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INACTIVE Crohn's

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ddg526

I have had a history of bowel obstructions for about 30 years! Recently I was told by results of CT scan that I had inflammation once in large intestine and now it's in small intestine. Further I was told to see a gastro dr specialist which I did. He ordered an MRentrology and a Prometheus blood test. Yesterday they called and said Prometheus indicates inactive Crohn's. They are recommending what I believe to be overkill on drug treatment which includes one of the following Humara, Remicide, or cimzia AND Methrotrexate. I asked what they would treat with if/when it became active and they said same thing/same dose! I have never had symptoms of Crohn's, i.e. horrible cramping, diarreha lasting for week(s) or bloody stools. Only thing is my bowels obstructions which they indicated that my last one was not due to Crohn's. I am so very stressed to agree to this drug treatment regiment due to many side effects without having active crohn's and standard symptoms! Am thinking about second opinion regarding treatment plan. Also concerned if I refuse recommended treatment, should my crohn's become active dr. will refuse to treat me. I plan to request appmt to discuss many questions and reservations before making any decisions. Any advice would be appreciated!:sign0085:
 
ronroush7

ronroush7

There might be damage going on in your body if you don't take these drugs and they are just trying to keep that from happening. Keep us updated.
 
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ddg526

Thank you ronroush7! I will be scheduling a follow up "interview" with GI people with all my concerns. She caught me off guard yesterday with phone call, diagnosis and treatment plan even though it's inactive. I will most likely get a second opinion perhaps at Mayo!
 
JaimeM

JaimeM

I will say this.. I loved going to mayo. They are the #1 IBD treatment center in the US. So I don't think your dr could be upset about wanting to see what their opinion was.. After going to mayo I finally felt like we had a real plan in place for my treatment. I was very satisfied with my treatment there. They worked really well with my GI back home also. The Mayo drs know a lot of the new treatments out there and what would be best for your case of crohns.
 
Eridon2002

Eridon2002

Definitely get a second opinion. Mayo is a great place for that, I got a second opinion from them regarding resection surgery. If you have inflammation then you likely have active Crohn's. The Promethus blood test isn't accurate for diagnosis active or remission(which Promethus test was it? What markers was it testing for?. Also, there are Crohn's patients that are asymptomatic yet their Crohn's is still active and causing inflammation which damages their intestines. Write up a list of questions to ask the Mayo GI doctors, the one I got was very thorough at answering mine.
 
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ddg526

Eridon2002 said:
Definitely get a second opinion. Mayo is a great place for that, I got a second opinion from them regarding resection surgery. If you have inflammation then you likely have active Crohn's. The Promethus blood test isn't accurate for diagnosis active or remission(which Promethus test was it? What markers was it testing for?. Also, there are Crohn's patients that are asymptomatic yet their Crohn's is still active and causing inflammation which damages their intestines. Write up a list of questions to ask the Mayo GI doctors, the one I got was very thorough at answering mine.
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Thanks Eridon2002; unfortunately I have no idea which Prometheus test it was! I can find out. I'll add it to my list of questions for my GI doctor's PA. Definitely want to know b/4 I'd request Mayo appmt.
 
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