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

[MissEire]

Hello, me again, with more questions again!

So I've had a complex fistula since April 2018. Seton placement has failed, so the surgeons were recommending a LIFT procedure.

After another examination yesterday, they suggested advancement flap surgery instead, or possibly living with a Seton for life!

My colonoscopy was clear but they're now questioning if I have Crohn's anyway (i have almost every symptom bar weight loss, and have had for many years).


I don't know anything about advancement flap, so told them I'd prefer to try the LIFT procedure first because it's more sphincter preserving than the advancement flap according to my surgical team. They've also said there's a chance it may never be fixed, which left me in tears if I'm honest.



So.... What the heck do i do? They said advancement flap surgery will leave me with permanent "wetness" around the back passage, and that the LIFT "probably" won't work.


In my last appointment before this, they were confident in the LIFT procedure, until they found a lump yesterday and did a digital examination. :/


Can anyone tell me if LIFT was successful? Or a bit about advancement flap?

My head is a mess thinking about the possibility of never recovering from this.

 

[exit4]

The lump may mean you are developing an abscess. CT scan maybe needed and exam by a colorectal surgeon. I had a LIFT procedure - did not work, fistula re opened. Advance flap has a very low success rate.There are a lot of research going on. Stem cell, and the regenerative medicine will begin the next phase of medicine: Check this out:

 

[MissEire]

The lump may mean you are developing an abscess. CT scan maybe needed and exam by a colorectal surgeon. I had a LIFT procedure - did not work, fistula re opened. Advance flap has a very low success rate.There are a lot of research going on. Stem cell, and the regenerative medicine will begin the next phase of medicine: Check this out:

Thank you. They examined the lump and did a digital examination and said there's no sign of abscessing, but didnt tell me what it actually is.


I can ask my PCP for a CT scan but the waiting list for that is approximately two years (socialized healthcare).

I wasn't aware advancement flap had a low success rate? They told me it was a high success rate, higher than the 50/50 they're giving me for a LIFT procedure.


I'll check out the video but i don't think stem cell treatment is something my country will ever offer, unfortunately. We're not as advanced as America in terms of procedures.

 

[exit4]

Do you have a definite Crohns diagnosis? This procedure involves total fistulectomy, with removal of the primary and secondary tracts and complete excision of the internal opening -
poor success in patients with Crohn disease or acute infection.

 

[Cdaisydo]

Oh I’m so sorry this is happening! I honestly feel terrible for you. I can’t offer you any advice on this I’m just here to give you my support!

I know just how down and at a loss you feel, I see it and you aren’t alone!

 

[MissEire]

Do you have a definite Crohns diagnosis? This procedure involves total fistulectomy, with removal of the primary and secondary tracts and complete excision of the internal opening -
poor success in patients with Crohn disease or acute infection.

No solid diagnosis, no. My colonoscopy was clear a year ago (bar biopsies, they lost those results), they're saying i "likely" have it, because i have all the symptoms, but they're not pushing for more tests (bloods, fecal calproctin) until after surgery.

I wasn't aware the advancement flap involved a fistulectomy, yikes!

I'm glad i opted for the LIFT instead

 

[MissEire]

Oh I’m so sorry this is happening! I honestly feel terrible for you. I can’t offer you any advice on this I’m just here to give you my support!

I know just how down and at a loss you feel, I see it and you aren’t alone! ❤

Thank you so much! That's really thoughtful of you, seriously, thank you I hope you're getting better now!

 

[DCCrohns]

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 closing my fistula with a gracilis flap. It is more invasive (as they detach muscle from your upper leg and re-route it), but it is a more solid barrier.

The key for any surgery is to ensure you don't have any active inflammation, as that will greatly inhibit your chances of success (and success rates for fistula repair aren't that great to begin with). Many surgeries will recommend or require that you have a temporary diversion (I have a loop ileostomy) to allow your system to rest and heal.

On the topic of stem cells, I later developed a RVF after the successful closure of the aforementioned fistula, and I did participate in a trial using stem cells. Sadly, it did not heal the fistula, but I am planning to enroll in a forthcoming trial with a modified approach (donor vs. your own stem cells, different administration) before pursuing a more invasive surgery.

Fistulas are the worst. Period. Take your time to research and ask questions and think through what other options you would have if one approach fails and whether you prefer to step up to more aggressive approaches (or keep things stable and wait for new treatments), if needed, or take more aggressive steps sooner.

Wishing you luck!

 

[Taca]

Hello,
I am reading your stories and I am very sorry that this is happening to you. I have been suffering from complex fistula for about a year. After 7 months of Seton, 19.11. I had surgery, advancement flap. My surgeon told me it was an operation with more success than LIFT.

I am currently recovering, and surgery was not painful for me. But I'm losing hope that the surgery was successful, because I still have a yellow discharge, much less than before the surgery, but it's still there.

If you have any questions about surgery, ask me?

DCCrons how did you know your surgery failed, what are the signs?

 

[DCCrohns]

Hello,
I am reading your stories and I am very sorry that this is happening to you. I have been suffering from complex fistula for about a year. After 7 months of Seton, 19.11. I had surgery, advancement flap. My surgeon told me it was an operation with more success than LIFT.

I am currently recovering, and surgery was not painful for me. But I'm losing hope that the surgery was successful, because I still have a yellow discharge, much less than before the surgery, but it's still there.

If you have any questions about surgery, ask me?

DCCrons how did you know your surgery failed, what are the signs?

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 early on I didn't have confidence in it healing. My CRS at the time cautioned that there could still be secondary healing but that didn't happen. While it's a big step, depending on the severity of your tract, I would discuss if a temporary ileostomy would be recommended/greatly increase your chance of success. Best of luck!

 

[Taca]

DCCrohns- thanks for the reply, i'm sorry for your experience. Are you free from fistula now?
Next Monday I'm going to see my surgeon. I'm very worried about fistula drainage and I'm afraid my surgery has failed.

 

[DCCrohns]

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 I try to get that to heal (currently pursuing stem cell therapies before a more traditional flap surgery).

I hope you get good news from your surgeon but, if not, just take it a day at a time and keep your eyes toward plan Bs and Cs.

 

[Taca]

Hi,

I had my first follow-up appointment on Monday, and i saw a consultant. He told me everything looks ok and drainage is normal for few weeks. My next appointment is in January, and he expects drainage to stop if surgery is successful.

He told me they did LIFT, not FLAP as I expected. I don't know why the surgeon changed his mind while I was under anesthesia and no one explained it to me. I was a little shocked by that knowledge.

 

[MissEire]

Hi guys, thanks so much for the replies!


So far, we're going ahead with a LIFT. it should be in the next month or two. No active inflammation at the moment so fingers crossed.


I'm going to ask about that flap procedure with the muscle grafted from the leg if this doesn't work. I don't mind scars or more invasive surgery if if works tbh.

Aside from that, they haven't mentioned a temp ileostomy yet, so I'm hoping that won't be necessary, as I'm JUST starting a relationship and don't want to explain that, LOL.


Unfortunately, i think i may have another abscess, right next to my Seton. Most doctors are closed now for Christmas but im going to try find one that's open to see if they'll give me antibiotics.