Problems with my LIS

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Problems with my LIS

Postby Worrier12345 » 21 Nov 2014, 11:48

Hi all,

Sorry that I've been posting so much on this board recently but I'm having some real issues since my LIS 12 days ago. If any of you could offer some advice I'd really appreciate it.

I would have said that my LIS has been a success with little bleeding, no pain and easy BMs, if it weren't for that fact that I seem to leak solid stool now.

To explain my problem: my surgery was to heal an anterior fissure. My anus now seems a little swollen everywhere EXCEPT where I presume the incision site is. Imagine a clockface (12 is anterior, 6 is posterior), in three quarters - 12-3, 3-6, 6-9, there is what looks like normal, if slightly swollen anal cushions. However, at 9-12, which is where I'm guessing the incision was, there doesn't seem to be an anal cushion, rather, it is indented. After defecating, and throughout the day, this indent fills with stool. The more I clean it out, the more stool appears.

My follow up with my surgeon is not for 3 months. After contacting his secretary they have told me that I just need to wait and see what happens. I have just been to see my GP and he could see the problem, saying that there was definitely a gap which was filled with stool. He is going to get in contact with the surgeon to see if he can see me earlier.

In the meantime I am going insane. Could someone please offer me any insight.

I cannot really see any "incision wound" - is this where the indent seems to be? Is there any chance that this will fill in as it heals, so that my anus forms a seal properly again?

Does it sound like I have a problem known as a "keyhole defect", where a gutter forms in the anal canal that allows stool to seep out? Or does it sound like the surgeon cut too much of my muscle.

I know it's difficult for any of you to offer advice to me in this situation, but from going through all the posts I can't find anyone that had a similar experience post-op.

What I really want to know is - am I one of the unlucky 2% who will have permanent problems, or is this likely to resolve over the coming weeks/months.

Please help - any advice would be kindly appreciated.

Thanks,
Worrier
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Re: Problems with my LIS

Postby msimon » 21 Nov 2014, 14:50

Hi Worrier. I too am very worried about how things are going down below for me. From a fellow sufferer I want to encourage you to be patient and wait a couple more weeks to see how things are going to settle. My CRS seemed to indicated that most 'incontinence' issues post-surgery are due to swelling. When that subsides things become normal again. Also, your sphincter should regain strength again, usually the most between 3-6 months post-op so that may help if you do indeed have an incontinence problem. I think I have a dip where the LIS incision is too and tremendous swelling on each side of it and am wondering if it is the sutures holding things this way. I can't seem them or the incision on account of all the swelling.
Dec '13 Fissure from anoscope
3 X internal sphincter botox
'08-'15 Botox for pelvic floor dysfunction
Nov '14 LIS/sentinel tag removal
Feb '15 Deroofing of recurrent infection from LIS
summer '15-healed but still ongoing muscle dysfunction/pain
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Re: Problems with my LIS

Postby Worrier12345 » 21 Nov 2014, 15:33

Thank you for your kind reply msimon. I'm sorry to hear about your problems - I hope that you get some relief soon and your recovery improves.

I really hope you're right about my situationt, although I can't help fearing the worst. My swelling has gone down significantly in the last week so I'm not sure that is having any effect. I feel like my only hope is the muscle regaining strength - but whether it will be enough to stop stool leaking out is another matter.

I'm honestly crushed by this whole thing. I wish I had never pushed for surgery in the first place. I wasn't in that much pain at all - I'd rather have lived with a bit of bleeding and some difficult bowel movements than this constant leakage. What a mess I have made.

I have no choice but to wait and see now, as I cannot see my surgeon until he says so - which could be weeks yet.
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Re: Problems with my LIS

Postby Rachael 1984 » 09 Dec 2014, 06:28

Hi worrier,
How are you?
I've replied to you in my diary. Where are you in the UK? I've never heard of the fact that they don't like doing LIS on the NHS. Who told you that? Your surgeon? The wait times are ridiculous aren't they?........ I'm going to have another Xmas in misery. Ugh.

