the never ending story

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the never ending story

Postby jlm1 » 09 Mar 2015, 19:59

Hi everyone!

First, as always, thanks to everyone who shares what is going on with them (good or bad). It's very helpful.
I have been home from work since mid January when I realized that I needed to give this time to really heal without the stress of work, etc. I've been able to focus on physical therapy, which has been so helpful, and just take it easy. As much as one can with a 2 year old that is! Anyway, I am planning on going back to work in 3 weeks. Basically, I have to for financial reasons. I wish I could take the rest of the year off. (I;m a teacher) I am definitely better. But it is so so slow. I had 8 good days in a row and then on Sunday I had pretty bad burning. Not nearly as bad as when the fissure was active though. I believe this is nerve pain. It sends me into such fear. I still watch what I eat (to an extent, as it seems to not matter what I eat or don't eat. I keep my stools soft, never push, I exercise, etc.)
I'm so afraid of having to do my bathroom routine and be out the door by 7, I'm afraid to sit in a car for a 30 minute drive and I'm just terrified of being at work and having to deal with burning!!
I guess I just need to vent. I know this is getting better but it feels like it is taking forever! It is so so slow. This morning the burning was driving me crazy and now I'm ok. I keep telling myself that I can get through each workday and every day will get better. How do you guys cope? What do you do?
Thanks for reading!
fissure May 2014
nitro, diltiazem
botox July
fistula surgery, piece of skin tag removed Oct
fissure declared healed Dec
currently have burning/pain-told it is nerve pain
physical therapy, sitz baths, valium suppositories
hoping I am healing
jlm1
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Re: the never ending story

Postby chachacha » 09 Mar 2015, 22:18

I'm curious as to why you think the fissure isn't active, if you're still experiencing the burning?

My fissure was nothing BUT burning, and some pain during the movement itself. The burning was extreme (level 9 pain), and lasted for between 10 and 15 hours on average. I could get it to drop down to a level 5 for a few hours if I took two Tylenol 4's, but it would stay at a level 5 - 7 for the remainder of the time. I would also not take the pills until I was sure that I'd be having no more "action" that day (I suffered with diahhrea too, so didn't want to waste the pills if I was still going to be rushing to the toilet repeatedly). Also, we did an informal survey on the forum a few months ago, and about half of the members only had burning, unlike the other half who could actually feel the spasms (it was also discovered that there are two kinds of spasms, ones that "throb" on and off over and over, and another kind that does one big, long multi-houred "clench", which we determined was what those experiencing burning were talking about).

I'm so sorry to hear that you're suffering still, but think that it was a very good idea to eliminate the work stress and let your body have a better chance to heal.
Fissure since about 2007
Fissure diagnosed in 2011
Diltiazem for two years - didn't work well
LIS January, 2015
Hemorrhoidectomy December, 2017
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Re: the never ending story

Postby jlm1 » 10 Mar 2015, 08:24

Thanks for your response. The CRS has looked several times and has told me that the fissure is healed. She doesn't see it. She said she heard of this happening before and that it sounded like nerve pain. Truth be told, the burning gets to about a level 4/5 at it's worst. after everything I have been through anything freaks me out. It's enough to be annoying, distracting and make me want to cry a little. I did not experience this when my fissure was active. I had terrible pains for hours after a bm then, they were more like throbbing spasms. This burning started after the simple fistula surgery. Being home had been great, I just thought I would be further along. I thought this would be in the past. It looks like I m going to have to work with occasional burning. And aside from that being a bit depressing, I am just wondering when I will be normal again. ugh. I know many people have worse things to deal with but I feel like I have had my share of anorectal troubles and pain. I'm so over dealing with this...
fissure May 2014
nitro, diltiazem
botox July
fistula surgery, piece of skin tag removed Oct
fissure declared healed Dec
currently have burning/pain-told it is nerve pain
physical therapy, sitz baths, valium suppositories
hoping I am healing
jlm1
Proctosphincteranalogist
 
Posts: 188
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Joined: 22 Jun 2014, 15:20
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Re: the never ending story

Postby chachacha » 10 Mar 2015, 08:45

I didn't realize that you'd had fistula surgery as well, and if this pain does not feel like your previous fissure issue, then it probably isn't. If you did acquire a second fissure though, your doctor could very easily not see it, and it wouldn't be the first time on this board that that happened.

We all wonder/wondered if we'd ever be normal again, and that's because the anal journey is a long, twisted and difficult row to hoe.

