Haven't had a LIFT but have had many fistula repair procedures, including two gracilis flap repairs. I have always been told that they judge success ultimately around six months but that healing can...
Best of luck and a speedy recovery! Also anxious to hear about your experiences, if you are open to sharing. Have had a loop ileo for 6 years hoping for reversal but it's looking more likely...
I think the doctor doing the most work in this space is Dr. Mahadevan, through the PIANO study and the like: https://gastroenterology.ucsf.edu/piano. I'd do some digging around the results they've...
And my GI usually gets back to me same day through patient portal. She also has given me her direct email...same goes for my colorectal surgeon. Not to generalize, but I have found younger doctors...
I'd also recommend understanding what other medical staff and office support there is. My GI is great, super responsive, keeps on top of new research, etc. but I also have orked a lot with the PA...
After developing a reaction to Remicade and a brief stint on Cimzia, I was on Humira for a few years -- increasing my dose like you gradually (was up to two syringes a week). My GI doc checked my...
Also developed issues with Remicade years ago and have fistulizing Crohn's. After trying a two others (Cimzia, Humira), I landed on Stelara and am still on it. I take it every 4 weeks (have since the...
Had two doses of Moderna (second was in early April) and have since had booster. First dose, felt tired and had a headache that grew the first day but took some Tylenol at night and woke up fine....
I'm on 1.25MG/50,000 of D2 every week, in addition to my other meds (Stelara/Azathioprine/Doxycycline). My D levels have always been a bit low (along with B12, which I do a monthly injection of at...
I was just discussing this with my GI doc. I have had to switch biologics several times after not responding or, for Remicade, developing a reaction. I have been on Imuran with Stelara for years but...
I moved forward with my GI appointment today in person (was her only in-person case, rest was telehealth). We communicated before about changes and what we needed to discuss and agreed IRL was...
You are more susceptible to catch any virus, including COVID-19. I haven't heard anything about duration, but a group of GI docs are trying to try track confirmed COVID cases that involve...
RVF sufferer here. I had recto-vaginal fistulas prior to and only developed an RVF after a successful (finally!) surgery to heal a larger fistula. RVFs are notoriously hard to deal with, although I...
It's been a few years since I had the procedure (eventually had success with gracilis flap procedure), but you'll want lots of gauze (try to find larger squares that aren't too rough). I live in the...
Thanks, UB. I had partial improvement (mostly based on evaluation under EUA and MRI vs. my symptoms), but I may try again in an upcoming trial with donor cells (which may prove more effective) and...
Having had stem cell treatment for a fistula (RVF) as a part of a phase I trial in the U.S., I think there is great potential here. They are still learning a lot about optimal treatment/donor types...
Anyone here had successful (or unsuccessful) Martius flap surgery to repair a rectovaginal fistula? If so, what was your experience -- surgery, recovery and results? TIA!...
I am in a trial and received stem cell therapy (via a plug) for a fistula. It is a phase I trial at Mayo, but more are coming in the U.S. I had some improvement but not complete healing; however,...
+1 to what ASellers said. I have a similar type of disease (have a temp ileo going on three years), but I have had surgeons that have said the option you present is inevitable, as well as those...
So sorry you are going through this (and sympathize as a long-time fistula sufferer). It sounds like a RVF to me and an EUA would be the most definitive way of diagnosing and understanding the extent...
I have a temp ileostomy that was put in place prior to my gracilis procedure. While I still hope to have it reversed, I do know that it can greatly improve the changes of success with many procedures...
Currently dealing with a RVF here (which developed after I had a gracilis flap surgery to heal another...which worked). After meeting with lots of surgeons and moving to new drugs, I decided to...
I would definitely keep checking in. It is likely the first trial with the plug has not worked for me (but likely has improved things). They are working on at least one new trial that involves donor...
I am currently on Stelara and Azathioprine (previously was on Remicade, then Cimzia and then Humira). I was just talking with my doctor about what new drug therapies may be on the horizon. Sadly,...
When my flap failed, I had pain (was more external than internal) and increased discharge (more of the clear to slightly cloud tinged with blood type). I would definitely check with your doc and...
