- Location
- Yonkers, NY
Well, Hi there. I'm Ali. I was disgnosed with Crohn's in January 2010. 
rder: I apparently had Crohn's for a very long time-but honestly had never thought certain things were out of the ordinary, probably because I faced the same symtoms every single day.
In 1/10 I had my first endoscopy/colonoscopy procedure after going to a few doctors who literally told me I was having stomach spasams and asked me if I thought I belonged in a hospital? At that time I had absolutely NO idea what Crohn's disease was. I didn't know it existed. This doctor that I saw-that accused me of basically making up imaginary pain-is a world renowed Gastroenterologist.
I finally made a trip to the ER with a new doctor on my side-and he saw the extreme distended belly I had at the time and the severe swelling of my joints-ankles, knees, fingers, & wrists.) And off I was on into Crohn's Diease...
I started off with Entocort & pentasa. That was a nightmare to say the least. I spent more time in the bathroom-curled over a toilet then I did working and ended up getting let go. Although I know it was unfair termination due to an illness I had been diagnosed AFTER I had been hired.. I didn't do anything. I was genuinely too sick too.utahere:
So off to a another Dr's visit and the next step-predisone. I like to call this the crazy pill because I TURNED into a complete monsters. I was having hot flashes like a menopausal woman at 25. It was a nightmare. I ate everything in sight and ended up gaining 20 pounts. I was so angry and confused all the time-and mean to people. Needless to say, it wasn't working. I was still in pain and even worse-my anxiety was a nightmare.
After no one having any other answers at this hospital-I was transferred to Mt. Sinai hospital in NYC by ambulance in June '10 where I met with a team of doctors who finally got it. They took care of me and I ended up on Remicade/azathioprine/Cipro.. and off I was for a month, feeling great!
Two months later, those drugs stopped working and I had another major flare up. I was so swollen from my head to my toe, it didn't even look like me. :ywow:
I ultimately had my first bowel resection after that-in September 2010. They took out 18cm of of my small bowel. And I felt wonderful!
For two years-I lived Crohn's free! I felt wonderful (still had a crud amune system!) But I felt so much better! I was able to keep a job and move up rather quickly. (What I should mention though is that during this time, I did not have insurance and could not afford to pay for the maintenance drug to keep my crohn's at bay-which was plannned to be remicade. No job = no insurance-dad doesn't give a crap about his daughter = no insurance.
So in July 2012-my mom had a major stroke. It was the scariest time in my life. And as I stressed & stressed - my crohn's flared up - really bad again.
I ended up back at Mt. Sinai-with new insurance that my mom was able to get for me!
I was immediately given a dose of remicade in the hospital to helo calm things down. Well, little did I know that this drug - that had helped me so much before - almost killed me. 2 weeks after my infusion-I had serum sickness. No one in the ER knew what it was and actually had to google it online just to figure out why my body was covered in serere rashes, I couldn't move the the imense pain in my joints, the hives that were so itchy, the fever that was climbing up and away, my throat that was closing, and my fingers that began to turn blue until I was finally given the heaviest dose of benedryl possible and a steroid. I waited 4 hours before anyone did anything to help me.
A place that had been my saving grace just 2 years ago-almost let me die.
I spent many more nights in the ER from August-December. I tried just taking azathioprine; humira once every other week; humira once every week; humira twice every week-while taking azathioprine and absolutely not one drug helped me. I wasted hours and hours of my life begging for an answer and not one came.
Then...there was surgery. Again. In January '13 I had a second bowel rection where now a piece of my small intestine is it's place.
I spent 7 days in the hospital after that surgery. It was very difficult. I was do dehyrdated from all the months of being sick; no veins could be found in my arms. I was stuck 19 times in one sitting in my hospital room before I demanded that they stop! They had to put a triple catherder in my neck. I then began to have serious trouble urinating. I just couldn't A second catherder was placed in-leaving me in the hospital for even more time. Then, the day they took the catherder out-a doctor came in and accused me of only staying in the hospital for pain treaetment. She accused me of being addicted to pain medication. I HAD JUST HAD SURGERY TO MY ABDOMENT AND THE PAIN MANAGEMENT TEAM SAID I WASN'T EVEN USING THE MAX DOSE OF MY MEDICINE!:ywow:
A week later I get my period early and again am unable to pee at home. Called my surgeon and found out I had a severe UTI-nothing anyone test for in the hospital.
