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.

Return to LIS - Considering surgery or already had it?




Re: 3.5 months post LIS update

Postby msimon » 02 Mar 2015, 12:51

"I keep thinking things can't get worse and they always do."

"Every time I try to take steps to fixing things I make it all worse."

Those words ring so true to me. I feel that too but I keep thinking, and people keep telling me, that it's time now for things to go in my favour.

I would try to not worry too much about the tests as they are a necessary evil to trying to resolve your problem. I doubt you would have been happy to not have them done and then always wonder if there was something you could have done to improve things. I know I wouldn't be able to handle that, but I know it's not easy to go through. Sometimes we just have to take chances in life and it's hard because when they don't work out it's so easy to beat ourselves up. But things could also work out too and then you wouldn't have that benefit if you hadn't tried. I think that since you had the LIS you should heal up quite quickly from these tests but be patient and kind with yourself. You haven't done anything that you should feel bad about. No bad decisions here, IMO.

'Almost to the dentate line' likely means something in the area of 1cm, which is a good cut. More along the realm of the older surgeries rather than the more popular conservative ones that cut to the top of the fissure, unless of course your fissure is that long. It's funny, in a way I wish my surgery would have been less conservative as I still have so much trouble with BMs and I think it is the internal sphincter. I can often feel the upper part that is not cut spasming and it sucks. Sure it won't hurt the fissure area but it hurts and makes BMs very difficult at times. But then I read your cautionary tale and am not so sure. I guess everyone is so different as I think that there are many on here that have had that length cut and haven not mentioned any major issues. It will be really good to know what the manometry comes back with. Keep us posted and best of luck that things go well.
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
Moderator
 
Posts: 1343
Topics: 64
Joined: 08 Aug 2014, 19:38
Has thanked: 76 times
Been thanked: 154 times
Gender: Female

Re: 3.5 months post LIS update

Postby Worrier12345 » 04 Mar 2015, 06:14

Had the manometry test yesterday. The woman doing is was very kind. She could sense my anxiety as soon as I walked in and was good about talking me through everything. She said she would do a digital exam and if that was too much then we didn't have to do the test, and she said we could stop at any time.

I have to say it was not a nice procedure, it lasted about 30 mins with probes going in and out and inflating etc. I was have a hard time relaxing, which was a real problem as I was tensing my sphincter during the test when it was meant to be relaxed, but I had little control over it.

Was pretty sore afterwards and still am today, but there hasn't been anymore blood which I'm grateful for, and I'm just glad that all the tests are out of the way now.

She said she couldn't give me any info until she'd analysed the results but she suspected that my sphincters weren't working as they should be (not sure we needed tests to tell us that). Have to wait for appointment with my surgeon to go through the results of the test. Might be a while on the NHS.

Over the past few weeks and these tests it seems I can at least rule out any problems with the external sphincter. That means that my leakage is definitely due to the internal sphincter. So I think I pretty much hit the nail on the head right after surgery - either too much muscle was cut, or cutting the muscle created a deformity in the anal canal.

If the problem is due to the change in shape of my anus since LIS, I doubt that any surgery or physio will be of any use.

However, If too much muscle was cut, is there any way that this will get better? I'm 4 months post-LIS now, I don't think things feel any tighter than they did just after surgery, and the leakage has not improved at all. Would physiotherapy help? Or is it just going to be a case of dealing with the symptoms of the leakage?

As always, any input is much appreciated.
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: 3.5 months post LIS update

Postby msimon » 05 Mar 2015, 12:33

Congrats on getting though those awful tests Worrier. It must be a relief to have them over with. Let's hope there will be some good information for the Doctor to figure something out for you. Glad to hear you had a kind person for the manometry. I do have to question that validity of that test too as I would think most people would be more tense than 'normal' with a probe up their butt and someone reading results from it. But it the best we've got so it has to do.

Glad to hear the bleeding has stopped. Are you any less sore yet?

Studies have shown that the internal sphincter gains tone up to 1 year after surgery, with the largest increase between 3 and 6 months. Also, most people end up having higher than normal resting pressure again by the end of the year, but still lower that pre-LIS. So maybe time is all you will need.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1357726/
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
Moderator
 
Posts: 1343
Topics: 64
Joined: 08 Aug 2014, 19:38
Has thanked: 76 times
Been thanked: 154 times
Gender: Female

Re: 3.5 months post LIS update

Postby Worrier12345 » 05 Mar 2015, 14:38

The tests are done and the bleeding has stopped. However, there's always a "but", and it is that the soreness continues to get worse.

I have tried my hardest to have a normal day without checking too much and trying to keep my mind off the leakage. But no matter what I do (and what I do includes rectal cleansing after a BM, don't forget) by 5pm I am sore.

