My fissure journey

Diary of my mad sphincter

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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My fissure journey

Postby msimon » 17 Feb 2015, 12:27

Hi all. Someone told me I should have a diary for all that has been going on. So, here it goes...

I got my first problematic fissure during a routine hemorrhoid banding. The Anoscope was pressed into my back rectal wall at some point and I felt the moment it happened and the trickle of blood. After repeatedly commenting on the fact that the CRS cut me he finally apologized and blamed a 'sharp edge' on the tool. I am still so angry about all this because well over a year later my issues continue from this Doctor. I did warn him prior to scoping me that I tear easily and am tight back there. I even asked if he had a smaller scope but he was indifferent (I know they exist as my previous CRS used one on me). I have had problems with tight pelvic floor muscles for years and have been receiving botox injections for this. I would occasionally get a tiny fissure that would heal up within days and certainly never caused me much issue. The time around when I got this scope, my pelvic floor botox Doctor had discharged me as a patient after treating me for 5 + years. I was only told of this when I tried to book my next appointment and was told that 'I no longer needed to see her' in a jubilent voice by her secretary, as though I should be celebrating that I was cut off from the treatment that gave me my life back after suffering in agony for 5 + years before I met her. I could never find out why she wouldn't see me except from the physio she works with that she wasn't comfortable treating my problem anymore. She is a urologist and had been treating my pelvic floor with a focus on the rectal area. How can you just change your mind like that when someone is counting on you so much? I still can't get over it as I know things would have never gotten to this if she wouldn't have stopped treating me. I even tried writing her a letter and begging to no avail.

This forced me to go back the the CRS and his treatment was botox into the internal sphincter. I reluctantly agreed on account of having botox there before and it not working so well for me with my pelvic floor dysfunction. I couldn't handle the spasms anymore so I went with half of what he wanted to give me, which was 25 units. This small amount rendered me nearly homebound as I have to have BMs, with little notice, at any time of the day. It helped the spams but made my other muscles in the area go crazy, mainly anismus (http://en.wikipedia.org/wiki/Anismus). Whenever I have gotten botox before it would be spread about the pelvic floor, not just one muscle. I tried 2 more injections with this Doctor and a round into my pelvic floor (new Doctor-missed the right muscles) before submitting to LIS. I cried all the way to the OR it had gotten so bad and had taken over my life and spirit completely.

My immediate recovery from the LIS was pure hell. I swelled up so much I felt like I had terrible thrombosed hemmies and could hardly stand or walk for weeks. The spasms following BMS were worse than I ever imagined. Slowly, I regained some function but with that so too did my spastic poops return. Amazingly, somehow the fissure seemed to have healed and the LIS site, mostly, except I was battling a recurring infection at the surgical site for several weeks. It would keep swelling up and burning and some puss would come out. I have been on 3 weeks (on and off) of cipro/flagyl, which made my whole body ache and burn. Finally, I agreed to more surgery as the infection was clearly due to some pocket that formed from the surgery and was not going to go away on its own. This surgery was not as painful but by now my muscles were already hardly allowing any BM out without a fight and knew I was going to be in for a rough recovery. I hate that I always seem to be right about these things but unlike my LIS, this surgery was no longer elective. I tried to confirm that the 'deroofing' he was going to do would be to the outside of my bum but the thing is with pelvic floor dysfunction the muscles pull the tissue up and in and I have been tearing nearly daily. Blood almost every day and I even wonder if some is from my fissure coming back as it was just newly healed before all this and the blood streak on my stool is suspiciously toward the back. The pain also feels more inside as well.

So now I have essentially a giant fissure from the recent surgery, plus maybe also maybe the one that lead to all this. I have a much awaited appointment with my new pelvic floor Doctor tomorrow, who at last visit wanted to only do trigger point injections on me a few times before moving to botox. Only now I am at the point that I cannot see that things are going to improve if some of these muscles that spasm during my BM are forced to not tighten and allow the BM to come out. I am feeling very stressed about not only convincing her to do botox on me but also how to get the right amount in the right places since the last time she did them she missed them completely and my fissure actually got worse. Since I have had LIS, I don't think it would take much to make me incontinent and/or give me a horrible unsupportive feeling or a feeling of needing to have a BM all the time (something I have had from botox before and is awful). This has just been such a long and painful road. Th whole reason I got the LIS in the first place was to maybe not have to get botox anymore so I am feeling really defeated by all this. Each day since the last surgery has been more painful and I take this mean that I am doing more damage daily than I am healing. I thought the LIS was going to help me through this and just don't understand. I am super stressed about finally getting this right as I just want some sort of life back again so badly. I have hardly left the house and socialized in over a year due to all this and that alone has me so depressed I just don't know how much more disappointment and ongoing pain I can take. Why can't I heal?

