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Recent content by DCCrohns

  1. DCCrohns

    Stelara and Neuropathy

    Thanks for the replies...and glad it resolved. I have been on Flagyl on and off over the years for longer stretches but this definitely is the longest stretch. Hoping to feel toes again soon...and not backslide with my CD.
  2. DCCrohns

    Stelara and Neuropathy

    Timely that I see this, as I am on Stelara currently (every 4 weeks), in addition to Azathioprine (150mg/day), Cipro (2x day) and Flagyl (2x day). A few weeks ago I noticed numbness in my right toe and to a lesser extent in my left. Last week it had noticeably spread to my other toes. I reached...
  3. DCCrohns

    Combination therapy: stelara & imuran?

    You can develop antibodies to Stelara (per manufacturer, <3% do). Have your Stelara levels been checked by chance? I think there may only be a lab or two that does this but it may be helpful to know how your body is metabolizing it. I think once it isn’t working, adding Imuran or another may...
  4. DCCrohns

    Anyone have experience with 80mg Humira weekly?

    I am trying to remember exactly when I switched to Humira, but at least four years (with frequency increasing over time). Stelara has been okay for me so far (I'm on it every 4 weeks)...also on Imuran and ongoing antibiotics (fistulizing Crohn's).
  5. DCCrohns

    Anyone have experience with 80mg Humira weekly?

    As an adult, I maxed out on 80mg of Humira a week. I didn't have any adverse events but I did start sliding, so I was switched to Stelara.
  6. DCCrohns

    LIFT procedure/advancement flap/Crohn's - head's a bit of a mess!

    I did not have success healing that fistula with the flap, but I currently have a (temp) ileostomy and had that done prior to a repair with a gracilis (muscle) flap. That procedure was a success (much bigger surgery though)...however, I developed a RVF subsequent to that. I am still diverted as...
  7. DCCrohns

    Combination therapy: stelara & imuran?

    I am on this mix - Stelara every 4 weeks and 150mg of Azathioprine/Imuran daily (as well as Cipro/Flagyl). My disease is primarily fistulizing and, while it hasn't resulted in healing, it has kept inflammation in check. When we added Imuran, I started at 50mg/day and we upped it over time. The...
  8. DCCrohns

    LIFT procedure/advancement flap/Crohn's - head's a bit of a mess!

    Taca - For me, I had the flap before I was diverted, but first noticed pressure/swelling accompanying the post-surgical discharge. Eventually, I had bowel contents that started to pass through (as it did through fistula before). I was diligent about hygiene, sitz baths, etc. but I knew pretty...
  9. DCCrohns

    LIFT procedure/advancement flap/Crohn's - head's a bit of a mess!

    I had an advancement flap procedure for a larger fistula but it failed, sadly. Depending on the location and size of your tract, you may want to inquire about a procedure that uses more solid tissue to fill the space, like the gracilis muscle. After more superficial treatments, I had success in...
  10. DCCrohns

    Starting azathioprine -- when do side effects or signs of intolerance typically show up?

    I'm on Stelara and Azathioprine (as well as Cipro & Flagyl), but I definitely noticed a fairly consistent fatigue with the addition of Azathioprine. I have tolerated fairly well otherwise but the fatigue is a constant battle. Wishing you well!
  11. DCCrohns

    Have You Had Martius Flap Surgery for RVF?

    I believe they may be pursuing trials for both, but I'm not sure. Rectal fistulas tend to have better success rates with intervention than RVF, I believe, and other trials have started with rectal, so hopefully for you and others.
  12. DCCrohns

    Have You Had Martius Flap Surgery for RVF?

    I actually was in this trial! Sadly, only some improvement. Weighing a new trial with direct injection of donor stem cells vs. Martius surgery right now (as we wait for trial to be approved to move forward).
  13. DCCrohns

    Have You Had Martius Flap Surgery for RVF?

    Anyone here had successful (or unsuccessful) Martius flap surgery to repair a rectovaginal fistula? If so, what was your experience -- surgery, recovery and results?
  14. DCCrohns

    Ileostomy reversal soon

    No advice, but I am hoping I can benefit from yours later. I also had a temp ileo placed a few years ago, anticipating it for six months or so. Fast forward three years and I am still not reconnected but hopefu. Best of luck!
  15. DCCrohns

    Best IBD Centre in US--Your Recommendation for Young Adults

    Having been enrolled in a clinical trial at Mayo (and traveling there six times for surgeries, visits, etc.), I can say I was very happy with my care there. My doctor recently moved from Mayo to Cleveland Clinic, which I also know has a phenomenal IBD team. Best of luck!
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