How to decide whether to have LIFT procedure?

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Kat123

Kat123

Joined
Sep 16, 2015
Messages
140
Hi there,

Does anyone have any experiences - good or bad - with LIFT procedure?

I have a transphincteric perianal fistula, with a seton since end Feb this year. Currently on Humira since March, and Aza, but to me it doesn't seem to be having much of an effect. Still have drainage, but that is pretty variable.

My CRS has suggested LIFT procedure, but I'm really reluctant to undergo surgery which might fail (I've seen anything from 30%-80% success rates in studies), and may even make things worse, e.g. damage to sphincter muscles. I know LIFT is designed to avoid that but I tend to think worst case scenarios.

I really hate the seton and the drainage, but currently I'm able to do most stuff I want - even riding my bicycle which is pretty important to me. I hate the thought of not being able to do stuff after surgery and I'm a real wuss with pain, but I'd be willing to go through it if I thought it would heal the fistula in the long run.

The trouble is I'm just not sure. Maybe I should wait longer to see if Humira has an effect, or try another drug first. Any advices welcome!

Thank you :)
 
Hi Kat, can't help you directly with your question sorry. I have a fistula but different type and I too hate it. I too also worry that surgery would make things worse and stop me doing the things that are important to me.
Hope someone comes along soon to answer your question x
 
Thank you. It's nice to connect with peole who are in a similar situation - though obviously I wish you weren't!

Family and friends are saying to go for it and have the surgery, but I'm just not sure. I haven't yet had the chance to discuss with the consultant CRS, so maybe that will help, along with the results of the scan. There's no real rush as I can just keep the seton in which will keep draining so an abscess doesn't build up. But I am studying at the moment and have a work placement all next summer, so it feels like the 4-week Christmas break is the only opportunity to have the surgery this year. I've always been rubbish at making decisions, haha x
 
But it's not an easy decision - I'm from UK too by the way. I had hysterectomy in January and my bowel perforated which has left me with many problems including fistula. I agonised over the decision as to whether to have the hysterectomy and it went wrong but that's how it is. Your consultant will know you r history and be in the best place to advise you. Can't be easy living with it - very uncomfortable I would imagine. Horrible things - hope you get some answers soon xx best wishes to you xx
 
Oh, that sounds like a horrible thing to have happened, I'm very sorry to hear that. No wonder you would worry about further surgery now. Thank you, and to you xx
 
Hi Kat!

I've been through a LIFT/advancement flap hybrid procedure prior to my diagnosis (as a recurring perianal abscess/fistula actually was the first sign of Crohns for me). My CRS gave it about 60% chance of succeeding. Needless to say it failed, probably because of me at that point being undiagnosed. It didn't leave me with any damage though.

The recovery took about three weeks for me, three weeks of waiting for the painkillers to set in and having to be constantly aware of what I ate. BMs were literally a pain in the butt - stitches up your bum is no fun when undigested food get stuck in them - sorry for being so graphic.

My CRS gave me the option to try again, but I decided to wait until I had a colonoscopy, "hoping" to get diagnosed with Crohns (that really sounds horrible), which she agreed on as the best course of action. Now I have two setons in place and starting Remi on Monday, hoping that will help the fistula heal without further surgeries. Going back to see my CRS in november,after the loading doses, and if the Remi works well for me, hopefully she will be able to remove the setons then.

If I have to go through it again, I will, albeit a bit hesitant, as it is painful!! But I would rather take the relatively short period of pain, compared to living with the setons and the constant discharge.

Have you asked your GI about being switched to Remicade, as that is supposed to work better with healing fistulas than Humira?
 
Hi Devera,

thank you for sharing your experience of the LIFT/advancement flap procedure. I'm really sorry it didn't work for you and hope that the Remicade will help.

I didn't know that Remicade was supposed to work better for healing up fistulas than Humira. I was offered either and chose Humira as it seemed more convenient to be able to inject at home instead of going into hospital for infusions, and I had read that you were less likely to develop antibodies to it, as it's fully human rather than human/mouse hybrid.

I'm not sure that the Humira is working for me at all as I'm now starting to get a bit of diarrhoea as well, and have upped my mesalazine and Aza dose as a result. But I would have thought the Humira would keep the colitis in remission if it was working.

