3.5 months post LIS update

Ongoing leakage issues and more

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

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Re: 3.5 months post LIS update

Postby Worrier12345 » 06 Mar 2015, 17:19

Once again I am humbled by your kindness msimon. I thank you dearly for your reply. It was exactly what I needed to get me through the weekend.

It is funny looking back how we ended up on opposite ends of the lis-fail spectrum and how we both wish our sphincters were a bit more like each other's! I hope that we both find our situations improving soon and that our wayward muscles settle somewhere in the middle. In the meantime I'm glad to have you around for days like today.

I hope your weekend brings you luck and healing. I'm going to drink a lot of beer.
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Re: 3.5 months post LIS update

Postby msimon » 06 Mar 2015, 21:03

Thanks for the kind words Worrier. You are very welcome. I hope that I can be of some help in this difficult time.

Enjoy your beer ;)
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: 3.5 months post LIS update

Postby Worrier12345 » 18 Mar 2015, 09:58

2 weeks on and I'm still struggling with everything. I'll update you all in case anyone can offer any insight/advice.

I'm still doing my irrigation routine every morning. Sometimes it goes better than others. I try not to leave the house until lunchtime every day. Despite the cleaning routine I still get soreness and some leakage throughout the day.

Not had an appointment to see the surgeon after ultrasound and manometry tests. (I have got appointments for mental health and incontinence help in April though).

I went to my GP to see if they could give me any notes from the surgery or since. It seems that after my last visit to the surgeon (my 3 month post-LIS follow up at the end of Jan when he ordered the tests), he stated that my anus seemed "hypotonic" with barely any squeeze pressure but no discernable sphincter defect. He also stated in the notes that this does not "quite seem to be a complication of surgery".

I find all this worrying. Firstly, my sphincters are clearly too loose. Second, he says there was no defect but the ultrasound clearly shows a massive gap (of about 1/3 the circumference of my internal sphincter). Third, if it's "not quite" a result of the surgery this would suggest that the surgery was a terrible choice for me - since I probably didn't have high resting pressure to begin with.

I have had enough of living like this. The cleaning, soreness, shit and regret. There seems to be no hope that things will get better. They can't fix a weak/damaged internal sphincter. I will leak for the rest of my life.

I have started isolating myself from everything around me. I have made arrangements so that I can work from home more. I feel like shutting myself away. Over the last few months I've really lost any hope for the future, and I feel that I've brought myself to this and now have no way out.

I know this is all melodramatic, and that this kind of miserable ranting may be more suited to a forum dealing with anxiety and depression. But you guys understand more about the physical side of this, so I hope you don't mind me venting here.
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Re: 3.5 months post LIS update

Postby Worrier12345 » 19 Mar 2015, 16:46

Hi all. Sorry to be a pain but did anyone have any advice regarding my last update. I don't have anyone else to talk to about this and could really do with some help.
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Re: 3.5 months post LIS update

Postby chachacha » 19 Mar 2015, 19:19

I wonder if your CRS couldn't see a defect because it was only observable on the CT scan, and he may very well acknowledge its existence if he has seen that scan result by now? And as far as the comment about it "not quite being a complication of the surgery", perhaps he doesn't want to be responsible for your current situation. Or, he could truly believe that your sphincter was already compromised, and his surgery only revealed the issue.

I wouldn't give up hope though, because as I'm sure you know, the medical profession is advancing at an incredible pace these days, and you never know what new procedure could be just around the corner (stem cell research, for instance), and I also vaguely recall reading about doctors creating a way for you to open and close your sphincter manually, via a type of closure like that used in sleeping bag covers. Like a drawstring? This kind of procedure may still be in the very early stages of development and trial, but it certainly can give you hope, I hope.

I can't begin to say how sorry I am about how much you've suffered, because I know that words are just that. But you should know that you have the ear and sympathies of all of us here on the forum.

Hang in there and I hope that others chime in with some more help for you.
Fissure since about 2007
Fissure diagnosed in 2011
Diltiazem for two years - didn't work well
LIS January, 2015
Hemorrhoidectomy December, 2017
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Re: 3.5 months post LIS update

Postby msimon » 19 Mar 2015, 19:29

Worrier, I am saddened to hear you are still struggling. What did you think of some of my previous suggestions of barrier cream to protect the skin or even incontinence plugs?

http://www.coloplast.co.uk/peristeen-an ... en-gb.aspx

I also found an interesting article: http://www.nursingtimes.net/home/specia ... 73.article

As for your Doctor's notes, if your 'squeeze pressure' is low, that refers to your external anal sphincter and this can definitely be improved upon with exercises. Are you being referred to a pelvic floor therapist as well (maybe that is part of the incontinence clinic)? I wouldn't read too much into those notes until you can see your CRS as I think he's just trying to cover his ass after screwing up on you. Would it be possible for you to see another CRS for another opinion?

I also don't know if this 'defect' in the internal sphincter is that much different from what any of us that have had LIS would show on an ultrasound. I am curious now. Wish I could feel mine and know more but I have to just heal first. I know when I am walking around I feel like part of my butthole is missing and I really don't like it but I am holding out hope that things are still going to change a lot. There are so many on here that have said it took them a year for their bum to feel normal after LIS. And that you really don't know what you will be left with for at least several months. You have so little information about all this yet and that in itself is worrying, I know. But you have to suspend all that for now as you have help coming. And you just don't know what that will be yet. I am very glad you will be getting help with the mental health aspect of all this as we all understand this makes a person a basketcase. I have a therapist I talk to regularly and it has been quite helpful for me. I also know how painful anxiety is and maybe if you can get a better hold over that your outlook on this will improve too. There is still a lot of hope for you Worrier. Just hang in there. These issues require so much patience and perseverance.

