Misdiagnosed for 2 yrs

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HeidiZoo

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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
 
Thanks for sharing your story. Welcome to the forum here. You will get a lot of support from every one. I am glad you found out what you had and you will be good as new shortly. Some quick tips are to excercise. You don't have to do much. If you can go for a quick walk. They say that 15 minutes of excercise four times a day is sufficient for people to be healthy. If you can do pushups sit ups. When you feel healthy enough some running. I know of someone that got their Crohn's completely under control just by excercising on a regular basis.

Good luck
 
Welcome to our community Heidi!

I am glad that you are with us today and you must be a rather strong person for going through what you have. I am glad to see that your IBD is manageale. Most of us have been on Prednisone and it is good to see that it is working so well for you.

I do hope we get the opportunity to hear from you again!
 
Welcome . . . this is a great place to be and collectively we have a lot of experience and support to help you out. Welcome to the community!
 
WELCOME ABOARD HEIDI ... I am sure that you will find the awnsers that you are looking for here & I will pray for you that you will find the help that your looking for too.
 
Aloha Heidi and welcome to the forum. Everyone here has at least some symtoms and experiences in common with someone else. That's part of what makes it such a warm and cohesive group. You fit right in AND you have a great attitude. I hope you'll be back often!
 
Hi Heidi

:welcome: to the forum hope to see you around (((hugs)))
 
Hey Heidi,

Thanks for sharing your story, phew! is all I can say to it and I am glad that your CD is under control

Talk soon
 
Welcome to the crew. Don't be afraid to ask questions here... Everyone is helpful and it is a great place for support....

Nelson
 
hi i am new here to and have a similar story to yours. i was also misdiagnosed when i presented to hospital at 14 they told me that i must just have relly bad period pains and sent me home. it was not until i was 19 that anybody took any really concern in it.it was that that i couldnt eat and that i was loosing alot of weight and was unable to put it back on again.i also was put on steriods but they took no affect on me until i was on a very high dosage of them so the put me onto a drug called salozopyrin and that has controlled it quite well i actually feel normal and have cut the afternoon sleeps out completly and it is only 4 tablets a day for me.
i wish you all the best hope to hear from you soon.
 

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