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 » 26 Feb 2015, 06:11

Sorry, not sure if I'm confusing things by saying "low pressure fissure". What I mean is that I think I probably had normal resting pressure before, since I don't think I ever really had spasms. Therefore the LIS has made the tone too low. I just feel that it was the wrong operation, and it is my fault because I pushed for it from the beginning. I had read so many experiences of people on here about how LIS gave them their lives back and I thought it would do the same for me - but I didn't even consider that LIS might not be the right option. I guess my surgeon didn't think about it either - that's why he said we didn't need to do the pressure tests.

I've done so much googling about it all my head is a complete mess. Things seem to keep getting worse for me, as soon as I get a handle on things, something else goes wrong.

I feel like I've lost hope. I'm terrified that the ultrasound on Friday will confirm that I've got external and internal sphincter defects and there's nothing they can do to fix it. I'm also scared that it will come back with no clear causes for the leakage. From my research I know that these things aren't very clear cut and incontinence can be caused by many factors. In the meantime, however, I'm struggling day-to-day and I just wish I could stop thinking about it all.
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Re: 3.5 months post LIS update

Postby msimon » 26 Feb 2015, 12:13

"I guess my surgeon didn't think about it either - that's why he said we didn't need to do the pressure tests."

- you are right about that one. The blame for this is on your SURGEON, NOT YOU. It is their job to know when and what to do, not the patient. They are the ones with the training and experience.

" I'm terrified that the ultrasound on Friday will confirm that I've got external and internal sphincter defects and there's nothing they can do to fix it. "

-what makes you think there is nothing they can do to fix it?
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 » 26 Feb 2015, 14:33

I feel that I pushed for the surgery. Both my surgeon and his colleague told me that they don't do many sphincterotomies these days, that they only do them as last resorts for people that really need it. I did the creams for a year then botox, and kept going back to the surgeon. Even though i wasn't in a lot of pain I pushed for the surgery. I feel like I just wore him down in the end and gave him no choice. That's why I blame myself. I became so obsessed with fixing the fissure I didn't stop to think about whether the risks outweighed the situation I was in. And now I feel like I'm paying the price.

As for what they can do about th with incontinence issues now: I've done so much research and it seems that there's not a lot that can be done. Sphincter repair is only for external sphincter and even then it only has minimal success rates. Physiotherapy and biofeedback are generally only good for improving strength of external muscles and squeeze pressure. Injectable bulking agents are still somewhat experimental and only offer short term improvements.

I really appreciate your replies msimon, please don't think in being ungrateful and argumentative. It's just that i cannot see a positive outcome here. I think the best they will offer me is help with managing the symptoms of fecal leakage. Which is what I'm doing now and struggling with.
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Re: 3.5 months post LIS update

Postby msimon » 26 Feb 2015, 16:47

I don't think you are being ungrateful and argumentative. I see a lot of myself in you. I do this with my Hubby all the time. I can find every reason why things aren't going to work out while he keeps trying so hard to make me see it otherwise. I am very solution-focused so I can't help myself but try to help you. I just don't think you should give up on this yet. Have you had any change in tone since the surgery? Research does indicate that the internal sphincter regains tone for up to a year after surgery. There have been some on here that had leakage initially that went away closer to the 1 year mark. I know that my sphincter has already tightened up quite a bit as well. Unfortunately, this is too soon for me as I now have a huge wound down there to heal and spasms that prevent me from pooping easily (sorry had to rant there).

I would think that the fillers would be promising if it is the internal sphincter that is too loose. There is always a colostomy bag? I have seriously considered this for myself and still am as I really don't know if I will be able to heal without the area getting a rest down there.

I know you really feel you should blame yourself but any good surgeon will never 'cave in' to a patient if they don't think it's the right thing for them. In fact, I had a Doctor treating me with botox for my pelvic floor pain for 5 years that up and decided to quit treating me. She decided that I didn't need it anymore and I called and begged and even sent he a letter, begging, to no avail. Nothing could change her mind. I still hate her for it by the way as I think I would not have had to have surgery if she had kept treating me. But I am trying really hard to let that go because it is in the past and I have to move forward. It only hurts me over and over again to hold onto the anger and blame.

