Search results

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!

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.

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).

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

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!

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!

I recommend checking out Capital Digestive Care and Dr. Jessica Korman. They're great, and I have also consulted with other docs for second (and third) opinions -- medical and surgical up at University of Maryland and Hopkins.

So sorry to hear you are going through this, but I can sympathize. I am currently diverted, so things are much easier but, when I wasn't I bought big boxes of 4x4 gauze (and carried them with me to change throughout the day), in addition to wearing a pad. I had a large fistula and could actually...

I was on 80mg/week (two syringes at the same time) for a while. I started to slide backward, so I am now on Stelara (started at every 8 weeks and am now on every 4 weeks). For both increased dosages, I had the same reduced fee with their assistance programs. It did take some justification from...

Best of luck!

Glad you have a team and hopefully the current course of treatment and increased frequency of doses will help you progress. I would definitely not rule out surgery. While Crohn's patients don't have as high success rates with surgery, if you're inflammation is under control (as good surgeons...

I think it is key to tackle things with a team approach, and find a doctor and surgeon who will work together to tackle things. In my experience, biologics and immunomodulators can heal fistulas for some, but surgical intervention often is required. If you can see if you can respond to drugs...

The surgery was actually pre-planned prior to starting my business...so no correlation there! My biggest concern was actually moving from private insurance from my employer to finding my own plan and self-funding. So far, all has gone well with coverage for multiple surgeries, new drugs, etc.

Love your ambition! While I am not a tech entrepreneur, I did leave my corporate job two years ago to start my own business. A week after I left my old job I had major surgery, but I used my recovery time to get things in place to launch my business. I had some of the same concerns as you, but...

Garf - I have a temp ileo and have had it for a little over two years. I had it placed prior to a surgery to repair a fistula (which worked) but I since developed another I am trying to heal before I have a reversal. My surgery was intended to be laparascopic but they had to convert to an open...

Thanks for checking in! I am about two and a half months out from receiving the stem cells. Right now it is just a waiting game to see if I heal (fully, partially or not at all). My two-month MRI didn't show a significant change but my doctor thinks there may be some improvement based on her...

For lower abdominal I had, the contrast was via IV (perhaps you had an upper GI series, cmack?). I'll take an IV over that chalky liquid any day!

They should do contrast and, if it is for a RVF, they may also use a water-based gel vaginally to aid in the visibility/results (I have had several before but my last one was the first I had with the gel). Best of luck!

Yes, it is possible for one side of the fistula to heal but the tract be in place. It sounds like based on pain that there is active inflammation and/or infection, so that definitely should be addressed. Have you had a colonoscopy or EUA to more fully assess things? If you have Crohn's the...

I had (and still have) a temporary ileostomy for fistulizing Crohn's. Much like you, everything else is fairly well in control with biologics (now Stelara) but I have been plagued by fistulas. After trying setons, fistulotomies and a regular advancement flap, I opted for the ileostomy almost...