I'm trying to understand it because I find it baffling but I'll explain as best I can.

Since I have started using a syringe bulb to clean after a BM, I don't have pieces of stool leaking. What I do have, however, is an anus that is constantly moist. Some of this I assume is normal moisture since it is that kind of area (although I have lost all concept of just how moist a normal anus is). I can go wipe throughout the day and not get any faeces or staining in the paper. However, I am still sore. It seems that the soreness is coming from JUST inside the anus - maybe the first 1-1.5cm. I have to part my anus slightly to get to it - but this is where the moisture and residue is collecting and causing all the soreness. It's not something I can just wipe away, it takes a mirror and some rolled up toilet paper to remove and even then it doesn't seem much. But it must be this causing the soreness. It can't all be in my head. It's definitely moist down there, I can feel discomfort when walking which gets worse throughout the day.

I've been over all the posts that mention leakage on this site and others and it's usually a case of going g to wipe again 30 mins after a BM. Mine seems to be a longer, less obvious process of constant, slight moisture leakage which causes a an improportionate amount of discomfort.

I feel sore, depressed and insane. And I have no idea how to deal with any of it. Just when I think I've got a handle on things and ive reached a level of misery I can handle, the carpet seems to get pulled from under me.

I apologise for this ridiculous self-pitying rant - I know many of you are dealing with horrible pain - but I do appreciate any advice.
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: 3.5 months post LIS update

Postby msimon » 05 Mar 2015, 14:47

I don't see too much hypocrisy ;) When you use the enema syringe, do you get the sense that you are pushing all the water out? Does it "look" like water when you say things look moist all the time? I wonder if you may have a yeast infection. Did the soreness start right after LIS? I also wonder if regular application of an oil-based substance would help to protect the skin from all the moisture, such as coconut oil?
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
Moderator
 
Posts: 1343
Topics: 64
Joined: 08 Aug 2014, 19:38
Has thanked: 76 times
Been thanked: 154 times
Gender: Female

Re: 3.5 months post LIS update

Postby msimon » 05 Mar 2015, 14:57

Also, does the moist skin look red, inflamed, irritated, etc?
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
Moderator
 
Posts: 1343
Topics: 64
Joined: 08 Aug 2014, 19:38
Has thanked: 76 times
Been thanked: 154 times
Gender: Female

Re: 3.5 months post LIS update

Postby Worrier12345 » 05 Mar 2015, 16:54

Thanks for replying msimon.

Yes, when I expel the water it feels like I am getting it all out. I try to squeeze a bit to get it all out but I'm dubious about pushing too hard.

The moisture around the outside of the anus could well be normal sweat. It's not something I really paid attention to before lis, however, but now the outside seems constantly moist and slightly sticky. Another stange thing I've noticed since lis is that my arse cracking gets very sweaty before I have a BM, almost dripping wet sometimes - this certainly never happened before lis and I find it completely baffling. I wonder whether it's that the muscles in the area are working extra hard to not let the stool slip out these days. But perhaps it is just caused by my ever increasing anxiety.

The skin at it sorest part doesn't look particularly red or inflamed (although it can all look a hit angry when I've been prodding around during with it too much). However, as I said, the sorest part seems to be just inside the anus. It looks to me more like the sorest parts looks paler than the surrounding skin - like skin goes when it's constantly wet (like fingers when you've been in the bath too long). But it could just be my imagination. Sometimes the soreness seems to come from a deep fold which is impossible to examine properly. It's hard to get a proper look and I'm worried about using any kind of cream inside the anus - is it safe to do so?

To be honest I have no idea what's going on down there. It's weird. From the outside, my anus doesnt always look so bad. Apart from its zigzag shape and skin tag, sometimes it looks quite normal. However, if I part it slightly, the area underneath the skin tag looks like your standard raw looking fissure wound, and then there's the leakage residue lurking just inside the rest of the canal.

Tomorrow I'm going to try another new tactic on top of my usual routine - a piece of cotton wool fashion into a small plug. Perhaps that will let me work out if it's the moisture down there causing the soreness. Fingers crossed.

I never would have guessed I would give so much thought to my anus, let alone write at length about it in a public forum. Life is a strange and unpredictable thing. And also rather shite at times.
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: 3.5 months post LIS update

Postby msimon » 05 Mar 2015, 21:09

"I never would have guessed I would give so much thought to my anus, let alone write at length about it in a public forum. Life is a strange and unpredictable thing. And also rather shite at times."

I completely agree with you on that!

