Crohn's Disease Forum » Your Story » Me,my story...but I don't always stick to it


06-07-2011, 05:52 PM   #1
lesliegg
 
Join Date: Jun 2011
Location: phila, Pennsylvania
Me,my story...but I don't always stick to it

Hi, my name is Leslie, and this is a quick look at my story. I am 49. I was diagnosed with Crohn's Disease when I was about 25. When I look back on it, I believe I had symptoms of Crohn's in High School but being a shy girl, I never brought it up because I assumed the pain was due to my Mentrual cycle. Which took me years to discuss.
At the time of my diagnosis, I had never heard of Crohn's Disease and either did anyone that I new of. The first time I was hospitalized for it just so happened to be exactly 2 days after my childhood best friend was killed in a horrible car accident. I thought that I was having some kind of a nervous breakdown because of it. I did suffer for weeks (months?) before hand with bloody diarrhea and severe stomach pains but on the day I decided to admit myself to the hospital, I had chills and couldn't stop shaking and freezing. I don't remember the initial Er visit because there are so many that they just blend into each other. I was admitted though and I stayed at that first (local, not specialized) hospital for almost a month, undiagnosed, getting thinner and more lethargic by the day. At some point my mother took charge and had me ambulanced to another hospital where I was diagnosed after about 2 days and many horrible tests, which I thought I would would kill me but they didn't even though at the time I wished they would have. After being diagnosed, I was taken off all food for a month and put given everything I needed intravenously except for pain medicines which were then given intramuscularly. It did not take me long before I then developed a serious drug dependency which wound up being harder to deal with in the long run then the Crohn's Disease.
I finally did get out of the hospital, but as I said, I then had Crohn's Disease and an addiction problem to pain medicine. It took me many years to learn how to deal with my Crohn's because I was in denial about the addiction for most of my "Crohn's life". I believe I put myself through much torture that did not need to happen because I was to afraid too have the pain medicine taken away.
Now, I am 49 years old and have not been on hard Narcotics for about 5 years. I have a colostomy, which I have had for 16 or so years. For much of my "Crohn's Life" I tried to avoid having a colostomy at any cost. I switched doctors, left hospitals pulling out my intravenous lines. (I need a break)
06-07-2011, 08:10 PM   #2
ameslouise
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Join Date: Feb 2010
Location: Pottstown, Pennsylvania
Hi Leslie - Wow, that's some story so far - ya got me on the edge of my seat! Good for you in kicking the narcotics habit. I can see how easily it can happen! How is the colostomy treating you?

What hospital do you go to? I get treated at Presby - there are others here that get treated in Philly as well.

Hope you are doing okay now - fill us in on the rest of your story!

- Amy
06-07-2011, 08:20 PM   #3
lesliegg
 
Join Date: Jun 2011
Location: phila, Pennsylvania
Hey thanks ameslouise, I use to go to Presby. Thats a whole nother story! I go to The University of Pennsylvania now, well, when I keep up with it. I am overdue for a visit. Yikes! I can not believe this site is here and NAMED Crohn's Forum and still it took me 24 years to find it. Well, I had Crohn's for that many years, I doubt the site has been here that long. Was the internet even invented then? God, I am old! Hopefully I will do more on my story soon. Thanks for writing.
06-07-2011, 08:26 PM   #4
ameslouise
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Join Date: Feb 2010
Location: Pottstown, Pennsylvania
Oh no! Sounds like you didn't have a good experience at Presby. I had Dr. Deren as my GI and then Dr. Nusbaum did my first surgeries - he was the best IMO. I now see Dr. Osterman, and Dr. Kann did my most recent surgery - quite a difference going from two old experienced guys to two young whippersnappers!!

Glad you finally found us!! - Ames
06-08-2011, 09:14 AM   #5
Karissa
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Welcome to the forum! I'm glad you found it! I'm new too I would have killed to know about it ten years ago!

-Karissa
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Diagnosed with Crohn's in June 2001, age 11
Severe Ileocecal disease

Surgery on November 6, 2009, age 19
Open ileocecectomy
Currently in remission

Meds tried: Pentasa, Prednisone, Cimzia, Flagyl, Asacol, countless natural remedies

Meds currently taking: 6MP

My reading blog, Addicted to Reading

Walking in Take Steps for Crohn's and Colitis in September, with my team Karissa and Laura's Fabulous Friends. Make a donation here, thank you!
06-08-2011, 11:47 AM   #6
xJillx
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Location: Pennsylvania

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Hi Leslie and welcome! Though it took you some time, I am glad you found us! This is a great place to stay up on top of the latest IBD research and to talk with others who know exactly what you are going through. I look forward to seeing you around!