Octobergirl - Fellow Crohnie here with fistulas as my main symptom. I have tried both medical and surgical interventions, and my opinion (and that of many of the doctors I have consulted with...and...
I have had an advancement flap (and have Crohn's) and, it did not take for me. I had a rather large fistula that passed material regularly with BMs and previous setons and other procedures (in...
Thanks for checking in! It's a waiting game now, but I head back up there tomorrow morning for MRI and such. Fingers crossed. Exciting to hear that you may be a candidate...fingers crossed for you,...
My doc added Azathioprine (worked up to 150mg/day) to my Stelara. I'm currently on every 8 weeks for Stelara but that may get bumped up to every 4 weeks. Hard to judge effectiveness with my case...
I noticed more hair loss when I switched to Stelara and added Imuran (happened close to each other, so hard to pinpoint if it was one or both). I added biotin to my supplements and that has helped a...
Ah, who are you seeing at Mayo? I head back there tomorrow for my next post-op check-in. On the stoma (assuming they are talking temporary ileostomy), it is a big decision and mentally challenging....
On the options, I would add that plugs can also be of other medical material that are meant to stay in your body. Plugs, generally, are not very effective, but the new research pairing with stem...
After years of trouble with anal fistulas and, ultimately, a temp ileostomy and gracilis muscle flap to heal that one, I developed a RVF. Most options are surgical (I have been on a series of drugs,...
Remicade does have a good track record (sadly I developed an allergy over time). Best of luck, Chitown!...
Happy to help how I can. Link provided by xy123 gives some background. I actually just returned a few hours ago from my second trip to Mayo for my stem cell plug placement (earlier this week) for a...
So sorry to hear you are in pain...I have been there. I have had several procedures and surgeries, including a standard advancement flap and later a flap using gracilis muscle. The first, sadly,...
Stelara seems to be going well (switched in the fall of last year), which was around the time that I also started azathioprine/Imuran. I did notice as we upped that dose that fatigue can be an issue...
In the Mayo trials, they take a fat biopsy from your abdomen or thigh (mine was from abdomen) to collect the tissue needed to grow the autologous mesenchymal stromal cells (MSC). I was under general...
Thanks for checking in. I got back on Saturday from my first trip to Mayo and I am optimistic. I hadn't met the team yet in person and they had only reviewed my history, MRIs, etc. so I wasn't a full...
I had standard advancement flap procedure (after all sorts of other surgeries, setons, etc.) and the more complicated gracilis flap surgery later (which worked!), and I think the best advice is to be...
Was it a cutting seton? I know those aren't very effective historically and have risks for muscle function. A draining seton could be uncomfortable but shouldn't be so much that it causes constant...
I know the plan for this study/me is for a seton prior to the stem cell-infused plug. I now one of the pre-requisites is having the area as calm/non-inflamed as possible, as well is infection free....
Sorry to hear that, Dave123. This trial is targeted at the fistula with a plug infused with millions of stem cells...trying to prompt healing at the site. This...
An increased risk has not come up in any of my consults with various doctors and surgeons...but I suppose that's something that happens with a variety of treatments we pursue, such as biologics....
I know it's a long-shot, but has anyone participated in a trial to treat their fistula(s) using mesenchymal stem cells (i.e., those harvested from you)? I've tried it all and am about to start a...
I had a good amount of hair loss (have been on various mixes of biologics and Imuran), but I also found biotin supplements (Nature's Bounty Hair, Skin & Nails Gummis) to help....
I am a new convert to Stelara myself (had my induction dose about three weeks ago), after having developed an allergy to Remicade, not doing great on Cimzia and ultimately stopping seeing results...
I dealt with a similar situation, with a larger fistula that would pass stool (and often had particles get stuck in it). Sadly, my first advancement flap surgery failed (I knew fairly early on but we...
For bag changes, eat 4-6 marshmallows about 30-45 minutes before you want to change your bag (I usually do in the morning). The marshmallows slow things down so you (usually) don't have to deal with...
I had my ileo a little over a year ago, and I was in the hospital for four days. Sadly, my planned laparascopic surgery was converted to open, so i ended up with more inches of incision than...