I will ask about other drugs when I next see my GI in October. thank you.
 
If you can afford to take some time off and visit India, you may consider the treatment I underwent to completely cure me of my anal fistula. I have documented my story here.
 
I fully understand the convenience with Humira vs Remicade, and it has helped for fistulas for other people, so not a bad choice at all! Do you live far from the hospital?

As far as I know, at least here, Remicade is the only drug that has fistulizing Crohns as a separate indication. Aza will also help prevent you from developing antibodies to it. Still no guarantees though. Sorry to hear that you are getting symptoms, hope you go into remission soon!
 
@AFS - thank you. I had a look at your story. Glad that you had success and are now living fistula free :) . For me, I prefer to be treated at home in the UK, where my family is - I can't really take time off as I'm studying a degree, and healthcare here is free at the point of access. It also looks like the KS thread is a kind of cutting seton which tbh scares me even more than the thought of the LIFT procedure!

@ Devera: I hadn't even noticed that Humira didn't have fistulizing Crohns as a separate indication. I checked the UK NICE guidelines and that is the case here too, but I was definitely offered it just for the fistula. there is one study http://www.ncbi.nlm.nih.gov/pubmed/25485513 that looks at Humira for fistula in people naive to anti-TNF therapy. It found 49% response at 12 months. I'm not sure if that's lower than response rate with Infliximab? Also there were only 46 people in the study.

I don't live that far from the hospital, just over an hour's journey , but it was more the convenience of injecting at home rather than sitting in the hospital having an infusion that made me go for the Humira. they were presented to me as equal in efficacy. I might talk with GI about possibility of changing though. thanks for your advice and good wishes.
 
@Kat,

From my experience, the surgeries themselves are to be feared less than the outcome of these surgeries. A failed fistula-repair surgery (LIFT, ERAF, .. etc) does no additional harm than to leave you with no definite answer for if and when you will emerge fistula-free. When I suffered - not too long ago - from my fistula, I didn't want to go to India. I made the difficult choice to travel in search of permanent cure *only* when it became clear that I will not find a cure in USA, or finding a permanent cure has low probability.

I refused to accept the prognosis delivered to me by my renowned CRS in USA that I will have to learn to live with it while more surgeries will be attempted. I wish you success in finding a cure in the UK as that is the least disruptive, but I surmise (and worry) that medical system in UK has no greater breakthrough than in USA to cure fistula.
 
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Thanks AFS for sharing your experience, but excuse me if I find your comments somewhat negative. You seem very upset that anyone should seek any treatment other than that which ultimately helped you. I think it's great that you got your fistula successfully treated but there certainly are other treatments that can and do permanently heal fistula. Medicine is a very globalised profession, with surgeons visiting and lecturing in different countries to share experience and research, so I'm sure that any breakthroughs in treatment in India would have reached the UK, particularly given the number of Indian doctors working here.

I understand that you are eager to share your experience so that others can get successful treatment, but please consider how negative it sounds to say that you surmise I will not find a cure here in UK!
 
I was and still am, simply upset at the fact that the treatment in USA failed to help me. I am also disappointed that the two CRS I had talked to in USA have deemed it difficult to bring this treatment to USA since it requires FDA approval, a long arduous process.

Anyway, I think this will be my last post in this forum.
 
Hi AFS, completely understand what you are saying about the disappointment with the system- I frequently feel the same. We always want to get better faster than we do, but I've not given up hope yet for a solution for me :) wishing you all the best, and continued good health
 
Hi! Im not sure this will help you as I do not have Crohns, but I did have 3 fistulas and 3 setons all in at one time over a period of 2 years. I got the advancement flap procedure in July of last year and it was successful. My surgeon gave me an 80% chance of success and I was one of those 80%. Within 3 weeks he was able to tell that it had worked and I haven't had another fistula or problem since. Well, I have had irritation in that area almost daily, but no pain or anything remotely close to what I was going through before. I know with crohns the success rate is lower, but I thought Id share anyways. :)
 
Thank you Justbreathe8. It's really nice to hear from people who've had successful fistula surgery. My CRS has not suggested advancement flap at all, only LIFT, not sure why. 80% success rate sounds very high. If I were offered those kinds of odds I'd probably go for it too! They're saying 60-70% but that comes from studies which excluded Crohn's, and the only one specifically including Crohn's was 33%. I'm sure it depends on lots of factors though, like how much inflammation is controlled around the time of the surgery.