PS - I go to Jeff in the city.
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Jill

Diagnosed with Crohn's Disease - July 2010
Diagnosis of Crohn's Disease Retracted - October 2011

I am still sick and so confused...
06-25-2011, 08:21 PM   #7
lesliegg
 
Join Date: Jun 2011
Location: phila, Pennsylvania
[QUOTE=lesliegg;303697] Hi, my name is Leslie, and this is a quick look at my story. I am 49. I was diagnosed with Crohn's Disease when I was about 25. When I look back on it, I believe I had symptoms of Crohn's in High School but being a shy girl, I never brought it up because I assumed the pain was due to my Mentrual cycle. Which took me years to discuss.
At the time of my diagnosis, I had never heard of Crohn's Disease and either did anyone that I new of. The first time I was hospitalized for it just so happened to be exactly 2 days after my childhood best friend was killed in a horrible car accident. I thought that I was having some kind of a nervous breakdown because of it. I did suffer for weeks (months?) before hand with bloody diarrhea and severe stomach pains but on the day I decided to admit myself to the hospital, I had chills and couldn't stop shaking and freezing. I don't remember the initial Er visit because there are so many that they just blend into each other. I was admitted though and I stayed at that first (local, not specialized) hospital for almost a month, undiagnosed, getting thinner and more lethargic by the day. At some point my mother took charge and had me ambulanced to another hospital where I was diagnosed after about 2 days and many horrible tests, which I thought I would would kill me but they didn't even though at the time I wished they would have. After being diagnosed, I was taken off all food for a month and given everything I needed intravenously except for pain medicines which were at that time given intramuscularly. It did not take me long before I developed a serious drug dependency for narcotics- which wound up being harder to deal with in the long run then the Crohn's Disease.
I finally did get out of the hospital, but as I said, I then had Crohn's Disease and an addiction problem to pain medicine. It took me many years to learn how to deal with my Crohn's because I was in denial about the addiction for most of my "Crohn's life". I believe I put myself through much torture that did not need to happen because I was to afraid too have the pain medicine taken away.
Now, I am 49 years old and have not been on hard Narcotics for about 5 years. I have a colostomy, which I have had for 16 or so years. For much of my "Crohn's Life" I tried to avoid having a colostomy at any cost. I switched doctors, left hospitals AMA pulling out my intravenous lines and once even hitchhiking home because I had no cash. I was lucky that 2 safe and friendly guys chose to give me a ride, practically all the way home.
One day when I was a patient at Presbyterian Hospital, I was scheduled for a colonoscopy. I had had these procedures many times before but this one was with a new doctor. I was a bit more concerned than usual and I told the doctor that I wanted her to do this procedure herself and not an attending physician. She assured me she would. I had such a high tolerance for pain medicines at the time that although I was sedated I was shocked into wakefulness by my doctor screaming at the attending fellow some thing about never removing a polyp that way. This is the same doctor that assured me she was doing the procedure herself about 15 minutes prior.
When I came to a second time I was being wheeled back to my hospital room. Soon after getting there, I felt a tightness in my chest and I called for the nurse who took my blood pressure and listened to my heart and told me I was fine but the doctor would come by soon and check on me. The doctor didn't come by. I waited for a half hour and rang the nurse again. She told me the doctor was on her way. A half hour later, the same thing. After a couple hours I was feeling really desperate because although my chest did not hurt, I knew this feeling was not similar to anything I had ever experienced after a colonoscopy. This is one of the times I pulled out my intravenous lines and left AMA. This is also the time I hitchhiked home.
When I got home I went to visit my sister. I didn't even realize how I looked. She was use to seeing me looking strange from to much pain medicine but she told me I looked bazaar. I looked in the mirror and my whole neck was close to the size of my head. Then I noticed that rubbing my hands over any part of my skin felt like when you pop those bubble wrap things. Okay, now I was really scared. I called the local emergency room and they were clueless as to what it might be. I still could not get a hold of my doctor who was there for the procedure. Finally I called my kids pediatrician whose opinion I always trusted. She asked me if I had had any procedures done lately and said it sounded like on of my organs was punctured and air was filling up my body. If it got to my heart I would die. She said I needed to go to the emergency room right away. My family did not let me mess around after that, and my husband drove me to The Unniversity of Pennsylvania Hospital Emergency Room where they told me I had to have exploratory surgery.
At that point in my life, I thought I had it tougher than anyone else in life already. The ER doctor told me that the surgeon would not come to the hospital until the consent form that I needed to sign was signed and ready. It was 3am in the morning by then. I did not want to sign that form. The ER doctor told me that I could die any minute. A part of me felt relief that my life was gonna end. Even on all that pain medicine, I was always in agony. I did not think that I was ever going to be able to live life the way I felt my life should be. Then my mother and sisters came into the room and were all puffy faced and crying. Everyone was begging me to sign that form. I kept asking the ER doctor what they were going to do and it was sounding worse and worse. He said that they didn't know what they would find and that they might have to remove anything from my voice box down. A colostomy was on the list. It was a huge concern of mine that if I got a colostomy, it could be reversed. Not only was it my concern but my mother was horrified that I might have to live like that and I picked up on it and fed on her fear. Of course it was vanity. I was going to let vanity kill me off.I definitely did not want to have a colostomy though. I spent 10 years trying to avoid that colostomy through pain, diarrhea, fistulas and medical torture and now through the fault of my doctor, not Crohn's I was staring at that realization smack in the face! :confuse
I came out of my anestesia fog hearing 1.The nurses talking about how much pain medicine I was being given and I actually remember being shocked that the one nurse said she pores the rest in the sink when she doesn't use a whole vial. That's definitely a person with a Narcotics problem. The second thing I heard was my mother asking the surgeon if my colostomy could be reversed and him saying yes. I love my mom and I know she thought she was looking out for my best interest but hearing the relief and desperation in her voice made me all that much more embarrassed and horror-stricken about dealing with the colostomy. Now I know that it isn't an option most people would consider for themselves, to have a colostomy bag, but it also isn't the worst thing in the world to deal with. The shame of having one is definitely worse for me than the dealing with it day in and day out part. (I need a break)
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