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02-25-2017, 02:19 PM   #1
sulimir
 
Join Date: Feb 2017
Location: Boston, Massachusetts
Hello

Hello, i was diagnosed with Crohn's two years ago. however, I have had abdominal symptoms for years. Two years ago I got uvetis (inflammation in both eyes) and it went from there. They told me I have gene HLA-B27 which is associated with many inflammatory diseases. At first my Crohns was mild. I got prescription for Mesalamine. I took it for two weeks and felt great. After two weeks I started having really bad side effects (I felt like I have the worst flu in the world, then it turned to my chest, I could not breath it felt like I have heart attack). I stopped taking mesalamine and did nothing. In April of 2016, I had flare up, got prescription for Lialda, reaction started after twp doses. I stopped it and I have listed allergy to mesalamine. I had colonoscopy done and my GI said to me that my disease progressed so fast that she is afraid I might have cancer. My colon was covered with ulcers. She gave me Budesonide, which helped and started me on Humira in April 2016. I was terrified of Humira but took it. I was ok until October of 2016. I went to bed feeling good and woke up being not able to get up and swallow. Went to see MD, gave me Antibiotics felt better for after two days. NExt I ended up in ER with heart attack like symptoms (all cardiac tests were normal). I stopped taking Humira. I was so scared of getting infection or cancer that my anxiety was taking over me. For three months I was ok. By the way all this time I was on SCD. In February of this year I had the worst flare up ever. MY GI did CT scan and there was inflammation in distal ileum (6cm), my colon was not inflamed. I am back on Budesonide. And my GI is starting me back on Humira. I am scared and disappointed. I am sacrificing with my diet so much and still its not working. I feel like I felt better eating regular (healthy) food. I changed my job which was highly stressful, I relaxed and try not to be anxious to much. That's my story. I am single mom and want to have happy, long life with my daughter. I would like to get second opinion. I feel like my GI is very fixated on biologics. She supports SCD but is not to crazy about it. She does not know about LDN and when I asked to test my stool for bacterial flora etc. she said that is not necessary and that there are no such tests. Which is no true. I am in Boston area. I am looking for GI who is open minded to new treatments and is not afraid to experiment. Please, help.
02-25-2017, 03:42 PM   #2
ronroush7
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Join Date: Oct 2013
Location: vienna, Virginia

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Welcome. I think a second opinion might be good. Have you started back on Humira again? I would ask if there is the possibility that you could have built up antibodies to the Humira in the meantime. You mentioned gut flora. Have you tried probiotics to balance the good bacteria with the bad?
02-25-2017, 05:05 PM   #3
cmack
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Join Date: Aug 2014
Location: British Columbia

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Hi sulimir,

Welcome to the forum. I don't have many answers but I offer you my support. Explore this site, you may find others who know about this. I think a second or even third opinion is in order. You may need to check the doctor directory in this forum. I feel for you.

Welcome again, you can talk to me any time, if even just for moral support.


Best wishes,

cmack
02-25-2017, 06:26 PM   #4
sulimir
 
Join Date: Feb 2017
Location: Boston, Massachusetts
Welcome. I think a second opinion might be good. Have you started back on Humira again? I would ask if there is the possibility that you could have built up antibodies to the Humira in the meantime. You mentioned gut flora. Have you tried probiotics to balance the good bacteria with the bad?
Thank you for your response.
Im waiting for insurance authorization for Humira. I was off it for 3 months. My gi said I should be ok. I have been on SCD but I don't think it's working. I have probiotics but take it once on a while because it's to strong for me, I have cramps and gas from it. I'm very confused and don't know what to do anymore.
02-25-2017, 06:27 PM   #5
sulimir
 
Join Date: Feb 2017
Location: Boston, Massachusetts
Hi sulimir,

Welcome to the forum. I don't have many answers but I offer you my support. Explore this site, you may find others who know about this. I think a second or even third opinion is in order. You may need to check the doctor directory in this forum. I feel for you.

Welcome again, you can talk to me any time, if even just for moral support.


Best wishes,

cmack
Thank you!
02-25-2017, 06:29 PM   #6
ronroush7
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You also mentioned LDN. I believe there is a section in here where they talk about it.

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