How long did it take you to recovery from the surgery? For the LIFT they've said 2 weeks. That seems a bit optimistic to me.

So pleased that you've been able to get it sorted with no ongoing problems. Well done for getting through it! :)
 
I don't remember the difference between the two procedures but I remember asking why he was doing the flap rather then the lift and there was some specific reason why the lift wouldn't work for my case but the flap would. Yes, the inflamation at surgery time definitely matters. I had the flap scheduled originally for feb 2014 and then literally 2 days before the scheduled surgery the surgeon called and told me that his mentor suggest we push it back 6 months to July so that we could be sure there was no inflamation. (Omg I think I cried all day bc I was so excited to get those setons out and waiting 6 more months seemed like forever! But I'm sure it was the right decision .
I want to say about 3 weeks or so into it I started feeling better. I have my whole story documented in the "fistula success stories" forum and it prob says for sure there. But I remember right after I thought it didn't work bc I was still in pain and still draining. But when I followed up with the surgeon he assured me I was headed in the right direction. Idk 2 weeks seems a little soon, and even after 3 I still wasn't feeling normal. I guess it prob depends on the person but maybe 3-4 weeks to start feeling semi normal again? I mean all of the swelling has to go down and when you think that's an area you use daily, it takes longer to heal.
I hope you start feeling better and find something that works for you! In the mean time, lots of sitz baths and I used (and still use) gauze between my cheeks and it helps with the irritation bc it helps keep the area cleaner.
 
Thank you! I had a read through your story. Hope I will be in the success stories section one day :) sounds like you went through a really bad time- well done for coming out the other side

I think the lift is quite different from the flap. In the lift, they go in between the two sphincter muscles and tie the fistula tract off and excise the bit in the middle. It's supposed to be good for preserving sphincter function because it doesn't touch the muscle. Then they scrape out the fistula tract, but don't lay it open.

I'm studying currently, so in terms of healing I'm thinking how long I would have to take off college. Semi normal would mean able to ride my bike again, but I'm guessing that would take a bit longer, lol. I'll see surgeon again in a few weeks so will question more then.

I use lots of gauze and/or adhesive dressing as I have quite a lot of drainage still, though it's variable. Also using cavilon barrier cream around the area. That's helped a lot as I was getting sore skin before from the drainage
 
Yeah, I think it would take a little while to be able to ride a bike again just bc you use that area. You want to make sure you have enough time to just lay down and relax to allow it to heal as much as possible. Yeah the sore skin is no fun! Im glad those things are working for you. Best of luck!!
 
Hi, I don't have Crohns but have had a transphincteric fistula for over 2 years now.
I have had;
1. Perianal abscess drain and 9 weeks packing.
2. 1st seton placement
3. Bio-plug fitted
4. 2nd Seton placement
5. LIFT procedure. (7/09/2015)

I find that crohns forums are the only place I can find any information. I felt compelled to reply to KAT123 about the surgery and recovery. I have been given six weeks off work and am on my third week. I have been very careful resting and taking things slow due to this being my fifth procedure and wanting it to work.

There is no way I could currently go back to work (I teach drama at a sixth form, highly energetic job) I am walking a bit like 'John Wayne' and some of the dissolvable stitches are still visible and working their way through. I also still have some drainage and the pain often makes me have to lie down. I definitely think you need a few weeks to recover.

I only had between 1 week and 2 and a half weeks for my other procedures and my surgeon said distinctly 6 this time and I honestly think I will need it. As for riding your bike I cannot yet sit properly and have not yet put any weight on my left bottom cheek. Hope this helps you!!! :)
 
Thanks Carly. That is helpful to know, though not terribly encouraging in terms of recovery time. I do feel like they underestimate the time needed to recover from these things. Good your surgeon was honest with you so then you can be prepared. I've not yet discussed with the consultant but the registrar told me 'a few days', and then when I pressed him 'two weeks'.

