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Surgeon said I have no fistula and I should stop remicade

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Crohn's Disease
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Posted 3/27/2016 6:43 PM (GMT 0)
Saw CRS coz of rectal pain. He examined me and said that the fistula is very minimal and it requires neither remicade nor surgery. He even called my GI to tell him to stop remicade but my GI is traveling so the surgeon asked me to let my GI call the CRS when I see him. The MRI report mentions: short tiny low midline intersphincteric fistula with a 6 o'clock opening above the anal verge. However, the CRS sees it as a scar tissue from a previous anal fissure. He said I should stay on pentasa, imuran and Entocort and cope. During the past years, I couldn't cope w these meds. I was hoping that remicade would put me in remission that I've never been through yet. I feel that I'm going to go back to square 1 again and again I would be told we have suspicions of Crohn's but we are not sure. This is the least I need these days.
Posted 3/27/2016 7:07 PM (GMT 0)
Forgot to mention the CRS told me you look very healthy. I always wear make-up: eye-liner and lipstick even if I'm very sick. I dress up all the time. People think that because I take care of my outer appearance, I'm not suffering. I do this on purpose I don’t want anyone to pity me. It was very shocking to hear this from a well-known surgeon. Also, he commented that I have gained weight since he has first seen me in 2008. I'm a strongly-built tall lady. The times he has seen me was when I was losing weight drastically from Crohn's. Besides, I have been on steroids for 6 years now. I kept 7 kilograms from pred and add up to them other 3 that I have gained from entocort lately. Still, I'm not obese. He's a weird doctor and never expected a doctor to say such comments that I hear from ordinary ignorant people especially those who comment on my appearance.
Posted 3/27/2016 7:22 PM (GMT 0)
Run far, far away from this horrible surgeon. Awful weird comments aside, Remicade is not used to spot-treat fistulas. It is a very effective maintenance medication for Crohn's and if you've been on steroids for six years, you need to be on Remicade to treat the Crohn's and get you off steroids.
Posted 3/27/2016 7:23 PM (GMT 0)
Sorry minnie,
Maybe your GI will see it differently. I don't know what country you are in or how the health care system works. Does the CRS dictate care over the GI? If not, I think you can see if the GI can over-rule the surgeon and keep you on Remicade for several months, or at least long enough to see if it is helping.

As far as how you look, yeah, that is pretty ridiculous! I am one of those folks who looks better as a result of being sick for so many years. I think I've lost about 20-25 lbs since 2007. I used to be overweight, but I felt much healthier those days. Now everyone thinks I look great for 57 yrs old, but truthfully, I'd take my chubby healthy self back if I could. You just have to ignore all that stuff and not let it get to you. Your medical treatment is what is relevant.
Posted 3/27/2016 7:42 PM (GMT 0)
Bania and Gumby, thank you. I'm hoping my GI would keep me on some doses till I reach remission; I really need it. My GI's character doesn't allow others to over-rule him; on the contrary, he dictates to surgeons what to do and that what he did 3 years ago when I got a perianal abscess. The surgeon, not the aforementioned one wanted to lance it whereas my GI insisted on treating it w antibiotics for fear of continence. Hope he can over-rule this time.
Posted 3/29/2016 7:02 PM (GMT 0)
Ugh I hate when people say "but you look well"! And doctors should definitely know better.
I always spruce up my appearance when I go to the doctor because when I go in there not spruced up, I am looked at like someone who feels sorry for myself and doesn't take care of myself (yes I've been treated like that!) So I guess you just can't win there!
And that's very bizarre that he would want you to stop Remicade unless he thought you were having adverse reactions to it... It doesn't seem like your GI would agree with that considering you have been so unwell.
Posted 3/30/2016 2:02 AM (GMT 0)
My GI said if you stop Remicade it might not work again if you need it later... So would definitely think it was through
Posted 3/30/2016 11:28 AM (GMT 0)
I completely agree with Bahia! Run, run, run like the wind from that quacky surgeon! Stay on the Remicade. If you get off, you can develop antibodies and it no longer work or you could have a reaction to it if you try to restart later.
Posted 3/30/2016 5:24 PM (GMT 0)
Dear all, thank you. On a second thought, I decided not to tell my GI of the surgeon's visit. The report mentioned" short tiny" and my GI read it carefully before he decided to put me on Remicade. He mentioned then that he is putting me on Remi for two purposes: the fistula and Crohn's and he hoped that I would go into remission. So, I don't think that there is a need to cause a fuss out of it. Also, as you all said I don't want remi to stop working.
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