D My name is Amber and I am suffering with Crohn's. I have had abdominal pain on and off for the past 5 years that was originally diagnosed as an ovarian cyst. About 2years ago it started getting worse so my PCP referred me to an OB/GYN who said I had endometriosis. In the mean time, my pain went from only a couple of days a month to where I hurt every day, except maybe a couple of days.
In January 2013 I told my GYN that I figured out that I hurt when I eat. He proceeded to tell me that I have endometriosis on my colon and there was nothing they could do for me. They refused to help stop my pain, putting in my chart that I was just drug seeking, not caring that from January to March I lost 15 pounds. And I was severely underweight to begin with.
I finally got another appointment with my PCP to see if I can get any help. She tries to help my "endometriosis" and gets me a referral to a gastroenterologist because of my diarrhea and to see if I can get a colonoscopy to make sure nothing else is going on. I finally saw him on 7/31/13. After going through my issues and symptoms he said that he doesn't believe I have endometriosis but Crohn's or some type of IBD. He orders blood tests, a colonoscopy, an endoscopy and a CT scan with contrast. The only thing that showed up in all the testing was something in my blood work. He said it shows up almost exclusively with Crohn's.
Well, the colonoscopy and endoscopy showed mild erosive gastritis. He tells me he's 70% sure I have Crohn's but that I need to have a capsule endoscopy to confirm. Meanwhile, I can't eat without hurting, I went from 125 pounds in January 2013 to 102 in November. I am 5'7, so this is way too low. Even when I do eat, it just comes right back out. This doctor told me in October it would be about 2 weeks before I would get that test done, and I have yet to hear from them. By the way, I am on Medicaid, so it is hard to get things done.
My PCP put me on prednisone right before Thanksgiving for another issue, and it worked. I had 0 pain until I dropped below 30 mgs daily. When I followed up with her and told her, she put me on 30 mgs daily. This has been 3 weeks, but it hasn't worked since November. She is trying to help me, but I am feeling so alone and discouraged. I know it might take a different medication, but I just can't get away from the pain. At least the prednisone helped me gain about 10 pounds, but my pain is ridiculous.
I have a 4 year old son who will literally cry because it hurts him to see me in pain. I have many days where I can do nothing except lay in bed, practically crying because of how intense and cronic the pain is. I just feel like no doctor wants to help (except my PCP who can only do so much to begin with) and nobody I know understands what I am going through. I have people tell me I just need to eat, because I look bad with the weight loss, but they don't understand that when I do eat I literally feel like I have a knife shredding me spat inside. I also suffer from depression, so that doesn't help anything when trying to deal with all of this. I suppose I really just need to hear from or talk to people who actually know how this feels first-hand. I am sorry this was so long, but it has been a long ordeal with horrible doctors and misdiagnosis. Thank you for taking the time to read my sad story. :ybatty:
In January 2013 I told my GYN that I figured out that I hurt when I eat. He proceeded to tell me that I have endometriosis on my colon and there was nothing they could do for me. They refused to help stop my pain, putting in my chart that I was just drug seeking, not caring that from January to March I lost 15 pounds. And I was severely underweight to begin with.
I finally got another appointment with my PCP to see if I can get any help. She tries to help my "endometriosis" and gets me a referral to a gastroenterologist because of my diarrhea and to see if I can get a colonoscopy to make sure nothing else is going on. I finally saw him on 7/31/13. After going through my issues and symptoms he said that he doesn't believe I have endometriosis but Crohn's or some type of IBD. He orders blood tests, a colonoscopy, an endoscopy and a CT scan with contrast. The only thing that showed up in all the testing was something in my blood work. He said it shows up almost exclusively with Crohn's.
Well, the colonoscopy and endoscopy showed mild erosive gastritis. He tells me he's 70% sure I have Crohn's but that I need to have a capsule endoscopy to confirm. Meanwhile, I can't eat without hurting, I went from 125 pounds in January 2013 to 102 in November. I am 5'7, so this is way too low. Even when I do eat, it just comes right back out. This doctor told me in October it would be about 2 weeks before I would get that test done, and I have yet to hear from them. By the way, I am on Medicaid, so it is hard to get things done.
My PCP put me on prednisone right before Thanksgiving for another issue, and it worked. I had 0 pain until I dropped below 30 mgs daily. When I followed up with her and told her, she put me on 30 mgs daily. This has been 3 weeks, but it hasn't worked since November. She is trying to help me, but I am feeling so alone and discouraged. I know it might take a different medication, but I just can't get away from the pain. At least the prednisone helped me gain about 10 pounds, but my pain is ridiculous.
I have a 4 year old son who will literally cry because it hurts him to see me in pain. I have many days where I can do nothing except lay in bed, practically crying because of how intense and cronic the pain is. I just feel like no doctor wants to help (except my PCP who can only do so much to begin with) and nobody I know understands what I am going through. I have people tell me I just need to eat, because I look bad with the weight loss, but they don't understand that when I do eat I literally feel like I have a knife shredding me spat inside. I also suffer from depression, so that doesn't help anything when trying to deal with all of this. I suppose I really just need to hear from or talk to people who actually know how this feels first-hand. I am sorry this was so long, but it has been a long ordeal with horrible doctors and misdiagnosis. Thank you for taking the time to read my sad story. :ybatty:
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