My problem is that I am doing a university degree and have a 12-weeks work placement all summer. I just don't see how I can take that much time off this year. Though it seems wrong to let college/work dictate my health decisions, I also don't want Crohn's to dictate my life.

Thank you so much for sharing, and I hope this is the procedure that works for you and you're on the mend now. Do please let us know how your recovery goes. Hopefully you'll be back to the energetic drama teaching soon enough :) all the best x
 
I know not encouraging at all is it.The problem I find is the surgeon doesn't really know about the recovery or the stages of the process. I have to work it out for myself and I can phone his PA if anything specific is happening.

I cannot believe they told you two weeks!!! I am pretty tough and resilient these days and with all the will in the world that's not going to happen!!

My tract is quite short and I have a fair few stitches internal and external but they made two incisions externally so I fail to see how two weeks is enough healing time! They have also affected a quarter of the sphincter muscle. It was very bruised and swollen the first two weeks and its painful but not terribly so if you get the pain killers right, I find using the loo and cleaning are the bits that hurt the most and take time to do.

I can imagine with your degree and work placement it is really difficult to find a time to go and have the op.

I was the same; every other procedure has been done in the holidays for me (I am lucky I get 14 weeks a year). However this procedure was cancelled originally in July and rescheduled for September. I had a long discussion with personnel and my head of dept and decided I could wait no longer. I just want the problem gone and missing the first term of the year is not ideal but as my boss said what is six weeks and you being in good health compared to the rest of your working life.

It is a total catch 22 and with you studying and having the placement I can see how tough it is to make a decision. Maybe speak to your Uni and see if there's anything they can suggest. Obviously you cannot miss your placement but they do make allowances for health reasons at Uni from what I remember.

Best of luck with meeting your surgeon and please be warned they made me have an enema prior to surgery and I wasn't warned, argh!!!

Anything else you want to ask please feel free, I keep a daily diary and photos and am not shy at all! But I get some people don't want too much information!!

Thank you, yeah fingers crossed I will be back to my crazy job soon!!! xx :)
 
Kat123! Sorry you are going through this. I agree with carly, you need to take time to recover properly. Over the last two years I have had 15 ops.
3 setons
1 lift procedure
1 plug procedure
1 bio lift procedure.
9 abscess draining.
My last op 16 /7/15 was the biolift was very painful and had to be opened up again as another abscess.
Im still suffering now and awaiting to see my surgeon next week as clearly the fistula has not healed.
Anything you wish to ask you surgeon then make a note of things and go in prepared.
These fistulas are horrible things.
Please message if you need any advice xx
 
Thanks Carly. My problem is I *do* want too much information! I'm not meeting with the consultant surgeon till 23 October unfortunately. I spoke to my uni about it today, and there's not a great deal of flexibility this year unfortunately. I have 4 weeks, maybe 5 to play with over Christmas (not that an op is playing!), and after that no possibility until after placement at the end of the summer, but that would impact on the beginning of my final year. They ultimately would be happy for me to take a year out and come back to the course; but I want to avoid that if possible.

I have to say that I'm currently leaning towards delaying the surgery in the hope that the medical treatment might have an effect. I tend to change my mind daily though, haha. I would very much like to speak with you further if you don't mind me sending you a PM?

Kelly - thank you also for sharing your experience. Sounds like you have gone through a tough couple of years as well. I'm actually starting to realise that I've gotten off fairly lightly with the fistula so far! So sorry that your latest procedure has had to be opened up again :( I've not heard of a bio lift, as opposed to a lift, but shall look it up. are you on any medical treatments as well? If so, presumably, they are not working to close up the fistula. I was so hoping the Humira would just do the trick. xx
 
An update following appt with CRS consultant today... apparently my fistula tract is too wide to do the LIFT straight away. He proposes scraping out the tract which has lots of granulation tissue, to encourage it to heal up around the seton. Then, with new increased weekly Humira, to hope that it does close up and at some point take the seton out and pray (his word).

Alternative is to later do the LIFT, which he gave 50/50 success rate in non-crohn's patients and less in crohn's. And he said 6 weeks off to recover, without any prompting from me. It was the registrar who said 2 weeks would be enough.

