LIS in UK - advice please

Are you having, or have you had a Lateral Internal Sphincterotomy (LIS)? Please share your experiences here, or ask any questions.

Return to LIS - Considering surgery or already had it?



LIS in UK - advice please

Postby Worrier12345 » 20 Feb 2014, 11:09

Hi all - I would appreciate some advice - particularly from those in the UK. I tried to keep this short, but as is often the case, it went on a bit.

I am a 31 year old male, I've been having some anal bleeding issues and a small anterior skin tag for years assuming it was piles, but things got a bit more uncomfortable at the start of 2013 so I went to the GP, was informed I had a fissure and got the usual brush off with some hemorrhoid cream and fibre advice. After a few more weeks of intermittent bleeding I eventually got prescribed some GTN cream. This seemed to fix things for about 6-8 weeks, however, a week after finishing the blood returned. I pushed to see an NHS specialist, he inspected me with an anuscope and told me all he could see was scar tissue. Gave me some Diltiazem and booked me in for a colonoscopy (as I'd lost over a stone due to not eating because of fissure worries)
. Colonoscopy was all clear, but the colonoscopist ripped the fissure open. So... at my request I went back on to GTN for a double length treatment in October 2013.

Which almost brings me to now. Over the last 4 months of GTN use I had not had too much blood, there has still been some discomfort, some days better than others, as well as a general feeling of tightness. However, a few days after finishing the GTN - boom, felt the fissure rip, and I now seem to have one anterior and posterior which have been retearing every day for the last week.

Screw this, I thought: I booked myself an appointment with a CRS at the local private hospital. Before I went I had told myself that enough is enough, I wanted LIS. I've read a lot of peoples' experiences on here, decided that I didn't want the temporary solution of botox, and that LIS would fix me up nicely so that I don't have to worry about my arse any more and can enjoy life again.

It didn't quite go as I'd expected. The CRS couldn't get a good look at the fissure/s since he could only insert the scope 1cm before the pain was too much for me. He then informed me that, if it is a fissure (which it bloody well is!) the general medical consensus is to try botox next. I informed him that I'd rather skip the botox and go straight to the LIS. He told me that the LIS is not something they do very often any more and that the risks of permanent soiling and incontinence are 10%. He also said that he, personally, has only performed 1 LIS in the past 12 months, and it would be similar number for his colleagues in the colorectal department since LIS had fallen out of favour as a treatment. He said he would possibly do the procedure, but that he would have to examine me under general anesthetic to assess the situation first (which, privately, would cost about £2,000 even if he didn't carry out the surgery) - and if he didn't think the fissure/s looked chronic then he wouldn't perform the operation.

He is a well-respected senior surgeon, with over 30 years experience, in the colorectal department here at the NHS and private hospitals here, so he must know what he's talking about. However, what he is saying doesn't seem to tally with what I've read on these boards. A 10% permanent incontinence rate? That seems higher than I expected, even the NHS website says that 10% rate is temporary incontinence, and 1 in 200 for permanent incontinence. Also, it worried me that he's only done 1 LIS in the past year: I had assumed that this was a common procedure here in the UK. I also asked him what were the 30-40% of failed botox users doing to fix their fissures - were they not having LIS done? He told me that they perhaps had decided that the 10% risk of incontinence was too much and just decided to live with their fissures.

After months of trying to heal with creams, eating the right foods (fruit, fibre, veg and water!), even pooing in the advised manner (squat style and no straining!) with only temporary and partial success, I thought today was the day when I started on the road to a permanent fix with LIS. Now I just feel lost again.

I should point out: I'm not in excruciating pain like many people on here, along with the blood I have some tearing, stinging during a bowel movement, and some discomfort afterwards, some itching, and a feeling of tightness. Was the CRS right about LIS? Is the risk too great? Should I just live with these symptoms? Should I have botox, even though it doesn't seem to be very effective - considering the fact I've had 3 lots of GTN and 1 lot of Diltiazem and they only offered healing while I used them? Should I just use GTN for the rest of my life?

I've called the secretaries of a couple of other CRS who are also in the same private and NHS hospitals to see if they have had more experience recently with LIS surgery and am waiting to hear back. In the meantime, can anyone offer advice - anyone in the UK have a similar experience, NHS or private?

Sorry that took so long, I appreciate any advice you can offer. Thanks.
Worrier12345
Salt Bather
 
Posts: 88
Topics: 13
Joined: 27 Sep 2013, 10:05
Has thanked: 2 times
Been thanked: 1 time
Gender: None specified

Re: LIS in UK - advice please

Postby Savaici » 20 Feb 2014, 13:04

You might like to read this post by Davo, one of our moderators, who had LIS done privately in London. The surgeon's name is Mr. Windsor:

my-lis-diary-march-2012-fully-healed-in-4-weeks-t4589.html?hilit=Davo
:smilyhug:
Savaici
Administrator
 
Posts: 3833
Topics: 222
Joined: 03 Feb 2011, 17:00
Has thanked: 170 times
Been thanked: 257 times
Gender: Female

Re: LIS in UK - advice please

Postby Davo » 20 Feb 2014, 13:14

Hello Worrier,

If your surgeon is quoting a 10% risk of incontinence i would stay well clear! As you rightly point out the NHS state 0.5% or 1 in 200 - my CRS told me he has never had one issue of incontinence in all the years he has been performing LIS. Also i am surprised that your surgeon is only performing one LIS surgery per year, I know my CRS allocates a number of days per week to perform Botox and LIS procedures.