Took Cipro for 10 days. IMMEDIATELY began feeling severe hot/cold sweats all day long. I have had small fevers alongside this problem. The highest it had been is 101.2. So I called my surgeon again. Back I was to his office and ok he thought I was-just needed a catscan to make sure there was no infection.
Last night my fever spiked and I e-mailed him beginning for a solution. I have been since July now. He sent me back to the magical ER-which used to be my saving grace. There I was so poorly mistreated. Numerous times I was told my name wasn't even in their system. I lied on a gurney for hours upon hours, soaking wet in my own sweat with blankets covering me from head to toe.
When I finally got to catscan, 7 hours later-I was rectally & through an IV given contrast- I was unable to keep it down my mouth- the rectal solution made me feel like I was having severe abdominal cramping pain so they stopped.
As the radioologist left the room-they said the test was about to begin before 1 minute later she comes back into tell me that they did ALL Of that-for nothing. The doctor's wanted an MRI. I burst into tears. My entire body was covered in my own sweat. I had expressed to her that my surgeon had wanted me to get a catscan and to please refer to him. So I lied there for a half an hour, trying with everything in me to keep this contrast inside of me.
So, I did. They finally did the test an hour later. I spent 20 minutes in the bathrrom. :redface: It was so painful!
When they finally came to transfer me from the CT Scan-my doctor's resident had already "read" the results and just with a quick swipe of her hand she goes.."It's not an infection or anything really bad like that. It just looks like you have more inflammation in your illeium." I.E. I Still had Crohn's.
No mediation was given to me as I was discharged from the hospital with not one good explanation. I still don't really know what is going on or if it is crohn's-or inflmation-and WHERE are these burning hot sweats/freezing cold chills coming from?? I was told to take tylenol-which another doctor had just told me not to take because it will mask a serious infection anywhere in your body.
Moral of my story: I have no answers after so many months of people telling me this will work. No this will work. You're gonna feel amazing!
:/ I don't. And I don't know why.
I'm seriously considering changing hospitals-as I don't think any person should be treated as I was today. Crohn's Disease is not a joke and when someone tells you it's back-it shatters your world. Or at least it did today.
So that's my story for now. Hopefully it'll be a bit brighter soon. :ytongue:
rder: I apparently had Crohn's for a very long time-but honestly had never thought certain things were out of the ordinary, probably because I faced the same symtoms every single day.In 1/10 I had my first endoscopy/colonoscopy procedure after going to a few doctors who literally told me I was having stomach spasams and asked me if I thought I belonged in a hospital? At that time I had absolutely NO idea what Crohn's disease was. I didn't know it existed. This doctor that I saw-that accused me of basically making up imaginary pain-is a world renowed Gastroenterologist.
I finally made a trip to the ER with a new doctor on my side-and he saw the extreme distended belly I had at the time and the severe swelling of my joints-ankles, knees, fingers, & wrists.) And off I was on into Crohn's Diease...
I started off with Entocort & pentasa. That was a nightmare to say the least. I spent more time in the bathroom-curled over a toilet then I did working and ended up getting let go. Although I know it was unfair termination due to an illness I had been diagnosed AFTER I had been hired.. I didn't do anything. I was genuinely too sick too.
utahere:So off to a another Dr's visit and the next step-predisone. I like to call this the crazy pill because I TURNED into a complete monsters. I was having hot flashes like a menopausal woman at 25. It was a nightmare. I ate everything in sight and ended up gaining 20 pounts. I was so angry and confused all the time-and mean to people. Needless to say, it wasn't working. I was still in pain and even worse-my anxiety was a nightmare.
After no one having any other answers at this hospital-I was transferred to Mt. Sinai hospital in NYC by ambulance in June '10 where I met with a team of doctors who finally got it. They took care of me and I ended up on Remicade/azathioprine/Cipro.. and off I was for a month, feeling great!
Two months later, those drugs stopped working and I had another major flare up. I was so swollen from my head to my toe, it didn't even look like me. :ywow:
I ultimately had my first bowel resection after that-in September 2010. They took out 18cm of of my small bowel. And I felt wonderful!
For two years-I lived Crohn's free! I felt wonderful (still had a crud amune system!) But I felt so much better! I was able to keep a job and move up rather quickly. (What I should mention though is that during this time, I did not have insurance and could not afford to pay for the maintenance drug to keep my crohn's at bay-which was plannned to be remicade. No job = no insurance-dad doesn't give a crap about his daughter = no insurance.