I do hope that can help you further... If not maybe seek another opinion?. Xxxxxxxxxx
Hem Banding sept 2012
2Fissures
Nitro- Effective short term
April 2013-Botox-Effective short term
Diltazem-No effect, developed Rash
July 2014-Diagnosed High Resting Pressure
LIS performed on 17.9.14
Ongoing pain/re-tears. Awaiting pressure test results.
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Re: Problems with my LIS

Postby Worrier12345 » 09 Dec 2014, 08:01

Hi Rachael,

Thanks for replying.

I'm not really sure how I'm doing to be honest - I seem to be in a difficult situation, and without the input of my surgeon (who I won't see until the beginning of January) I'm not sure what the best course of action is.

Currently, I am sure that the LIS has made a difference, in that I can now pass a decent size stool and it doesn't feel like I'm trying to squeeze a football through a hosepipe. However, I am still experience stool leakage throughout the day - I am still unsure whether this has to do with the incision site - where I can clearly see stool collects/leaks - or whether it is to do with the haemorrhoids that have been present since the surgery. A month on and it is still a bit of a mess down there with purple swellings and new folds that weren't there before LIS.

I have noticed that if I keep my stool dry then I have less leakage, therefore less irritation and itching. However, dry stools tend to be large and this seem to irritate the hems. This has caused something of a problem - and it seems whatever I do it causes irritation in some way.

I was hoping that the surgery would mean I wouldn't have to worry about my arse any more, but now I seem to be worrying about it even more, what with monitoring my food/water intake, endless cleaning after a BM and throughout the day. I wonder if it will ever end.

As to the advice I got from the surgeons: I spoke to 2 surgeons, both NHS, one said that hardly anyone in his colorectal dept did LIS any more, he said they do creams and botox. I pushed him on this, saying that botox and creams only work in 50% of cases, so what do the other 50% of people do? He said "they live with it instead of risking incontinence". I found this to be completely contrary to information on this site and elsewhere.

I researched other surgeons in the area and found the one who ended up treating me. Despite what the previous surgeon told me (they are in the same hospital), this one had done 15 LIS in the past year - but he still told me that they dont do many, that we would have to try botox first, and LIS is last resort. So I did as he said, tried more GTN then botox - neither worked for long. Now I've had LIS, I do regret it, I think perhaps I should have either found a surgeon who was less reluctant to do the surgery or just lived with it - which was probably possible since my fissure never caused huge amounts of pain. Now I don't really know where I stand - I don't think the fissure has healed, I may or may not be facing lifelong stool leakage, and I also have piles which don't seem to be subsiding. I know it's only been a month - but I was really hoping that I'd be seeing a light at the end of the tunnel by now.

I hope you are feeling OK anyway, and I am sure that you will make the right choice regarding a second surgery. I would definitely recommend getting the opinions of other surgeons and doing any tests that they may offer. You can't go back once you have surgery done after all.

Good luck, and thanks again for your reply,
Worrier
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Re: Problems with my LIS

Postby Rachael 1984 » 09 Dec 2014, 08:30

Hi Worrier.
I'm so sorry you are in this situation. It's just not fair. Hoping surgery would be the end, and it's just caused more problems.
Did you have a pressure test before having the LIS? I did and my pressure was high, which now my CRS suspects it still is and his cut was too conservative. When I had a re-tear I hit rock bottom again a few weeks ago, and now I'm pretty much back to how I was.... Watching Diet, worrying about my bum all day every day! It's s**t! Literally. I can't have a larger stool as I get problems, but if it's too soft I end up sore and burnt. Agh.

I've been on this rollercoaster for over 2 years and I'm losing the plot now.... It's the pain I can't deal with... It's mentally draining and life changing, and the worst thing is...... It's not damn life threatening.my CRS is willing to do a second LIS if the tests show high pressure. Not sure if I've lost faith in him, he's a very good surgeon, but I'm not sure now if I need a fresh pair of eyes as such..... I'm more scared now than I've ever been.