If the examination is too painful then you would normally be examined under anaesthetic however you may still feel a little sore afterwards.

As for GTN it ALMOST healed my fissure but it never quite 100% worked and that is why i eventually had LIS surgery.

If you are being cared for by the NHS i think you may have no other option other than Botox, if that does not work they would then offer LIS (It's all about the cheapest options first!!)

Davo
Davo
Moderator
 
Posts: 470
Topics: 42
Joined: 27 Nov 2011, 17:00
Location: London
Has thanked: 4 times
Been thanked: 30 times
Gender: None specified

Re: LIS in UK - advice please

Postby Scientist2516 » 20 Feb 2014, 15:17

It sounds as if Worrier is willing to go private, in which case surely s/he should be able to refuse botox and choose LIS. And from what I've read on this forum, that may be the right choice.

Worrier, I'm sure I don't have to tell you that even "well respected senior surgeons" don't always know what's best. He could be a stick-in-the-mud, or he may be a specialist in some other branch of colorectal practice, not fissures. If he does hardly any LISs, I would NOT use him.

It sounds as if you are in a position to shop around a bit. So find somebody who's done hundreds of LIS surgeries. I don't know how easy that is in the UK (haven't lived there for nearly 20 years). Hopefully some forumites will chime in.

Igrik (admin) had his done in London, privately. Check out his threads.
Nifedipine/lidocaine, no help
Diltiazem, effective, but caused major rash
Nitroglycerine, effective.
Topical estrogen for final healing.
Gentle heat to bottom - pain relief, muscle relaxant
Kondremul mineral oil
Time - lots of time.
Status - Healed!
User avatar
Scientist2516
Moderator
 
Posts: 1120
Topics: 16
Joined: 21 Jul 2013, 16:00
Has thanked: 157 times
Been thanked: 209 times
Gender: Female

Re: LIS in UK - advice please

Postby owmybum » 21 Feb 2014, 03:33

Sorry to hear of your negative experience with your crs.... Some really can be so stuffy and set in their ways!!
You can always get a second opinion if you are not happy.... You can ask your gp to refer you to another hospital and see a different crs, or you could just seek a private appointment yourself.
I have switched three times, once because I lost all confidence, and the second time because that particular hospital didn't offer Botox, and for me, I felt I at least needed to give that a try. I now travel to London and see DAVOs crs, mr Windsor. I have every confidence in him. I personally would not waste any more time on a surgeon who has only performed one lis in a year.... That's just crazy!

OMB x
fissure after hem banding and tag removal feb 11
Pelvic floor therapy
Diltiazem
Botox June 13
Nitro
Internal flap July 14
EUA and polyps removed Nov 14
Diagnosed with neuropathy Jan 15
Diagnosed with HS EDS type 3 (causes poor wound healing )
User avatar
owmybum
Moderator
 
Posts: 2826
Topics: 42
Joined: 16 Sep 2012, 16:00
Location: UK
Has thanked: 205 times
Been thanked: 154 times
Gender: Female
Mood: UGH !

Re: LIS in UK - advice please

Postby Worrier12345 » 21 Feb 2014, 05:46

Hi again, thank you all very much for your replies.

I have decided against going to see that particular surgeon again. Although I'm sure he knows his stuff, he just didn't make me feel happy about treatment, especially if I end up going down the LIS route.

I heard back from the other surgeons in the area and one has done 15 LIS surgeries in the past year, which seems like a healthier amount than 1. He would rather do botox first, as seems to be the norm, but has had good results with this apparently. He comes recommended by my GP as well so I think I'm going to make an appointment with him.

I'm so tired of seeing different doctors and surgeons about this. Hopefully this guy will see things through to the end, whether that's surgery or something else.

I only hope I can get in to see him soon. I'm bleeding quite a lot every day from this new posterior fissure (the anterior one seems to have sealed up for now). There's a lot of swelling down there, and I'm worried that a new tag is forming. Thankfully, the pain is still only stinging and discomfort - but even this seems to be getting worse by the day.