Did your Doctor tell you this was a risk? Mine totally downplayed it and said that at the worst I may get a 'skidmark' and the other I consulted, who was much less conservative and typically cuts all the way to the dentate line as a rule, scoffed and acted like it was only possible if you already had incontinence issues. Do you know how much you had cut? I suppose your ultrasound should tell you that. When did you have botox done and do you know how much they used?

I also still think you had a right to seek treatment for your fissure as nobody should have to live with one of those and leaving an open wound back there was only going to invite something worse to happen, like a fistula. And those surgeries can definitely cause incontinence. I guess I am just trying to say that you don't know how it would have worked out otherwise and things could have turned out this way or worse afterall.
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 » 27 Feb 2015, 06:29

Well, I'm just back from the ultrasound. They didn't tell me much, just showed me the gap in the internal muscle from the lis and said the external muscle looked fine.

Obviously, something had to go wrong though. It was a bit sore when he started putting the probe in and then all of a sudden I felt something give and it went in fast. Pretty sure it felt like the fissure opening.

I know my fissure hasn't healed since lis, but looking now it just looked wider. In fact, I don't see it ever healing. I haven't had blood or pain since lis but I don't see any progress with healing. When I spread the skin tag apart it just looks like a moist, red wound. I see no evidence of any healing. In fact, since Lis made things looser down there and easier for me to see it, it looks wider and deeper. The middle of it is like a fold so it's impossible to see how deep it goes.

I'm feeling pretty distraught here. I've got a fissure that won't heal after lis and an anus that now leaks. It's pretty obvious that lis was not the right choice and now I'm screwed. Sorry again for the rant but each day I seem to reach a new low. I can't keep this up much longer.
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Re: 3.5 months post LIS update

Postby msimon » 27 Feb 2015, 12:28

Sorry to hear that you didn't get more answers from your ultrasound Worrier. It's too bad they didn't give you a metric on the gap in your internal sphincter. Did it look like a large gap? When do you see your Doctor to get the results?

That really sucks that they made your fissure worse. Hopefully it will recover quickly. That is strange that your fissure hasn't healed. What did you Doctor have to say about that? I wonder if a fissurectomy would help it heal. Maybe there is lots of scar tissue?
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 owmybum » 27 Feb 2015, 15:03

I'm sorry to hear you had a bad experience today, but now your CRS has some more info he can make an informed decision on what to do next for you.
Please don't think any of this is your fault, any professional surgeon would never give in to any badgering or pressuring... It's just not done. It was his decision to perform the surgery, and he was the one holding the scalpel. Not you. It is just an unfortunate turn of events that has led to this rare complication. Don't throw in the towel yet... You really don't know what can be done...or things could just get gradually better over time.
I've come to appreciate the gravitas of the saying time is a great healer..... As I myself have had to allow myself much more time than I was expecting after my flap surgery.

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Re: 3.5 months post LIS update

Postby Worrier12345 » 01 Mar 2015, 12:43

Thanks for you replies. Unfortunately, things seem to have gotten worse.

Msimon: not sure how big the gap is meant to be - but it looked like it went from about 1 o'clock to 3 o'clock (not sure if i'm using the clock face correctly here but the gap was from the anterior to the left-hand side), maybe a little bigger than that - almost a quarter of the entire circumference. Does that sound big? Does it also sound like it's in the wrong place? I assumed it would be a little gap at 3 o'clock. But this is clearly where the gap that I can see is - and this is where most of the stool seeps through.

Also, I had blood today for the first time since the surgery. It wasn't a lot, but I could clearly feel my first BM sting on it's way out. Although it wasn't particularly large or dry or in any other way different than usual. Sure enough there was blood when I wiped. Not sure if it came from the fissure, or whether it came from elsewhere.

This particularly worries me as I have a manometry test on Tuesday - is this going to make things worse? Will it rip things even more?

Also had a disconcerting experience later on. My second BM strangely caused no blood or stinging. I did my rectal rinse, which seemed easy, with very little stool coming out. However, an hour later I felt like I needed a BM, went to the toilet and all that came out was a lump of mucous. I've seen some mucous in my stool, when wiping for years but never this amount. I'm starting to worry that I have some kind of partial prolapse causing this mucous.