I really hope in January you can get some answers from the CRS.... It's not good having to wait so long, and then wait again for the next steps... Like you I feel like it will never end. We just want our lives back.... Are you off work still?

Rach x
Hem Banding sept 2012
2Fissures
Nitro- Effective short term
April 2013-Botox-Effective short term
Diltazem-No effect, developed Rash
July 2014-Diagnosed High Resting Pressure
LIS performed on 17.9.14
Ongoing pain/re-tears. Awaiting pressure test results.
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Re: Problems with my LIS

Postby Worrier12345 » 09 Dec 2014, 10:09

Hi Rach,

I never had the pressure test. Although the surgeon always said I would have to have it done before he did LIS, the last time he checked me out it with the scope it hurt a great deal - he said that the muscle was clearly in spasm and he didn't need to do the test - especially since this was only really need for "high risk" patients such as women and older people. I kind of wish now that I'd asked to have the test done, just to be sure it was the right thing to do - but at the time I was just pleased that things would be progressing faster.

I'm working from home most days, which is a curse and a blessing- being on my own all day doesn't help my state of mind, and tends to mean I obsess about my arse all day.

I understand exactly how you feel about just wishing it would end. I would love to go back a few years to when I just used the toilet when I needed to, in and out, no thinking about it before or after. It has literally taken over everything.

I am really sorry for you and everyone who is dealing with a lot of pain. The fact that I never really had much pain, and still don't, makes me think that I've got myself into this situation by making a bigger deal out of my fissure problems in the first place. Kind of wish I'd just tried to ignore the blood and discomfort, rather than pushing for surgery. I've thought about it so much now I don't know what to think, it all seems like a big mess, with no easy resolution.

In your case, it's good that your CRS is still trying to help, and wants to do things properly by doing another pressure test - that definitely seems like a good idea. But I don't see how a second opinion could hurt either.

Thanks and good luck,
Worrier
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4 1/2 weeks post op - still leaking stool

Postby Worrier12345 » 12 Dec 2014, 07:22

It's been over a month now since my LIS and I feel utterly distraught.

Regardless of the consistency of my stool I get leakage throughout the day - sometimes it's runny stool, sometimes solid. Even if I cleanup using a mirror so that the anal area (and just inside) is spotless, it still happens. I can see that it is leaking out of the new, rather wide fold that has been created by the LIS incision.

This is really taking it's toll on me. I feel utterly lost and alone, and worse, I really don't see a light at the end of the tunnel. I honestly feel like I have made the worse decision of my life, and now I have to live with the consequences.

I don't mean to be melodramatic, I know that there are people who have to deal with so much more than this, but things have been getting on top of me over the past few months, LIS was meant to fix things so that I could get on with my life, now it seems to have made things worse.

I don't feel I can talk to anyone about it, and I am honestly unsure if I want to live like this (I have been so low that I have had to call the Samaritans several times over the last couple of weeks, and I'm not sure I have the strength for this).

I don't see the issue getting any better. It seems that the problem is a "gutter deformity" in the anal cushion caused by the LIS incision, rather than a problem with the sphincter muscle, since I can hold on to gas, and the leak only really occurs at this part of the anus. What's more, I know that there is no way to fix this - I have read every medical paper and there is no permanent solution - it is just a case of dealing with the symptoms as best you can.

I see my surgeon for my follow up in January. But I do not have any hope regarding this. Like the other consultant I saw for an emergency appointment a couple of weeks ago to discuss this, he will say "this was the risk you took, you were aware that it could cause incontinence, and that is what has happened".

I am reaching out for some reassurance from the people on this board, to get me through the next few weeks.

However, nobody seems to be able to tell me if my situation is normal or not. Did anyone else's anus appear to have a gap in it where the incision site was made? Did anyone else leak solid stool every day? Or am I the only person on this board to have had this experience?

I wish you all well, and I would greatly appreciate any advice.