How do you think your fissure is doing? Do you think it has healed some from the tests?
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: 3.5 months post LIS update

Postby Worrier12345 » 20 Mar 2015, 04:55

Hi and thanks for replying.

Chachacha, I appreciate your reply. I know there have been some advances in treatments for incontinence, but as you say most are still at the early stages of testing. It would be several years before these were widespread, plus, my situation would probably not be considered bad enough to warrant surgery. So I'm not holding out too much hope unfortunately.

msimon, I tried a cotton wool plug for a couple of days but it wasn't very good. I found it uncomfortable, and by the end of the day, when I removed the plug - even though it was only a few mm wide - it seemed that my anus was almost gaping open. I thought that perhaps this might not be doing any good. Instead I have been applying coconut oil regularly throughout the day. This seems to help - mostly with the mental aspect. If I feel moisture down there I can just tell myself it's the oil, it eases my anxiety slightly and stops me feeling I need to check for leakage (although I still can't resist this urge several times a day).

The surgeon's notes do worry me. I think he's right in that there does seem to be a problem with incomplete evacuation, which I think I have had at various degrees before LIS. But the fact that the muscle is now so weak, and that I'm experiencing leakage are CLEARLY a result of the surgery. I never leaked stool before. When I see him I will go armed with some evidence (textbooks, journal articles) that suggest that too much muscle was cut. I am looking at the surgery notes here, it says "IAS dissected to dentate line and divided under vision to just below the dentate". I assume this means he cut the maximum length possible - which as everyone on here seems to know, is not the tailored cut that we expect of LIS these days. I know from my research that the internal sphincter cannot be strengthened.

As for my fissure, I have not had any blood since that day after the ultrasound. But I still don't think my fissure is healed up. But that's the thing - I never had much pain from the fissure in the first place, so it isn't something I'm too worried about now. I feel like I have bigger problems (this is something which makes me feel so stupid - I had surgery for something which wasn't that painful, and now I couldn't care about the initial problem, because the surgery has created bigger problems - what an idiot I am for pushing for the surgery).

As for the mental health side of things. I feel like I've crossed a line. My life has been on a downhill trajectory for a couple of years now, and all of this has pushed me over the edge. There are only a few options left now. The least destructive of which is to isolate myself to save those around me from the mess and misery I've created. This may sound melodramatic and excessive, but I've been heading that way for a long time and it seems for the best. People have told me that these thoughts and feelings are due to depression and anxiety, but I don't think they are. It would be comforting to think that my view has been distorted by illness, but I think in reality that this is just who I am and my perspective is a perfectly rational reaction to my situation.

Anyway, sorry for going off topic, I know this is a forum for fissure stuff, but I thought it may help to describe the context of my post-surgery problems.

As always, I do appreciate any input. It does make me feel less insane to be able to talk about this stuff.
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Re: 3.5 months post LIS update

Postby msimon » 20 Mar 2015, 11:35

"IAS dissected to dentate line and divided under vision to just below the dentate". I assume this means he cut the maximum length possible - which as everyone on here seems to know, is not the tailored cut that we expect of LIS these days. I know from my research that the internal sphincter cannot be strengthened."

By the sounds of this it seems that you had an open LIS (as opposed to closed, in which they may accidentally knick the external sphincter). As for the length of LIS, there are 2 main surgeons in my city for this type of surgery and the one I went to did a tailored LIS, while the other I consulted with wanted to do it to the dentate line (for everyone) as I think he just wants to heal the fissure at any cost and really downplayed incontinence. He scared me off, although there have been a number of times that I wish I had a longer cut. Everyone is different in these situations. A cut to the dentate line is not THAT uncommon these days as there are a number on here that have had it (I think Chachacha is one of them) but definitely the majority have had the tailored approach. That said, some have had to have a second LIS so I guess the Doctor weighs all that out at the time of surgery. One thing is certain though, if you weren't that hypertonic (which is probably the case since you said you weren't having painful spasms) then there is no way he should have cut that much muscle and this should have been apparent to him when you were in surgery. That reeks of incompetence. Also, research does seem to indicate that the internal sphincter does regain tone after time. You are right, there is nothing we can do to strengthen it except be patient and let it do its thing.

"People have told me that these thoughts and feelings are due to depression and anxiety, but I don't think they are. It would be comforting to think that my view has been distorted by illness, but I think in reality that this is just who I am and my perspective is a perfectly rational reaction to my situation."

I am glad you are getting help for the mental health issues. Whether how you feel is just you or not I suspect you are not happy feeling this way and we all deserve happiness, even you :) So I really hope in time they can change your perspective on things and you will feel better, at least mentally, if not physically. When are your appointments?

I'm glad the forum helps you. We are here for you.
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: 3.5 months post LIS update

Postby chachacha » 20 Mar 2015, 11:56

Just wanted to pipe up to say that I did not have the longer cut, and this way avoid questions later based on msimon's memory that I did, lol.
Fissure since about 2007
Fissure diagnosed in 2011
Diltiazem for two years - didn't work well
LIS January, 2015
Hemorrhoidectomy December, 2017
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Re: 3.5 months post LIS update

Postby msimon » 20 Mar 2015, 12:37

I'm soooooo sorry about that Chacha! :oops: Geez. I'm wondering who I was thinking of...

Well, they probably aren't on here anymore as they probably healed right up with a long cut like that!
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
msimon
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Posts: 1343
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Joined: 08 Aug 2014, 19:38
Has thanked: 76 times
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