I think I'm going to go for the scraping out procedure, though I'm pretty scared about the pain it will cause. Feel like it's setting me back, but going to try to focus on the (hopefully) positive effects on healing.
 
Hi Kat 123
Thanks for update. I can't be of much help to you as my fistula is not the same as yours. Mine is bowel to skin and cams through my abdo wall. I how this works for you it is so difficult to deal with - how did it start with you? Am I right in thinking you don't have Crohn's? It's depressing but we have to be positive as have learned that negativity gets you no where, I'm also trying to focus on healing and not going down the bad roads. That's the biggest problem with the Internet, so many horror stories - people who have had fistula and get successfully treated don't tend to post so we only get to hear the bad stuff. I'm not in the forum too much as I find it makes me worry more sometimes. Hope we can keep in touch though - best wishes X
 
Thanks Worrywart. Yes, I have crohn's. Was initially diagnosed as UC ~ 15 years ago, but changed to crohn's after the perianal disease emerged. I'm on Humira = anti-TNFalpha therapy, which aims to reduce the inflammation and help the fistula close up.

I take your point about only seeing the bad stuff. If I ever get mine treated successfully, I promise I will post in the fistula success stories!!

Are there any plans to treat your fistula surgically? Which part of your bowel does it come from?

Thanks so much for your kind words of support xx
 
Hi Kat 123 - sorry I got your Crohn's it wrong! I had Crohn's colitis and had an ileostomy years ago, my bowel perforated during a hysterectomy. The fistula goes from my small bowwl to my skin - it didn't show on ct so is probably quite small but the hole on my abdo leaks and I have to wear dressings and change them few times a day. How do you manage yours?
Seems there are many different types of these things but we have to remind ourselves it could be worse and we will beat this one way or the other xx
 
Wow, I am struggling just to keep reading portions of this thread!
I read a little, then I go away until I sort that bit out...
then I try to digest a little more...
my life is off point.
I've been derailed!
But I am sorry to admit that this conversation is on point for me.
still tryin to figure-it-out :O


I have a hardcopy of my perianal MRI and same for my first MRE, in hand.
I do not know how to speak on any of this, let alone... all of this?!?

This conversation has been helping me, my thanks to all contributors!

I guess it is time for me to read my reports?
I am embarrassed to say that I do not really know much about my own personal nightmare fistula.
knowing more was not helping me at an earlier phase of this journey

I will weigh back in here once I read.......
the-thing-I-have-been-exerting-much-precious-energy-not-reading.
I guess I need to learn my individual specifics moving into my next phase

hugs out to all fistula sufferers,
peace
w

ps
You all seem to know specifics, and I do not...
gotta do my homework?


pss
I have emailed India twice now regarding medicated seton.
leave no stone unturned in your quest to feel better!
:D
:ybatty:
 
Hi guys,
Apologies for the late reply.

Worrywart - yeah, I have to use dressings to catch the drainage from my fistula as well. Either use non-gauze swabs (softer than gauze), or a small adhesive dressing, or both. It's such an annoyance, but as you say it could be worse.

Walt - I'm glad you have found the thread helpful. But I'm sorry if it's been kind of hard to digest some parts! I'm afraid I go quite into the detail on everything - that's just my personality - so equally I feel the need to research all the ins and outs of this. that's the way I deal with it, but it can get very stressful sometimes. If you want to talk on any of it let me know. How long have you had struggles with your fistula? Have you had any treatments for it so far?

xx
 
Hi all,
Just wanted to update that I had the scraping out (curettage) of my fistula tract last Friday, to remove some of the granulation tissue and promote healing.

I'm pleased to report that it really wasn't as bad as I'd anticipated! I've really quite minimal pain after the procedure, it's more just a bit sore around the external opening. The first day I took codeine, but after that just paracetamol and today so far I've taken nothing. Even the day after I went out in the car to the shops and I've had a couple of little walks and visits to a cafe.

The only difference I notice externally is the opening looks a bit tidier where they've taken the granulation tissue away, and they've changed the seton but it's the same kind (green thread, ethibond).

I'm so relieved that it's not made it any worse :) Keeping everything crossed that Humira might help it to close up further now.
 

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