down when I would get uptight-he was/is a blessing)...he was the first guy since surgery, who didn't care about the way I looked (I still had not lost the weight)...and most importantly didn't care about my scar.....imagine that! The thing I hated the most about my body...he didn't care! He cared for who I was on the inside...wow!....He helped me cure my insecurities about myself....made me realize who I was.....things were going great....I slowly began to shed those pounds I lost from surgery....a year passed, I was in love-so of course it flew by.

September 1995
Against doctors advice -
I studied abroad in England (again that over achiever in me and of course some stubborness)...I had to prove to myself that I could do anything I put my mind to...I overcame all these things....now it was time for me....It was a very enlighting experience...I learned alot about myself....I did alot of walking and the rest of my weight finally came off.....as I lost the weight and began to fit in my old jeans...I noticed a lump at the bottom of my scar I didn't pay any attention to it.....until later

August 1996
The lump became worse...
(I thought they might have left something in during my operation-you know you hear of things like that happening)...anyway, it wound up being the surgical stitches...they never dissolved....the surgeon said "not to worry, they will eventually "pop" out"....was he crazy or what!....I convinced him to go in and take it out-(good thing I did cause he found 3 more while he was in there)...I also figured this way we could give my scar one last shot (this time I wasn't on steroids anymore)...the surgery went off without a stitch...speaking of stitches it took 49 to close me up....and when it came time to get them out...Jon was there to hold my hand...It didn't seem that bad....the following week Jon proposed...my life was finally looking up.

Today
I am 28 years old and no sign of major crohns (yes I get little flare ups now and then, but nothing compared to the past)....my scar looks great (well as good as a scar go) time has healed it well-it has turned white (no longer that red/purple yuk! color)....I still have problems eating vegetables,nuts, lettuce (basically any ruffage)-of course that's all the stuff I love!!!-I do on occasion cheat and boy do I pay -but I deal.... anyway graduated in 1995 from Rowan University (with honors I might add)....I am married (Jon and I tied the knot in a Cinderella themed wedding on August 9, 1997)-my wedding day-the 2nd time I saw my father cry: this time they were tears of joy!.....we have a beautiful house and recently bought a dog to celebrate our anniversary....I keep a photo of myself on my desk at work (it was of my when I had crohns and weighed 135)...I find inspiration in it....when I am down-I look at it and think ....I am a strong person I have overcome all these obstacles . (my problems seem small now as to back then)...I live day by day now-of course with the fear that my crohns may come back-I feel however that my bonds are finally broken, my losing streak is over.

You know many people have asked me how I did it, how I made it through such difficult times in my life, why I don't live with resentment/bitterness.....there is no real answer to those questions...I got by the best I could, each day brought on a new problem, therefore a new solution (everyone is different-you have to find your own distractions/your own way of getting through things)...I didn't have a dramatic event that pulled me through, I doubted my faith in God, my exsistance, I asked "why me" each and every day....As I now look back, I don't resent what I went through, for it has made me into the person I am today...I take life in stride now, I laugh at myself, I don't put all the burden upon myself anymore, I don't take the little things forgranted anymore-for its the little things that ad up and make life worth living, I accept help from others, I take breaks/rest, I try not to take things to seriously, I try to have as much fun as possible (who knows what's coming tomorrow), I look forward to each and every day and live life to the fullest -I know that may sound corny, but it's true-when you've been through the stuff I have, you learn to appreciate life a little more.

...I also live by a little motto: Treat yourself to one thing each day-whether it be a cup of tea or a little trinket-be good to yourself-you deserve it after all you've been through (my treat today was writing this letter to you-sharing my story not only helps you, but myself as well)-Thank you!

I've also learned to let it out...its makes you feel soooo much better. I do not regret my experience for I am a better person for it....I also realized that the support I was always looking for, when I was down and lonely was always there....my family....how blind I was!!!!.....all those fights we got in during my illness, was just misplaced anger and frustration....I know now that it was upsetting to see their baby go through that -they felt helpless (my sister was just diagnosed with crohns about 2 years ago...I will be there for her as family should)-the only fear I have is getting pregnant-doctors have already said I am going to have a high risk pregnancy...the crohns might come back-I guess I will cross that bridge when I get to it-as I have with every other step of my life...

I am a survivor!!!! ....and so are you!

Thank You for listening

Dawnie

P.S. Last summer was the first time I wore a bikini...scar and all...you know it wasn't that bad!

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