Im a 24 year old male and there was a fistula seen in my pouch that is 4 inches wide and leaking around my tail bone. My GI doc told me he was going to start me on remicade which I know is a heavy duty drug. The bad news that I didn't want to hear is that he said if remicade doesnt work ,50/50 chance, I'd have no choice but surgery and have a permament ileostomy. Im going to call me surgeon to see what he says about this. Has any had success with remicade healing complicated fistulas? Thanks cause I feel worried about this.
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I have no idea and have never taken remicade. 4 inches is very wide so your plan to see your or a surgeon sounds correct and I hope you do so ASAP.
I would agree with TE Marie to get that surgeon consult, sooner rather than later. Although I am not an expert on fistulas, 4 inches does seem quite large. I'm not sure specifically about remicade healing fistulas outside of any other treatment, particularly for a fistula this wide, but I would assume it is at least in part being prescribed to treat the underlying condition that caused the fistula - perhaps your GI suspects Crohns (particularly if a permanent ileo was mentioned), though if that is the case, it would be nice if that opinion could be communicated to you.
That being said, I do know that many fistulas can be surgically repaired without removal or disconnect of the pouch. Again, yours does seem quite large so the sooner you can get to the surgeon, the better. I would also suggest that you speak to your GI. If the working diagnosis is now Crohns, it is important for you and your surgeon to be aware of this as the surgical options may need to be revised accordingly.
That being said, I do know that many fistulas can be surgically repaired without removal or disconnect of the pouch. Again, yours does seem quite large so the sooner you can get to the surgeon, the better. I would also suggest that you speak to your GI. If the working diagnosis is now Crohns, it is important for you and your surgeon to be aware of this as the surgical options may need to be revised accordingly.
Thanks. I'm waiting for the call back from my surgeon to see what he thinks about all of this. I had blood work done and it showed that I do have Crohns now. I know this changes things up a bit with options on what to do.
Second and third opinions are always good when serious health problems come along. So sorry to hear about your crohn's diagnosis.
Sorry to hear that it is CD.
Definitely, your options would change, but many people with Crohns keep their pouches and do just fine. However, your large fistula does complicate matters; depending on location this may affect the pouch. All the more reason to get in to your surgeon ASAP so you understand exactly what you are dealing with and what your choices are.
With respect to the remicade, this is likely being prescribed to manage the Crohns as well. Again, I cannot comment as to whether remicade alone can heal a fistula, but chances are you may need to take it regardless for your Crohns.
Hope you can get everything sorted out, and that you can get the best possible outcome that allows you the best quality of life.
Definitely, your options would change, but many people with Crohns keep their pouches and do just fine. However, your large fistula does complicate matters; depending on location this may affect the pouch. All the more reason to get in to your surgeon ASAP so you understand exactly what you are dealing with and what your choices are.
With respect to the remicade, this is likely being prescribed to manage the Crohns as well. Again, I cannot comment as to whether remicade alone can heal a fistula, but chances are you may need to take it regardless for your Crohns.
Hope you can get everything sorted out, and that you can get the best possible outcome that allows you the best quality of life.
My surgeon gave me reassuring news. He is glad that I am starting remicade cause its the best medicine for fixing fistulas and putting crohns in remission. I was really worried about the surgery if remicade didnt work and he said exactly what you said spooky. That most people just live with their pouch and only talk about surgery when quality of life is really low. He doesnt see us talking about surgery for a long time, if at all, since this is just the beginning. Im not worried about remicade, Im going to hope for the best, ofcourse. Thank you for your sympathy and your comments. I have a good feeling about this.
Best wishes Joe 