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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Re: My fissure journey

Postby Turk the cat » 18 Apr 2015, 11:09

My Dear M,

You are such an eloquent, strong person, and your encouragement has assisted so many on this site, myself included.

Please hang in there.

I'd also say another opinion wouldn't hurt. Alas, the wheels turn slower in the Canadian medical system, but at this point maybe not so bad. It sounds like you have a good medical, therapeutic, team behind you.

Waves of love, Turk's mom

PS. An exotic ginger. Who knew?
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Re: My fissure journey

Postby owmybum » 18 Apr 2015, 11:38

I am so so sorry to hear this sweetheart. I know the soul destroying feeling only too well when one is given such grim news.

I have to agree with others though.... A second opinion would be the way I would go.
Your skin type sounds alot like mine... Very fragile and prone to tearing. I'm trying to get to the bottom( no pun intended there) of my rubbish skin, and am in the process of getting diagnosed with hypermobility EDS. there really has to be some reason behind non healing wounds.... I refuse to accept its just one of those things ( insert consultant shrugging shoulders here)

Huge hugs to you

OMB xxxxx
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 Scientist2516 » 19 Apr 2015, 23:04

Hi msimon and owmybum, I added a new update to my "One person experiment" thread. In it I talk about how I used topical estrogen cream, and think it may have been the final magic to cure me. I really don't want people to think it's a miracle cure, or that estrogen is necessarily safe for everyone, but when you talk about fragile skin, I think estrogen is really worth thinking about. I understand that OMB may have a genetic condition that affects collagen, and maybe estrogen wouldn't be helpful. I'm very hesitant to make big claims for estrogen, but knowing your suffering I can't hold back on information that might help. So take it for what it's worth.
I'm on the pill and not menopausal. But I think the cream did help regardless.
Love to both of you. I do so hope you can both get better.
Nifedipine/lidocaine, no help
Diltiazem, effective, but caused major rash
Nitroglycerine, effective.
Topical estrogen for final healing.
Gentle heat to bottom - pain relief, muscle relaxant
Kondremul mineral oil
Time - lots of time.
Status - Healed!
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Re: My fissure journey

Postby msimon » 20 Apr 2015, 10:42

Thanks Scientist. Yes, I saw that thread. I am so Happy for you. Congratulations!

That is interesting that you bring up estrogen cream as I recently started using it as well, as per my Mother's advice. I think we may have even discussed this a while back? I was once prescribed it as the Doctor I was seeing thought my vaginal lining was starting to look a but thin due to being on oral contraceptives so long (most of my adult life). Since then nobody has concurred so I never used it for that. It is a compound that is a year old, do you think it is still good? I have compounded fissure ointments that are still fine...

I was also wondering, were you able to apply it directly to the fissure? I can't reach my incision as it has these swollen skin flaps around it. Do you think it would be enough to put it on the flaps?
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 Scientist2516 » 20 Apr 2015, 15:33

I don't know how long the shelf life is (probably longer than they say) - maybe ask a pharmacist.

Honestly, I don't know exactly where my fissure is/was. I've never been able to see it, though I can see the tag. The colorectal nurse always said she could see it, and she wasn't spreading my buttocks very much, or using an anoscope. So I don't really know how internal it was. All I know is, there was a sore spot where I was putting it, and I was not putting it up inside. I'm sure it wouldn't hurt to put it on the flaps, and hopefully enough will be absorbed to the incision site.
Nifedipine/lidocaine, no help
Diltiazem, effective, but caused major rash
Nitroglycerine, effective.
Topical estrogen for final healing.
Gentle heat to bottom - pain relief, muscle relaxant
Kondremul mineral oil
Time - lots of time.
Status - Healed!
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Re: My fissure journey

Postby msimon » 20 Apr 2015, 16:18

Thanks Scientist :)

OMB, do you find you have issues with your skin elsewhere? I forget, how were you diagnosed with this problem?

I heal really really fast everywhere else but often go weeks or months where I feel like I am getting a cold but it never really comes on. I have some allergies but I think this is different. I actually wonder if there is something wrong with my immune system.

