B
Budgirl
Guest
I just wanted to introduce myself. I just found this site through MYSPACE. I love to find places to go with information about Crohns that is not all medical terminology. I rather talk with people that know exactly what I am going through rather then just read about all the same stuff over and over.
My Story
I was diagnosed with Crohns in 1996. I was 22 years old. It all started with horrible pains and absolute exhaustion. I had no idea what was wrong and the doctors didn't either. I was given a colonoscopy and was told I had an extra long bowel. I left there with a diagnosis of IBS. Once I got home I spiked a fever and severe pains. My mom took me to emergency and due to an elevated Sed rate I was admitted into the hospital. After 3 days they released me with chronic appendicitis. They set me up with a surgeon and he ordered a cat scan because he wasn't convinced it was appendicitis. Well, he was correct, the cat scan showed a partial blockage and severe scar tissue in my illeum. I was immediately put on predisone and asacol. Within a week I was back at the hospital and preparing for an emergency surgery. Once inside they realized how bad it was. I was blocked and also has an abcess on my bladder. They said the blockage didn't show on the colonoscopy because they couldn't get to my small bowel due to how long my large bowel was. That was the first surgery.
I was fairly good for the next 4 years(still had to stay on asacol) and then it all began again. This time they put me on predisone but I was wasn't getting any better. After 1 more year of suffering I blocked again and had to have another surgery. After this one I was ok for about 2 years and it all started again.
So back on the predisone I went. They also changed my asacol to Pentesa because the Asacol started coming out whole. It was moving through me so fast it didn't have time to dissolve. They also began 6MP and remicade. It actually was helping and I was getting along. I was a big softball player and I was started to have really bad pain in my elbows. I went to the doc and told him about it. My arms were actually getting stuck in positions. I could no longer straigten my elbows. The were all crooked. They found a high ANA factor in my bloodwork. They made me stop the remicade due to what they thought was "Lupus-Like syndrome". After alot of x-ray and MRIs I was diagnosed with Avascular Necrosis(Dead Bone Disease). By then both my elbows had collapsed and my knee was close to collapsing. I was told it was a side effect from the high doses of Predisone I have been on throughout the years. By this time I could barley move my arms and I was flaring something awful. It has since been 2 more years. I have had surgery on both my elbows to remove all the bone fragments from the collapse and I am currently recovering from a total knee replacement. I have to have the other Knee done soon. I am also back on Remicade trying to stop a third Surgery. I have been hospitalized at least 4 times(in the past 2 years) to get antibiotics and potassium via IV to control the infection at my past surgery site. My potassium levels drop all the time. I have to take a potassium pill on a daily basis now to try and get it up. Sometimes it just doesn't want to absorb so they hospitalize me until it gets back out of the "danger zone" .
I also have just been diagnosed with a heart condition that is most likely due to the Crohns. I have never heard of the heart being affected by this, but they are trying to figure out what is causing the problem. All they can say at this point is that it is probably somehow related. This just came on suddenly and I'm still trying to accept this as another problem I have to face. I really just want it to all go away!!
I feel like I have written a book and I didn't even touch on every experience I have had. I hope others have written this much. I should have checked first. I just got so excited about hopefully finding other people like me that I starting writing. I apoligize in advance if I have taken up to much space.
I really do have a question for all that reads this. Has anyone else had something go wrong with thier heart????
My Story
I was diagnosed with Crohns in 1996. I was 22 years old. It all started with horrible pains and absolute exhaustion. I had no idea what was wrong and the doctors didn't either. I was given a colonoscopy and was told I had an extra long bowel. I left there with a diagnosis of IBS. Once I got home I spiked a fever and severe pains. My mom took me to emergency and due to an elevated Sed rate I was admitted into the hospital. After 3 days they released me with chronic appendicitis. They set me up with a surgeon and he ordered a cat scan because he wasn't convinced it was appendicitis. Well, he was correct, the cat scan showed a partial blockage and severe scar tissue in my illeum. I was immediately put on predisone and asacol. Within a week I was back at the hospital and preparing for an emergency surgery. Once inside they realized how bad it was. I was blocked and also has an abcess on my bladder. They said the blockage didn't show on the colonoscopy because they couldn't get to my small bowel due to how long my large bowel was. That was the first surgery.
I was fairly good for the next 4 years(still had to stay on asacol) and then it all began again. This time they put me on predisone but I was wasn't getting any better. After 1 more year of suffering I blocked again and had to have another surgery. After this one I was ok for about 2 years and it all started again.
So back on the predisone I went. They also changed my asacol to Pentesa because the Asacol started coming out whole. It was moving through me so fast it didn't have time to dissolve. They also began 6MP and remicade. It actually was helping and I was getting along. I was a big softball player and I was started to have really bad pain in my elbows. I went to the doc and told him about it. My arms were actually getting stuck in positions. I could no longer straigten my elbows. The were all crooked. They found a high ANA factor in my bloodwork. They made me stop the remicade due to what they thought was "Lupus-Like syndrome". After alot of x-ray and MRIs I was diagnosed with Avascular Necrosis(Dead Bone Disease). By then both my elbows had collapsed and my knee was close to collapsing. I was told it was a side effect from the high doses of Predisone I have been on throughout the years. By this time I could barley move my arms and I was flaring something awful. It has since been 2 more years. I have had surgery on both my elbows to remove all the bone fragments from the collapse and I am currently recovering from a total knee replacement. I have to have the other Knee done soon. I am also back on Remicade trying to stop a third Surgery. I have been hospitalized at least 4 times(in the past 2 years) to get antibiotics and potassium via IV to control the infection at my past surgery site. My potassium levels drop all the time. I have to take a potassium pill on a daily basis now to try and get it up. Sometimes it just doesn't want to absorb so they hospitalize me until it gets back out of the "danger zone" .
I also have just been diagnosed with a heart condition that is most likely due to the Crohns. I have never heard of the heart being affected by this, but they are trying to figure out what is causing the problem. All they can say at this point is that it is probably somehow related. This just came on suddenly and I'm still trying to accept this as another problem I have to face. I really just want it to all go away!!
I feel like I have written a book and I didn't even touch on every experience I have had. I hope others have written this much. I should have checked first. I just got so excited about hopefully finding other people like me that I starting writing. I apoligize in advance if I have taken up to much space.
I really do have a question for all that reads this. Has anyone else had something go wrong with thier heart????
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