Can't for the life of me figure out what's going on down there. Apart from the irregular shape of my anus after LIS (it's zig zag now, rather than a straight line) and the anterior skin tag, it almost looks normal. However, if I part the skin tag the area below looks like a red wound. It basically looks like all these fissure pictures - anal-fissure-classification-with-images-t7476.html - would I know for sure if it looked healed? Since it's under the skin tag it hard to see properly under the folds. It looks like it goes deep and it's hard to know if what I'm looking at is "healthy" healed skin or a wound.

All I know is my arse is sore, I can't predict my bowels very well, I have trouble cleaning, and I have leakage issues. All in all, I wish I could either go back to before my LIS and not go through with it or go to sleep for a long time, wake up and hope that everything is fixed. Unfortunately I have to deal with this every day, and I've honestly had enough now.
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Re: 3.5 months post LIS update

Postby msimon » 01 Mar 2015, 18:42

Worrier, I am so sorry to hear things have worsened for you. It seems that you may have had your fissure retorn during your ultrasound. I suppose in a way it is best to have the manometry done now so that you can get all the harmful procedures out of the way and start the healing again after. Unfortunately, I think no matter what a person has done down there, when you have an active fissure things are likely to tear a bit. I don't have much to say about the mucous. The only mucous I have ever had has been coming from my infected LIS site, and it was never a large amount at once, thankfully. I do know that the bowel does secrete mucous and I would try not to worry too much about it unless it becomes a regular thing. Have you had a finger up there since your surgery? You would be able to feel a prolapse, I would think.

As for the manometry, it is a very small probe with a balloon that they insert and then fill with water. They may ask you to poop it out afterwards. That part may cause trouble. I had this test done many years ago, when my pelvic dysfunction was really bad and I could not expel the balloon so they had to deflate it and pull it out. This was so rare they had never heard of that. I have anismus. I have not had an ultrasound but I would think that probe is larger than the one used in manometry. Maybe someone else can chime in on that? I would make sure they know to avoid your fissure area as much as possible though.

As for the findings, I would think that you would see a gap that looks like that because when you cut the muscle some of it is going to retract and there will be a gap. My surgeon says he feels one. I also read on here from others that things look uneven/off kilter down there after LIS. I have not looked or felt down there since my surgery since I am still healing. What would be most meaningful is how LONG the incision is as this will determine how much the sphincter was weakened by the surgery. There should be intact sphincter ABOVE the gap and this would prevent leakage. My CRS said he cut 5-6mm (the internal sphincter is about 2 cm in females and 2.5 cm in males-so it is stronger in males to start with). Another CRS I consulted with does up to the dentate line for everyone (I believe this is about 1cm or more) and that scared me. I wanted to be more conservative than that, and most Doctors are these days.

When do you see your CRS next? Is he the one that ordered these tests and you will be following up with?
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 » 02 Mar 2015, 06:23

Thanks as always for the reply msimon.

It was more stinging during BM this morning but no blood. Not sure if I'm going crazy, but I'd say that the stinging was coming from anterior and posterior (my CRS did say that I had a superficial posterior fissure back when I had botox so it may be this). As always, I don't have spasms so that is something to be thankful for. It's clearly a tear or tears of some kind though, which is absolutely devastating considering I'm nearly 4 months post LIS, and I'm dealing with leakage and everything else.

Can't believe I have to have manometry tests tomorrow. All this is just utterly terrible timing. I keep thinking things can't get worse and they always do.

I don't know the length of the cut, but after the surgery a nurse read through the notes and I remember her saying something about the cut being "almost to the dentate line", but that's pretty vague so doesn't help a lot.

I imagine I'll get to see my surgeon in a few weeks once all the test results are done, but I don't have a date yet.

I'm now thinking I shouldn't have pushed for these tests, as they have now brought the fissure problems back to square one. I should have just stuck with the leakage and my horrible cleaning/checking routine and hoped that it would go away. Every time I try to take steps to fixing things I make it all worse. I'm starting to feel like my obsessions and anxieties have created this whole problem and I will never escape. I feel anxious, depressed and increasingly insane. Not sure where it will all end, but I know it isn't going to have a happy ending.
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