I ask about the moisture thing because with my wound seepage I definitely notice that if I have a more 'wet' day my skin burns, and my hubby has said it can have that wet skin appearance (white-looking like after being in the bath too long). Anyway, what I have found helps is to use a barrier. I used diaper cream, which I even used to use inside my anal canal before my fissure, but in the inside I would suggest coconut oil, aroma free. It would be completely safe to use inside because it is food afterall. It is very soothing and since it's an oil, it would keep the moisture off the tissue. Lots of people on here use it. You could do a search. Otherwise you could use petroleum jelly, which some don't like to use daily as it is petroleum, but this is what is used to make all sorts of ointments that are to be used up there so....I would think it would be okay too. I, personally, would not put anything abrasive there like cotton wool if your skin is already sore. But that's just me and I have very fragile skin down there.

I also have a sweaty butt! lol. This feels like confession and I know when I am more stressed out I sweat more so maybe it's the anxiety. I know after I had my hemmie surgery 13 years ago I had sweat down there and it would be so painful and irritating so I always used a very soft cotton gauze stuffed up between the cheeks. Once the skin got older and had more integrity it stopped being so sensitive. I also moved away from a very warm, humid climate and maybe that helped.
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
Moderator
 
Posts: 1343
Topics: 64
Joined: 08 Aug 2014, 19:38
Has thanked: 76 times
Been thanked: 154 times
Gender: Female

Re: 3.5 months post LIS update

Postby Worrier12345 » 06 Mar 2015, 13:50

I tried using a cotton wool plug today. It kept the outside dry all day, so I'm guessing that it's leakage from inside the anus that is usually causing the constant moistness on the outside.

Even with the plug it was still sore though. The soreness is definitely more on the inside of the anus than the outside.

Worst thing about today though was when I removed the plug. It was only small - about 5mm wide - but when I removed it I could see quite clearly how little muscle tone there is down there now. It was gaping open. I remember back in the day when I used to put gtn ointment up there and I'd struggle to get my little finger more than 1cm up there. Now it seems like I could get my thumb up there no problem. I can see quite far into the canal as well. It made me utterly depressed with no hope for the leakage getting better.

It's been 4 months. There is no regaining of muscle tone - if anything I'd say it has got worse. I think it's pretty obvious that too much muscle was cut. And we all know that it's irreversible. I'm feeling pretty beat down now. I keep thinking I can manage but I just can't. The sheer weight of regret alone I'd killing me. Let alone the endless procession of cleaning and squinting, and leaking and soreness.

As always, apologies for the rant.
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: 3.5 months post LIS update

Postby msimon » 06 Mar 2015, 14:24

Great diagnostics Worrier. At least you are pinpointing more now where it is coming from. My guess would be that it is likely water leftover from your cleaning. You know, it's funny how opposite we are on this but I am so tight down there I would not be able to stick anything up there. Maybe the first 5-6mm is loose but after that it is tight and spasming and so sore :(

We are examples of two extremes I suppose. I am full of regret these days too. If I am healing it is so slow and then when and if I do finally heal I have the muscle aftermath to try to fix as I already had pelvic floor muscle problems before I got the fissure and every procedure has made it worse. Anyway...this is your thread, not mine ;)

I don't know if you know much about the internal sphincter and how it works but it constantly changes tone throughout the day depending on what is happening in the bowel, etc. In fact, anxiety has a pretty big effect on it. It can tighten it or loosen it and applying pressure can also loosen it. Maybe when you are looking and prodding it makes it looser for the time being and doesn't necessarily reflect how it is as you walk around throughout the day. I would really try to suspend what you think about your tone until you get your test results, as well as what your CRS says. Also, according to that article I posted for you, you haven't peaked in post-op tone yet so it could still improve. The tone in the part that was cut will never come back but the tone of the muscle that is left (and even if it was up to the dentate line there should still be 50% of your sphincter left) will get stronger.

For the time being I think you have to determine how to manage your symptoms. Maybe using a barrier cream would help with the soreness? I also have to wonder if maybe you are having pain that is from pelvic floor muscles as I have often thought that the skin burning feeling was due to that. Maybe you could see a pelvic floor physiotherapist while you are waiting to see your CRS? They are very insightful about the muscles down there and may be more help for you than a Doctor.

I know this was not what you had planned for your life Worrier. It is not for me either but I know if I sit and wallow in it I only feel worse. I also know it would likely end my marriage as my Husband just can't handle that anymore. Lately, my mantra has been for me to work on my patience and perseverance with this. It is a huge challenge for me as I am not a patient person but I am a very stubborn one ;) It is still early days and we both have lots of reasons to hope things are going to get better.
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
Moderator
 
Posts: 1343
Topics: 64
Joined: 08 Aug 2014, 19:38
Has thanked: 76 times
Been thanked: 154 times
Gender: Female


  • 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 1 guest