Fingers crossed. I wish you all luck.
Worrier12345
Salt Bather
 
Posts: 88
Topics: 13
Joined: 27 Sep 2013, 10:05
Has thanked: 2 times
Been thanked: 1 time
Gender: None specified

Re: LIS in UK - advice please

Postby dent1 » 23 Feb 2014, 08:29

Hi don't know where you are in the UK - I saw Mr Dixon in Bristol as a private patient after initially seeing him -NHS - at Frenchay.
This is from his website including his views on LIS/ botox/ advancement surgery
http://www.bristolsurgery.com/article.a ... eid=100640
I had botox/ advancement flap / 2 sentinal piles removed and laparascopic surgery for rectocele all healed and much better but also have to accept I have IBS and hypermobility syndrome and staying on movicol long term now
dent1
Salt Bather
 
Posts: 60
Topics: 4
Joined: 30 Aug 2013, 16:00
Has thanked: 0 time
Been thanked: 4 times
Gender: None specified

Re: LIS in UK - advice please

Postby Worrier12345 » 05 Mar 2014, 05:57

Hi again, thanks all for your previous replies. Just an update on my situation and any advice is welcome.

So, I finally got in to see a different surgeon yesterday. He came recommended and it seems he has a lot of experience with fissures and has done multiple LIS procedures in the last year. His secretary recommended that I should get an NHS appointment, so I had to wait to get a referral from my GP.

I got some more GTN from the GP to tide me over, and since my last post the posterior fissure seems to have healed up, but after a week free of blood, the anterior one has bled a couple of times, and the skin tag has been a bit more swollen than usual. I am still free of severe pain (other than the odd shooting pain), but there is still I general level of discomfort, soreness and tightness throughout the day.

Anyway, the surgeon seemed like a good guy and his manner gave me much more confidence in him than the last one. Despite it being an NHS appointment he didn't seem to rush and he performed the most gentle examination I've yet had - no scope, just parted the anus slightly and confirmed the anterior fissure (he said that whatever was going on at the posterior was merely "superficial").

As expected, he said that botox was the next step. He understood my concerns that it didn't have a high success rate, but that it was just the best way forward. He said chances of complications were very small, and that they would cut away some of the scar tissue during the procedure to aid healing. We talked about LIS, and he said that he does perform it, but only ever as a last resort. So I said OK, let's do the botox route, if that's the way things are done.

Then he informed me that I will have to wait until May. Which seems like an awfully long way off. I asked him about doing it privately, and he said that to do botox, and if that fails, maybe follow up with another botox, then pressure tests and then LIS would cost a small fortune. Unfortunately, I don't have a small fortune.

It is now a year exactly since I first went to my GP with this, and can only assume that since I'd had the skin tag for a few years before, that I've had a fissure for much longer. But it seems that I'm not getting very far with fixing it. What can I expect now? 2 months more of GTN, which only seems to help a little - then a round of botox in May which may or may not work, then perhaps another round of botox 3 months later (in August?) which may or may not work, then, 3 months after that some kind of "pressure tests" (November?), and if I "pass" that pressure test finally get LIS treatment (December?).

I know I'm being negative here, and that botox may fix things, but worst case scenario is that I won't get the treatment that has the best chance of healing me until the end of the year? Did any of you go down this treatment route on the NHS? Was the time-frame similar? Is there any chance that they'll do botox, once or twice, and then turn me down for the LIS? and I'll have to end up going private anyway?

Sorry to moan, but I wished I'd have pushed for botox on the NHS last October, rather than requesting I try GTN again for 4 months, which has just lead me here. I don't have the intense pain that most of the people on this board have, but this has taken over my life in the last year. I know I need to stay positive, and things could be much worse, but an end to this never seems within reach.

Thanks to any of you that have taken the time to read this, and I really do appreciate any input you have. It is much easier talking about these things here than to people I know.
Worrier12345
Salt Bather
 
Posts: 88
Topics: 13
Joined: 27 Sep 2013, 10:05
Has thanked: 2 times
Been thanked: 1 time
Gender: None specified

Re: LIS in UK - advice please

Postby PompeyBloo » 05 Mar 2014, 13:50

Hi
I think this is just the way the NHS works - try the cheaper procedures first as they do quite often work. Perhaps another way to look at is that after LIS there is nothing left. Perhaps not somewhere you want to be too quickly!
I hope so much it doesn't come to that and you succeed in healing first. Never give up. I am hoping I have managed it after more than a year of setbacks and retears.
PompeyBloo
Fibre Addict
 
Posts: 12
Joined: 03 Oct 2013, 06:24
Has thanked: 0 time
Been thanked: 1 time
Gender: None specified

Re: LIS in UK - advice please

Postby Fissurefrustration » 01 Apr 2014, 13:42

I'm in the same place as you with exactly the same problem, with my CRS and my GP saying the same!! *banging head on a brick wall* I'm getting nowhere fast :(
Suffering since June 2013 :(

Methods tried:
Sitz Baths
GTN cream - awful migraines!
Manuka Honey / Coconut oil / Aloe
Vitamin E suppositories
Tablets (Fiber, Cod liver oil with vit A+D, Multi vits)my + tag excision X 2
Dilatiazem - so far so good.
User avatar
Fissurefrustration
Moderator
 
Posts: 601
Topics: 54
Joined: 22 Mar 2014, 11:49
Has thanked: 29 times
Been thanked: 42 times
Gender: Male


  • Similar Topics
    Replies
    Views
    Last post

Return to LIS - Considering surgery or already had it?



Who is online

Users browsing this forum: No registered users and 5 guests