So in July 2012-my mom had a major stroke. It was the scariest time in my life. And as I stressed & stressed - my crohn's flared up - really bad again.
I ended up back at Mt. Sinai-with new insurance that my mom was able to get for me!
I was immediately given a dose of remicade in the hospital to helo calm things down. Well, little did I know that this drug - that had helped me so much before - almost killed me. 2 weeks after my infusion-I had serum sickness. No one in the ER knew what it was and actually had to google it online just to figure out why my body was covered in serere rashes, I couldn't move the the imense pain in my joints, the hives that were so itchy, the fever that was climbing up and away, my throat that was closing, and my fingers that began to turn blue until I was finally given the heaviest dose of benedryl possible and a steroid. I waited 4 hours before anyone did anything to help me.
A place that had been my saving grace just 2 years ago-almost let me die.
I spent many more nights in the ER from August-December. I tried just taking azathioprine; humira once every other week; humira once every week; humira twice every week-while taking azathioprine and absolutely not one drug helped me. I wasted hours and hours of my life begging for an answer and not one came.
Then...there was surgery. Again. In January '13 I had a second bowel rection where now a piece of my small intestine is it's place.
I spent 7 days in the hospital after that surgery. It was very difficult. I was do dehyrdated from all the months of being sick; no veins could be found in my arms. I was stuck 19 times in one sitting in my hospital room before I demanded that they stop! They had to put a triple catherder in my neck. I then began to have serious trouble urinating. I just couldn't A second catherder was placed in-leaving me in the hospital for even more time. Then, the day they took the catherder out-a doctor came in and accused me of only staying in the hospital for pain treaetment. She accused me of being addicted to pain medication. I HAD JUST HAD SURGERY TO MY ABDOMENT AND THE PAIN MANAGEMENT TEAM SAID I WASN'T EVEN USING THE MAX DOSE OF MY MEDICINE!:ywow:
A week later I get my period early and again am unable to pee at home. Called my surgeon and found out I had a severe UTI-nothing anyone test for in the hospital.
Took Cipro for 10 days. IMMEDIATELY began feeling severe hot/cold sweats all day long. I have had small fevers alongside this problem. The highest it had been is 101.2. So I called my surgeon again. Back I was to his office and ok he thought I was-just needed a catscan to make sure there was no infection.
Last night my fever spiked and I e-mailed him beginning for a solution. I have been since July now. He sent me back to the magical ER-which used to be my saving grace. There I was so poorly mistreated. Numerous times I was told my name wasn't even in their system. I lied on a gurney for hours upon hours, soaking wet in my own sweat with blankets covering me from head to toe.
When I finally got to catscan, 7 hours later-I was rectally & through an IV given contrast- I was unable to keep it down my mouth- the rectal solution made me feel like I was having severe abdominal cramping pain so they stopped.
As the radioologist left the room-they said the test was about to begin before 1 minute later she comes back into tell me that they did ALL Of that-for nothing. The doctor's wanted an MRI. I burst into tears. My entire body was covered in my own sweat. I had expressed to her that my surgeon had wanted me to get a catscan and to please refer to him. So I lied there for a half an hour, trying with everything in me to keep this contrast inside of me.
So, I did. They finally did the test an hour later. I spent 20 minutes in the bathrrom. :redface: It was so painful!
When they finally came to transfer me from the CT Scan-my doctor's resident had already "read" the results and just with a quick swipe of her hand she goes.."It's not an infection or anything really bad like that. It just looks like you have more inflammation in your illeium." I.E. I Still had Crohn's.
No mediation was given to me as I was discharged from the hospital with not one good explanation. I still don't really know what is going on or if it is crohn's-or inflmation-and WHERE are these burning hot sweats/freezing cold chills coming from?? I was told to take tylenol-which another doctor had just told me not to take because it will mask a serious infection anywhere in your body.
Moral of my story: I have no answers after so many months of people telling me this will work. No this will work. You're gonna feel amazing!
:/ I don't. And I don't know why.
I'm seriously considering changing hospitals-as I don't think any person should be treated as I was today. Crohn's Disease is not a joke and when someone tells you it's back-it shatters your world. Or at least it did today.
So that's my story for now. Hopefully it'll be a bit brighter soon. :ytongue:
