- Location
- Central Texas
Really feeling bad. After dealing with this fistula for almost 2 years I went in for fistulotomy today. My CRS thought for sure it would be a safe and superficial one but when she got in there it was a bad one that would require cutting through sphincter muscle. So I woke up with another seton instead. I'm glad she knows what not to do but I had a seton for 6 months and now I'm just so sad to have one again, now probably indefinitely.
In the meantime, I went for my year check up with GI about a month ago and she informed me that she can no longer prescribe the Remicade for me b/c her billing office wont let her use the Crohn's dx anymore. I'm one of those that has all the symptoms for years, and the complications, but not a definitive test. I was on Remicade for a year and after the 3rd dose my symptoms went away almost entirely, I had my life back. That means nothing to GI doctors apparently.
My wonderful Rhuemy has since put me on Humira to see if it will help the ankylosing spondylitis symptoms, two doses so far and while it seems to be helping the gut inflammation, nothing for the joints so I may not be able to stay on it. I'm so tempted to lie but I do need something for the awful joint pain too.
What a roller coaster. Last year was the best in a long time. Remicade had tummy feeling good, low dose prednisone had my joints feeling good, and there was hope for the active fistula to heal ( there was a second one found on mri too but not active). Now I'm on the way back to misery.
Just needed to vent tonight,
Lynn
In the meantime, I went for my year check up with GI about a month ago and she informed me that she can no longer prescribe the Remicade for me b/c her billing office wont let her use the Crohn's dx anymore. I'm one of those that has all the symptoms for years, and the complications, but not a definitive test. I was on Remicade for a year and after the 3rd dose my symptoms went away almost entirely, I had my life back. That means nothing to GI doctors apparently.
My wonderful Rhuemy has since put me on Humira to see if it will help the ankylosing spondylitis symptoms, two doses so far and while it seems to be helping the gut inflammation, nothing for the joints so I may not be able to stay on it. I'm so tempted to lie but I do need something for the awful joint pain too.
What a roller coaster. Last year was the best in a long time. Remicade had tummy feeling good, low dose prednisone had my joints feeling good, and there was hope for the active fistula to heal ( there was a second one found on mri too but not active). Now I'm on the way back to misery.
Just needed to vent tonight,
Lynn