Hi there,
I have stopped by these forums time to time but never posted. I will try to keep this brief. :shifty-t:
Dx 2005, at the time was told by MD it was "no big deal, google it." put on pentasa, and entocort as needed.
2.5 yrs ago saw new MD w increased pain, did scopes and pill endoscopy, saying crohns has not progressed but primary problem was IBS, recc go gluten free, which I have been since then with great results. At one point he said I could go off pentasa since I was feeling better.
4 mos ago, has new crippling pain/ symptoms/ joint pains/ fatigue ect. same MD said "maybe you have fibromyalgia, take some probiotics and watch everything you eat." :mad2:
Now, I am a PT assistant, I see fibro patients every day, and I sure as hell do not have that. I was so furious, made another appt with an MD my friend recc'd. Had to wait 4 months for that!
I just went to new MD 2 wks ago. She is a big whig at Brown U. She was horrified that I was not on some meds, and said my first tests in '05 were bad. (I was always told it was mild). So we did bloodwork, inflammation markers high, she ordered an MRI w contrast.
She called me with MRI results, saying she cant believe Im feeling ok based on the scan, full thickness inflammation in whole ileum, basically going to need surgery soon if I dont get on drastic meds. recc's remicade, or humira, or 6mp (preff remicade)
My concerns are everything I've read about each of these drugs. For the last 3 years, I have had abnormal paps due to HPV that wouldnt go away. (now Im thinking it was my lousy immune system/crohns impacting this) The last pap this year was finally normal, they said I was finally in the clear and wouldnt need a surgery for that. (YAY!)
Now Im faced with being told I am a fistula timebomb and need drugs that lower immune system and potentially increase cancer causing cells. Also I touch about 20 people a day. I dont need help catching anything, let alone worrying about cancer.
I am wondering if there are any other options, I went from one MD saying it was in my head, to this one saying I'm a hot mess. I dont feel that sick! I believe now I have more extraintestinal manifestations. I am so overwhelmed and feel much sicker after hearing all this. I was happy being in denial for a long time!
any thoughts about any of this are welcomed, thanks!!
I have stopped by these forums time to time but never posted. I will try to keep this brief. :shifty-t:
Dx 2005, at the time was told by MD it was "no big deal, google it." put on pentasa, and entocort as needed.
2.5 yrs ago saw new MD w increased pain, did scopes and pill endoscopy, saying crohns has not progressed but primary problem was IBS, recc go gluten free, which I have been since then with great results. At one point he said I could go off pentasa since I was feeling better.
4 mos ago, has new crippling pain/ symptoms/ joint pains/ fatigue ect. same MD said "maybe you have fibromyalgia, take some probiotics and watch everything you eat." :mad2:
Now, I am a PT assistant, I see fibro patients every day, and I sure as hell do not have that. I was so furious, made another appt with an MD my friend recc'd. Had to wait 4 months for that!
I just went to new MD 2 wks ago. She is a big whig at Brown U. She was horrified that I was not on some meds, and said my first tests in '05 were bad. (I was always told it was mild). So we did bloodwork, inflammation markers high, she ordered an MRI w contrast.
She called me with MRI results, saying she cant believe Im feeling ok based on the scan, full thickness inflammation in whole ileum, basically going to need surgery soon if I dont get on drastic meds. recc's remicade, or humira, or 6mp (preff remicade)
My concerns are everything I've read about each of these drugs. For the last 3 years, I have had abnormal paps due to HPV that wouldnt go away. (now Im thinking it was my lousy immune system/crohns impacting this) The last pap this year was finally normal, they said I was finally in the clear and wouldnt need a surgery for that. (YAY!)
Now Im faced with being told I am a fistula timebomb and need drugs that lower immune system and potentially increase cancer causing cells. Also I touch about 20 people a day. I dont need help catching anything, let alone worrying about cancer.
I am wondering if there are any other options, I went from one MD saying it was in my head, to this one saying I'm a hot mess. I dont feel that sick! I believe now I have more extraintestinal manifestations. I am so overwhelmed and feel much sicker after hearing all this. I was happy being in denial for a long time!
any thoughts about any of this are welcomed, thanks!!
