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HeidiZoo
Guest
Hi, my name is Heidi, I'm 27, and I was misdiagnosed for over two years. Doctors kept thinking I had Lupus... which I can understand to some extent because it is another autoimmune disease. It all started with joint pain, particularly in my knees, which kept getting worse. In 2/05 I had knee surgery, which made my knee worse. Then in 4/05 I had three cervical lymph nodes swell up significantly within five days. They immediately had to be removed and the doctors thought I had Lymphoma... but the biopsies came back negative. Then a CBC showed that I had a dangerously low white blood cell count and I was told I had Acute Leukemia. So, I had a bone marrow biopsy, which also came back negative. (My white blood cells are still below normal.) Throughout all of this, other symptoms I was experiencing were:
-severe dry eyes
-severe chronic fatigue
-nausea
-vomiting
-rashes on and off
-Raynaud's Phenomenon
-spiking fevers
-abdominal pain
-shortness of breathe
-night sweats
-bruising easily
-thinning hair
-weight loss
I saw many specialists and went to the ER countless times! Then the abdominal pain became more sharp so I had a CAT scan. It showed a pancreatic tumor. I was scheduled for surgery immediately and I had a full Whipple Procedure. I had 1/3 of my pancreas removed, both my bile duct and gall bladder were removed, and then my digestive system had to be rearranged and put back together. I was not expected to survive and 80% of pancreatic tumors are cancerous... mine came back benign. I was on intestinal tube feedings for four months. During those four months I almost lost my life many times. I'm 5'6" dropped down to 95lbs. I'm going to leave out pretty much everything I went through to recover because I'm just happy to still have my life. There were a few months that I started to feel human again and returned back to work, but I still had all of the above symptoms. Then in the beginning of 8/06 the nausea and vomiting became very severe and I was losing weight fast. Because I didn't have diarrhea, Crohn's never crossed anyone's mind. Then duing one of my ER visits, the doc referred me to a GI specialist. I saw him and I was thoroughly impressed! He knew I had Crohn's before the tests even came back. He ran bloodwork (and IBD Panel) and he did a colonoscopy. Low and behold, I had Crohn's. After starting on Prednisone, Pentasa, and Folic Acid, I was a whole new person!!! I started on 40mg of Pred once daily for six weeks, then 30mg for four weeks, then 20mg for one week and ended up having to go up to 25mg, which is what I'm on now. I don't like being on the Pred because of all the long-term side effects, but I really don't have much of a choice right now. I'm looking forward to my Crohn's being under control some day. I'm just happy to have a diagnosis!!! Anyway, that's my story. I'm sure you'll be hearing from me again.
Heidi
-severe dry eyes
-severe chronic fatigue
-nausea
-vomiting
-rashes on and off
-Raynaud's Phenomenon
-spiking fevers
-abdominal pain
-shortness of breathe
-night sweats
-bruising easily
-thinning hair
-weight loss
I saw many specialists and went to the ER countless times! Then the abdominal pain became more sharp so I had a CAT scan. It showed a pancreatic tumor. I was scheduled for surgery immediately and I had a full Whipple Procedure. I had 1/3 of my pancreas removed, both my bile duct and gall bladder were removed, and then my digestive system had to be rearranged and put back together. I was not expected to survive and 80% of pancreatic tumors are cancerous... mine came back benign. I was on intestinal tube feedings for four months. During those four months I almost lost my life many times. I'm 5'6" dropped down to 95lbs. I'm going to leave out pretty much everything I went through to recover because I'm just happy to still have my life. There were a few months that I started to feel human again and returned back to work, but I still had all of the above symptoms. Then in the beginning of 8/06 the nausea and vomiting became very severe and I was losing weight fast. Because I didn't have diarrhea, Crohn's never crossed anyone's mind. Then duing one of my ER visits, the doc referred me to a GI specialist. I saw him and I was thoroughly impressed! He knew I had Crohn's before the tests even came back. He ran bloodwork (and IBD Panel) and he did a colonoscopy. Low and behold, I had Crohn's. After starting on Prednisone, Pentasa, and Folic Acid, I was a whole new person!!! I started on 40mg of Pred once daily for six weeks, then 30mg for four weeks, then 20mg for one week and ended up having to go up to 25mg, which is what I'm on now. I don't like being on the Pred because of all the long-term side effects, but I really don't have much of a choice right now. I'm looking forward to my Crohn's being under control some day. I'm just happy to have a diagnosis!!! Anyway, that's my story. I'm sure you'll be hearing from me again.
Heidi