Thanks,
Worrier
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Re: Problems with my LIS

Postby Rachael 1984 » 12 Dec 2014, 07:49

Hi Worrier.
I'm so sorry you are dealing with this issue. Can you call the surgeons secretary and see if they can do anything?
I know it's difficult on the NHS because they just leave us....

I don't recall anyone on here having the deformity. Can you search to see?
I don't know if it would help to go on some Antidepressants? They've really helped me out, I'm currently back on them now. I know they won't deal with the issue, but they might help with the mindset and the depression. It's just not right and people don't understand what the bum problems do to our minds.

The Samaritans are an excellent charity and if that helps to talk it over with them, then do so. Can you speak to your GP to see if he/ she can maybe contact the CRS for you....

I wish I had the answer for you, don't give up hope though, there has to be an answer.

Rachael. Xxx
Hem Banding sept 2012
2Fissures
Nitro- Effective short term
April 2013-Botox-Effective short term
Diltazem-No effect, developed Rash
July 2014-Diagnosed High Resting Pressure
LIS performed on 17.9.14
Ongoing pain/re-tears. Awaiting pressure test results.
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Re: Problems with my LIS

Postby Worrier12345 » 12 Dec 2014, 11:29

Hi Rach, thanks for your quick reply - I appreciate you taking the time to offer help, especially when you are having difficulties yourself.

There's no way to see the surgeon until the beginning of January. He has already refused to see me privately in the last couple of weeks, so I'm just going to have to wait.

I have read this board, and what feels like the rest of the internet, obsessively over the last few weeks trying to find answers. Unfortunately, there is little written about gutter deformities, and few experiences that match mine.

Although there have been some people who experienced leakage of stool post-LIS on this forum, they do not offer me much hope. Most seemed to have a much minor issue, where they had to go back to wipe an hour after a movement, or just make sure they are completely clean afterwards to ensure that they don't get leakage later on. My leakage seems to go on all day, regardless of how clean I am.

My main concern is that I can see that my anus is now deformed. Before the operation it looked normal, a line with creases (with a small skin tag at the anterior where the fissure was). However, now it is completely skewed. Somehow it has become a kind of zigzag shape. It looks normal at the posterior, where the anal cushions seal shut, but then the opening diverts horizontally to where the LIS incision was made at 3 o'clock), before diverting vertically again to the anterior end. It's hard to describe - does that make any sense? I have not heard of anyone on this board mentioning such a change post-LIS. And the change was immediate, as soon as I looked a day after the surgery I could see that it didn't look right - with what I then described as a "crater" at the left lateral location of the incision.

Where the incision was made (which seems to have been done just inside the anal canal from 3 o'clock and up slightly towards the anterior) it's as if there is no anal cushion to create a seal, unlike around the rest of the anus. Instead there is a new indented groove that goes from the opening down into the anal canal. This is where the stool leaks and collects throughout the day.

I have no hope that this will rectify itself, since nobody seems to have experience this I can only go on what I can see and what I have read. Even if the muscle regains strength, it seems I will still be left with a mishapen anal opening, and this groove through which stool can leak. From what I have read, it is not something that surgeons can fix. Injectable agents can be used to bulk up the mucosa to create a functional seal - but this is not practiced widely, is still in experimental phase, has limited success and is only a temporary solution.

I am full of regret. I wish I had just lived with my fissure as so many do who are not in great pain. I blame myself entirely for pushing for this surgery, and I am now facing the consequences.

The only thing that is getting me through the days is the thought of speaking to my surgeon to ask what went wrong and why it happened, when it is supposed to be, by most accounts, a "simple and safe procedure". Once I get an answer, which I don't expect to be much of an answer, if any, I will just have to go on with my new life of leakage.

Again, I apologise for this self-centred, self-pitying post. I realise that many people live with much worse problems and that I am making mine much worse by dwelling on it and feeling sorry for myself. But I think I've reached a point now where I don't have the strength, the dignity or the inclination to pull myself out of it any more.

Regards,
Worrier
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