I hope that things turn fully around for you soon and that you're back online posting soon, and that you really will have it behind you by the time you go back to work.
Fissure since about 2007
Fissure diagnosed in 2011
Diltiazem for two years - didn't work well
LIS January, 2015
Hemorrhoidectomy December, 2017
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Re: the never ending story

Postby owmybum » 11 Mar 2015, 03:14

I'm in the same boat...... Healed but relentless burning that's different from the fissure.
I think going back to work might be a good thing. Distraction is a great tool when dealing with chronic pain. Your teaching will take the front seat in your brain and the pain will have to be pushed to the back, to be hardly noticed.

Give it a go, armed with your pain meds.... You may just be surprised.

Xxxxxxx
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: the never ending story

Postby jlm1 » 11 Mar 2015, 08:20

Thanks owmybum! Just what I needed to hear and very comforting. Not that you are also in pain, but that I can probably deal with it. I want to go back to work. I think the normalcy will also help.
I feel like I am just waiting for the other shoe to drop. I am always waiting for a horrible pain, like what I had with the fissure, to happen at any time. It's maddening.
I have also been having this slight to sometimes moderate "pinching" pain just when I am starting a bm. It goes away right as soon as I start going to the bathroom. I figure this is also nerve pain? or nerves regenerating? Have you experienced anything like this?
I think my head is def in a better place with all this and I often tell myself that I can deal with this, it's just nerve pain not an active fissure. I am thinking about going back to the CRS one last time so she can look again and tell me that there is nothing there. But I have already been told several times that the fissure is healed so I don't know if I really should have anyone poking around down there. Ugh and groan!!
Thanks again for the comforting words! Hope you are feeling ok :)
fissure May 2014
nitro, diltiazem
botox July
fistula surgery, piece of skin tag removed Oct
fissure declared healed Dec
currently have burning/pain-told it is nerve pain
physical therapy, sitz baths, valium suppositories
hoping I am healing
jlm1
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Posts: 188
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Re: the never ending story

Postby jlm1 » 11 Mar 2015, 08:29

owmybum- just curious, what do you do for the burning? I am using these zinc and coco suppositories called calmol 4. Sometimes a valium suppository but they don't do much and ibuprofen. And of course soaking in a hot tub always feels good!
fissure May 2014
nitro, diltiazem
botox July
fistula surgery, piece of skin tag removed Oct
fissure declared healed Dec
currently have burning/pain-told it is nerve pain
physical therapy, sitz baths, valium suppositories
hoping I am healing
jlm1
Proctosphincteranalogist
 
Posts: 188
Topics: 22
Joined: 22 Jun 2014, 15:20
Has thanked: 48 times
Been thanked: 23 times
Gender: Female

Re: the never ending story

Postby owmybum » 11 Mar 2015, 13:37

Jlm,
I've resorted to gabapentin for the pain. The ibuprofen alone wasn't touching it. I also take ibuprofen in the morning if it feels worse.... And of course the warm baths etc.

I can often get a pinching feeling, but it's usually not with a bm. Actual bms are painless, my pain kicks in about 5-10 mins later.

I think the anxiety of worrying about going back to work will make you feel worse, so try to stay positive.... It's rarely as bad as you think it will be.

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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Re: the never ending story

Postby Jimmy7223 » 28 Jul 2015, 10:30

I am experiencing similar symptoms. Fissure is visibly healed, however, I am still having pretty constant discomfort. Feels like the pain starts from within the anus and actually radiates to my urethra near the perenium in the scrotum. If I apply light pressure to the anus near the fissure, I can feel this pain in the urethra...I can pinpoint it.

When i sit for a long period of time it seems like this nerve is more irritated and I feel more pain in my urethra and makes me feel like I need to urinate. It is an achy burning type discomfort...it is not a pain that is debilitating or makes me need to stop what I am doing, it is a consistent 3/10. Uncomfortable and annoying.

Anyone else's pain radiate to other parts like mine? Is your pain similar to mine, like a burning discomfort? Or are you in keel over 9-10/10 kind of pain?

Thanks for your responses.
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Re: the never ending story

Postby Jimmy7223 » 28 Jul 2015, 10:34

I just want to add...

I have a deep sharp pain during a bowel movement, which feel like it is located further up above the fissure. The discomfort starts to kick in about 15 minutes after a bm.

I also have some discomfort during urination in that exact point in the lower urethra that has the discomfort that radiates from the anus. It will stay burning about 15-20 minutes after urination...about a 3/10.

I am still using nifedipine a few times a day on the location of the fissure as I do feel it is providing some mild relief.
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