Hell, Paul, you've been through a lot. Those meds sound dreadful. Is there any alterative? Do you get a choice which one of the Crohns meds you try? Although they all sound pretty risky.
I'm not sure if my fissure ever did heal or if the retears were the same one - they were all in the same place. And this fistula was in the same place as before too.
What a palava it is to get the right diagnosis and treatment! :roll:

val wrote:Hell, Paul, you've been through a lot. Those meds sound dreadful. Is there any alterative? Do you get a choice which one of the Crohns meds you try? Although they all sound pretty risky.
I'm not sure if my fissure ever did heal or if the retears were the same one - they were all in the same place. And this fistula was in the same place as before too.
What a palava it is to get the right diagnosis and treatment! :roll:

The fistula is basically dictating the meds I am trying. The immune supressants are the main class to treat fistualizing Crohn's. I was not real excited about starting meds - debated not doing it at all. I hate putting any kind of drug in my body. I am a little bit of a health nut. But once it was found inside and since I have the fistulizing variety that made me move, since getting a fistula internally would really suck. Some people try diet to control. In my research it seems to be a mixed bag. It sounds like diet with the meds is probably the best combo.
The cancer risks scare me. But I had to put it in perspective. I have a much greater risk of getting killed in my car on the way to/from work every day for example. So hopefully the benefit will outweigh the risk.
I wonder why you got the fistula in the same place? Hopefully it is just bad luck like you mentioned. These butt issues do wear on a person that is for sure. How are you doing with your recovery? Still having to change packing? That is something my CRS never had me do when I had my first fistula layed open. It doesn't sound like fun.....

Hey Paul - I really hope the meds heal the fistula. You really are going through so much! But it sounds like you are doing every good, sensible thing to get better. I'm so glad you are working with a doctor who is very good at his job. I think your advice is very sound ... I don't want to nag you, Val, but maybe pushing your doc for a proper explanation of the second fistula would be prudent, especially since you are having such a hard time with constant fissures. It would be nice to know if there is an underlying condition that could be treated, or even rule out an underlying condition. My wonderful new surgeon is taking that approach too. He sees me as a whole person and not just a butt. I really appreciate that!
How are you doing today? I'm thinking about you and sending healing vibes your way!