Looking for some guidance

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Re: Looking for some guidance

Postby msimon » 08 Oct 2014, 18:49

Prickly sure sounds like nerves to me. That is what I have thought when I get that. I wonder if a medication for nerve pain would help you. There is Gabapentin and Neurontin. Constipation can be combatted with stool softeners and magnesium. I am considering this myself.

I just finally left the house to run errands (first time to do that in weeks) and I could have just collapsed to the floor of the grocery store the pain is so bad. Right now I just want to cry but that will do no good. It feels like every muscle in there except my external sphincter is gone and it is doing all the work. I say external sphincter because this becomes even more pronounced after I use the ointment. I could feel it as a hard ball between my legs while I walked around and it felt like someone was pulling hard on my rectum (gravity?). I have had something like this following botox before but not THIS bad. Initially I thought putting more in the angry muscles I have now would help but I bet it would make it worse as this is how my body adapted to the last round. There needs to be some support back there. Weird thing is it feels a lot worse after I use the ointment (nifedipine) and I suspect this means that there is too much overall relaxation then. It could even be connective tissue that is hurting so bad. Wow! This is just mindblowing. Sorry to ramble....done now ;)
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: Looking for some guidance

Postby msimon » 08 Oct 2014, 18:51

You know, it could be that when you sit some nerves get compressed after a while...It may take time (and maybe more injections) for the muscles to really loosen up after the botox.
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: Looking for some guidance

Postby pafen » 08 Oct 2014, 18:59

If there is pudendal nerve involvement they reckon to avoid all sitting if possible. My pain specialist is pushing me towards the sacral nerve root stimulator. In fact they even use the sacral nerve stimulator to heal anal fissures. The stimulator interrupts the pain signals therefore the the sphincter relaxes and things heal.

Here is a study where they used a sacral nerve stimulator for anal fissures. http://www.ncbi.nlm.nih.gov/pubmed/21304304
Hemroidectomy, anal abscess, fissure, LIS
Pelvic floor Dysfunction since late 2012
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Re: Looking for some guidance

Postby Alyssa » 20 Oct 2014, 21:18

You know, it could be that when you sit some nerves get compressed after a while...It may take time (and maybe more injections) for the muscles to really loosen up after the botox.

That's exactly what my doctor thinks is happening... I just feel so defeated by all this.
2/14 Fissure developed
3/14 Diagnosed w/ fissure given Nifedipine
4/14 Referred to Pelvic Floor Physical Therapy=Pelvic Floor Dysfunction
5/14 Fissure declared "healed"/chronic anal pain persists
9/5/14 Botox to pelvic floor
9/22 biofeedback
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Re: Looking for some guidance

Postby Alyssa » 20 Oct 2014, 21:26

Laker and ray,

How are you doing?
2/14 Fissure developed
3/14 Diagnosed w/ fissure given Nifedipine
4/14 Referred to Pelvic Floor Physical Therapy=Pelvic Floor Dysfunction
5/14 Fissure declared "healed"/chronic anal pain persists
9/5/14 Botox to pelvic floor
9/22 biofeedback
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Re: Looking for some guidance

Postby laker12345 » 04 Nov 2014, 10:56

Well I'm about a month post botox and feel about the same. The first few days after the procedure were really good and BMs were just about pain free. After about a week though, the pain came back to where it was painful everytime. Even with relatively soft/small BMs.

I had to up my dosage of MOM to ward off the pain. But this puts things in a mostly liquid state and I've learned this isn't good for healing.

I just had a checkup yesterday with my CRS. He is putting me on Fiber/Miralax for 3 weeks along with Nfidepene (spelling?) 2-3 times a day. Fiber in the morning and Miralax before bed.

He said that if I'm not better in 3 weeks we should discuss surgery.

This is truly a terrible affliction to have. Something so small yet so painful and sinister. It really sucks.

How are you all doing?
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Re: Looking for some guidance

Postby Alyssa » 04 Nov 2014, 21:42

Today I had to sit at work for much of the day (attended a training) came home and my rectum is burning... Lying in bed crying because I feel there's no way to turn... I'm stuck with this freakin body and I want out!
2/14 Fissure developed
3/14 Diagnosed w/ fissure given Nifedipine
4/14 Referred to Pelvic Floor Physical Therapy=Pelvic Floor Dysfunction
5/14 Fissure declared "healed"/chronic anal pain persists
9/5/14 Botox to pelvic floor
9/22 biofeedback
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Re: Looking for some guidance

Postby pafen » 05 Nov 2014, 00:28

Alyssa,

I had an increase in pain today myself but for different reasons. I had to have a 2nd bowel movement today, which mean I didn't completely empty this morning. Whenever this happens I always seem to get the painful burning spasms a few hours later vs the more mild pain if I just have the 1 bowel movement in the morning.

I will make sure I have a good dose of stool softeners tonight!
Hemroidectomy, anal abscess, fissure, LIS
Pelvic floor Dysfunction since late 2012
pafen
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Re: Looking for some guidance

Postby Alyssa » 05 Nov 2014, 21:58

Pafen,

I'm sorry to hear that you are having a bad day too..this is just so depressing!
2/14 Fissure developed
3/14 Diagnosed w/ fissure given Nifedipine
4/14 Referred to Pelvic Floor Physical Therapy=Pelvic Floor Dysfunction
5/14 Fissure declared "healed"/chronic anal pain persists
9/5/14 Botox to pelvic floor
9/22 biofeedback
Alyssa
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Re: Looking for some guidance

Postby laker12345 » 06 Nov 2014, 13:05

pafen wrote:Alyssa,

I had an increase in pain today myself but for different reasons. I had to have a 2nd bowel movement today, which mean I didn't completely empty this morning. Whenever this happens I always seem to get the painful burning spasms a few hours later vs the more mild pain if I just have the 1 bowel movement in the morning.

I will make sure I have a good dose of stool softeners tonight!


This seems to be the case with me. The first BM I can manage the pain level. The 2nd one seems to really take it's toll on me. I don't get the burn you get, but more of an ache that lasts for hours and I mean HOURS.

I'm not sure what to do, the BMs are mostly small and soft so I don't know how they can get better. MOM made it watery but at least I didn't feel any pain while going or after.
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