Sorry for the long rant. Thanks to anyone who makes it though it. :afsmile: If it weren't for this board and its wonderful members I don't know where I would be. If you haven't suffered from this condition, you just don't get 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: My fissure journey

Postby woundedspirit » 17 Feb 2015, 21:52

Oh msimon. You have been through so much and have many things going on at one time which makes it all the harder. Don't worry about the rant. It helps to just get it out sometimes and can help us sort things when we write it down. Thank you for sharing. I am sure at one time it will help someone else with what they are going through. I wish I had more practical information to share with you to help but I don't really know a lot about the pelvic floor issues or fistulas. And yes there are many wonderful board members who are wishing the best for you because only they have a real understanding how debilitating these problems can be. You just gotta keep going and get to the other side of all this. That is what I tell myself. I am sending all the encouragement I can. I so hope your next appointment will bring some healing and not anymore hurting for you.
Hemorrhoid Surgery
Scar Tissue
2 Anal Fissures
Failure of All Topical Treatments
Failed LIS
[size=85]EUA and Fissurectomy
Hoping to avoid Flap Surgery
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Re: My fissure journey

Postby owmybum » 18 Feb 2015, 07:47

You have really been through the mill with this dear msimon. I can totally understand how disappointed and deflated you feel after the apparent failure of your LIS.... I've been there and bought the tshirt!
Things will start to get better... Slowly slowly.
Maybe you should push for more testing to see how high your resting pressure is?
When I gained a brand new fissure from my flap surgery I found that medical grade manuka honey applied to it really helped speed up healing. It took a good few months but it eventually did.

Try to stay positive sweetie.... Things can only get better right?!

Hugs
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 )
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Re: My fissure journey

Postby msimon » 23 Feb 2015, 14:15

Thanks OMB and Wounded. Your encouraging words are so good to hear right now, especially when I know you have been through so much yourselves.

As an update, I got 40 units of botox into a few areas in my pelvic floor last Friday. I requested such a small amount due to fear of it making things worse. Let's hope it's just the right amount and in the right places. BMs continue to be agony. The burning has moved from mainly the left side where he 'deroofed' to the back/left and I am really worried that I have a fissure back there. My skin really burns all around down there and my Hubby said it looks white like when you soak in the tub too long, if you know what I mean. I have cut back on baths to just after my 2 BMs in the am and ointments but it is always getting moist down there on account of the seeping from the wound. Of course it is just inside so any gauze I tuck back there isn't really helping. I really don't know what to do. Is this going to affect my healing? I wonder if a barrier cream would help but don't think I could get a finger or anything there without causing damage.

I see my CRS tomorrow for my follow up and I am so worried about how much the prying to look is going to damage things. He is not exactly gentle and the area is so sore :( I also still have a swelling back there that I am not sure if is still infected or not. I have tried pushing on it the last few days and think something came out. I haven't had the courage to look down there since the LIS and don't want to start now. Don't think I could handle what I would see, nevermind what I feel. I hope the SRS has some good news and advice tomorrow. I don't know how much more of this I can take, really.
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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Re: My fissure journey

Postby owmybum » 23 Feb 2015, 14:37

I'm so sorry you are still in so much pain msimon. I really hope the Botox kicks in soon and starts to relax things down there for you.
Make sure your CRS is fully aware of how much pain you continue to be in, and is gentle with you tomorrow when he has a look.
My fingers crossed he can see some healing going on down there!!

:smilyhug: :smilyhug:
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
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Re: My fissure journey

Postby woundedspirit » 23 Feb 2015, 23:32

Sorry m. I have my fingers crossed for you too.
Hemorrhoid Surgery
Scar Tissue
2 Anal Fissures
Failure of All Topical Treatments
Failed LIS
[size=85]EUA and Fissurectomy
Hoping to avoid Flap Surgery
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Re: My fissure journey

Postby msimon » 24 Feb 2015, 01:43

Thanks W.
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: My fissure journey

Postby msimon » 24 Feb 2015, 19:31

Another update: Saw my CRS today and he told me that I did indeed have a sinus forming where the LIS incision site was. Guess the surgery was truly necessary then. When I asked him what the difference between that and a fistula is he told me that a sinus goes on to form a fistula. A sinus only has one opening. So I guess the good news is that I got to it before it got worse. He also said that the procedure to fix either of those scenerios is the same, 'unroofing.' He made a wound the size of his fingernail and he said that it is now half the size it was when he made it 2 weeks ago, so that makes me relieved. Even though things have seemed so bad it still seems to be healing. I guess the body can do some amazing things. And pain is not always an indicator of how bad things are either. He also said that he didn't see a fissure and that there was no sign of infection. He still wants me to use antibiotic ointment on the area and said that a moist wound will heal faster than a dry one which confuses me as so many on here have talked about how they have to keep their wound dry. Anybody have any insight into that? So, I am to book another follow up for 2 weeks and he thinks things should be mostly healed by then. Well, let's hope indeed! I just keep dreaming of the life I want to be able to live again. I keep getting close only for things to change again. It is so hard being patient after soooooo long, especially when I thought that the LIS was going to be the silver bullet, and also the last thing to try :scratch:
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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Re: My fissure journey

Postby Garrod » 24 Feb 2015, 20:21

That's good news, msimon, hope you're feeling better after talking to your doctor! :%_+:
Wound dry vs moist - confusing indeed, should be dry as far as I know..?
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Re: My fissure journey

Postby owmybum » 25 Feb 2015, 18:26

That's really good news msimon..... Things ARE healing! No more infection either! Great news.

I have been told by a nurse friend to keep a wound moist. When I had the fissure caused by surgery I put honey on it most of the time, and I suppose that's keeping it moist. It helped to heal it really well.

I'm sure it won't be long until you are getting back to normal active life.... But I know how agonising it is to wait for healing when those around us carry on with life. Things just seem to be put on hold.... But in a short while things seem to change.

OMB xxx
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
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Posts: 2826
Topics: 42
Joined: 16 Sep 2012, 16:00
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Has thanked: 205 times
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Mood: UGH !


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