Bottom line is (pun intended), I think it is mostly the tension when I have a BM from my pelvic floor disorder. Ironically, I never suffered from fissures until I started getting botox back there for my BM troubles.This either has upset the muscle balance and function horribly or has somehow weakened my skin. Many years ago I used to be impacted often and never tore. A couple years into botox and I started getting them on and off but healed up really quickly. Then the CRS made one for me and the rest is history!
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 owmybum » 03 Jun 2015, 09:04

Hey msimon..... How are you doing?? Any improvement??

Yes, I have poor healing elsewhere... And you can tell my skin is fragile just by looking at it... It's very thin. I was diagnosed by a rhumertologist. I also have a dodgy heart valve that needs investigating, which is usually the case with EDS.

Have you had any follow ups?? Is there another plan of action for you??

OMB xx
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 » 03 Jun 2015, 13:13

Thanks for asking OMB. I have had some healing of the unroofed area but something is still open as there is a tiny bit of ooze daily. My fissure has been healed for about 4-5 months now, it's the incision area from the last surgery that has been so much trouble. My Husband and I just pried things to get a look and he says he can see the top of it and the indent from it continues to rise up but is still not flush yet (don't know if it ever really will be though). It's not red or anything so I am racking my brain to figure out why I am still in so much pain. Either there is something higher up or it's nerves I guess. I have been repeatedly postponing my CRS follow ups as I have become so afraid to let him near me because he pulls so hard to look but I am getting to the point that the not knowing is driving me crazy. As of now, the next time I could get in to see him is 5 weeks away (July 8th).

I have been going to physio for my pelvic floor and and am having very mixed results where sometimes it seems to really help and other times makes things worse. I am scheduled to have trigger point injections in a couple of weeks as my muscles are tight bands in there that not even a physios finger can break up. The insane pain from this last surgery really did a number down there. I can only imagine how painful a flap would be! My incision area was only a couple centimeters in diameter but it's 10 feet in my brain!

So, no plan of action really except to continue with what I am doing I suppose. I have been using estrogen cream down there and do think it has been what finally initiated some healing. I wonder if something like that would help you. It is supposed to thicken skin. Sorry to hear about the heart valve. What is the plan for 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
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Re: My fissure journey

Postby owmybum » 05 Jun 2015, 03:05

Gosh yes..... Time just rolls on and on............

I'm glad to hear your physio is doing all she can to help you. What are trigger point injections?? Is it a bit like acupuncture?

I may ask about the eastrogen cream...... But I doubt it will help as I'm ( allegedly ) not tearing down there any more.

Um.... Not sure what they can do for my valve... I'm going to have an echocardiogram at the end of the month to see how bad it is... And then they will go from there I spose.

I think you need to get your CRS to have a look and see what's going on in there. Make sure you are firm with thin and tell him to be super gentle. Unfortunatly it's the only way to find out what's really going on in there.

Have they ever questioned why your incision isn't healing??

Hugs to you brave lady
Xxxxxxxxxxx
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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owmybum
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Re: My fissure journey

Postby msimon » 05 Jun 2015, 13:24

Thanks OMB. Hugs back to you. My physio is trying to do what she can but I'm really not sure if she is helping at all. It seems that messing with my pelvic floor is really messing with my BMs, which then injures my incision site. Today was especially bad. No blood but it hurts while it's coming out and that side feels very tight as it passes by. Then the pain and tightness can be with me the rest of the day :( Do you have pain with your BMs still?

I really feel like I don't know what to do and am really scared that this is how life if going to be now, which I just cannot accept. I called my CRS's office again today and nothing has opened up so I am waiting until July 8th to see him.

Trigger point injections are when the Doctor injects an anesthetic solution into the tight bands of muscle and it is thought to cause it to relax. Over time the muscle should become more softer and functional. The needle is longer and thicker than in acupuncture.

My CRS has largely dismissed my lack of healing as me being a redhead or 'being special'. I don't have the typical reaction and outcome for things (like botox and then I got the infection from the LIS) so that's what he blames it on. But in my last appointment he said I would heal slower because I had two surgeries in the same spot and also that I may bleed from the last surgery on and off for years because it was a large area and the new skin is very delicate. That was a surprise to hear!
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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