Sad to be back

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Sad to be back

Postby Make.it.stop » 06 Feb 2021, 18:44

I hoped never to be driven back to this site, but alas...

Hello all, and thanks for reading. My journey began over three years ago, when one day I noticed some painless blood after wiping. At the time I thought nothing of it since I've had enlarged hemms for as long as I can remember, and seeing a little red happened at least annually. But I kept seeing it day after day, then weeks, then months. Eventually I decided I ought to have it looked at despite living in Asia and not being keen on navigating a low/no English medical system. So I did some research and planned to visit a hospital after a brief end of year trip.

But the fissure couldn't wait till the new year. After uncharacteristically not having a BM the day before, on New Year's Eve it came in guns a blazin'; explosive force causing a pain I had never known, like razor blades were clamouring over one another to get out of my ass as fast as possible, leaving a trail of blood and feces in their wake. Unlike other aspects, this wasn't the most fun thing to experience in a hostel given the semi-public toilet stall. Luckily I maintained awareness, but unluckily (as I soon discovered walking to cause the debilitating secondary pain of having a soldering iron activated and used on the inside of my anus) I was due to recolate to another hostel that day. I eventually made it and spent the next several days shivering in the poorly insulated building, hovering over toilet seats and pit latrines looking into water dyed red. Happy new year!

The next few weeks were slightly less lonely but equally agonizing, with the added stress of seeing two doctors who examined me excruciatingly painfully and invasely (thought from them I learned that it was a fissure, and what that was), and finalizing long-standing plans to move out of the country in which I resided to travel to several others in order to choose another place to settle. How was I going to survive this? I wasn't sure but it was too late to think about it. Plus it was god damn cold so at least I'd be suffering in the warmth once I left. I figured I could always spring for another medical exam in another more affordable country and maybe get treatment. I spent most of my initial time writing in agony, basically immobile for the first half of every day, poring over medical website and journals trying to learn what I could about fissures. It was looking bad, but not hopeless. Surgery terrified me, but there seemed to be several options to try before that. So to start I bought a plastic tub at a local market and sat it in after BM's, then after reading some sufferers' and doctors' recommendations, during them. It felt a bit better and the bleeding was less consistent, but it was still a problem.

So I saw a surgeon who told me those drugs used as first line medical therapy? Not legal in Asia. Arse. Well, nothing to do besides what I've been doing, I guess. I kept at it but things didn't change much, though I still changed countries. I was functional most of most days but those chunks of broken glass kept forcing their way out of me on the daily. But then one day the inevitable came: I got a stomach bug. At first it was abysmal, but I kept on using the tub. And then I realised: no blood. No butt pain. I can walk...when my intestines aren't exploding! Hallelujah! And it stayed so even after the diarrhea. Although instead of my previous one mostly formed stool a day, I was still having 2-3 quite loose ones thereafter, which persisted for about a year and a half (sending me down another rabbit hole of wondering what was wrong in that manner; no test ever came up with anything).

I mostly went back to regular life, though with some newly acquired trauma from the fissure (and other things) which stayed with me, but no relapse...for long. A hospitalization just over a year ago gave me a hard stool which aggravated my biggest hemm then moved into being a very brief and mild fissure (seemed to be a correlation there), and then had another minor yet totally unexplained one this summer. Welcome to 2021, and a few days of cold dry air mixed with too many pretzels gave rise to a Destroyer stool, aggravating that same hemm at first, and just like last time moved up the posterior midline causing a fissure; tolerable at first, until this week when the bleeding and pain have cranked up to 10, then 11. Possibly even worse than last time. Went to emerg as my GP is in another city and a good doc prescribed a nifedipine/lidocaine mix...which seems to be doing absolutely nothing. The day I started using it was the day it became insane and I thought I might be reacting, but the next day I put it on my hand to no ill effect and didn't use any on the rear, and it still was excruciating. So bad that any position save for fetal on my back (sometimes side) feels like degrees of that old soldering iron for hours, until evening when I can kind of function. Hot sitz tub helps until after about ten minutes of being out of it. Farting hurts and I can feel my pulse in the fissure. I am not averse necessarily to Botox (thiughtnthe cost may be prohibitive), and surgery is still terrifying, but so is living like this...

TL;DR Now that the story has caught up to the moment of me writing I think the fun literary bent will fade as the horror of existence is apparent. Is it normal for nifedipine/lidocaine to have literally no impact? I can feel the pain/spams now interfering with my ability to totally empty my bladder at times too, which is kinda really freaking me out. The amount of pain and way I have to position my body to feel any relief means I basically can do nothing for most of most days. I have a (surprisingly only phone) consult with a GE Monday but the secretary said when I called to confirm that my GP had likely misreferred me as that isn't really his area and I could be referred out elsewhere, otherwise I might be seen 2+ weeks after the initial call. It's cold and lonely and covid for f-$K's sake and this is NOT the time for this to be happening, to me or anyone, anywhere, ever. Seriously, I would not wish this affliction on any person.

Despite that I am glad this resource exists, and am hopeful to connect with people on here. I at least got to enjoy the distraction of flexing my literary muscles writing this ridiculously long post, which if not a beginning for interaction will hopefully at least entertain others out there. Now it's your turn, universe...
10/17-31/12/17 – First signs/annihilated by Fissure 1
3/18 – Fissure 1 healed by sitz bath/toilet & GI bugs
1/21 – First signs/annihilated by Fissure 2
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Re: Sad to be back

Postby Rich44 » 07 Feb 2021, 17:22

You really should consider getting the LIS surgery and putting this behind you. When the lidocane/niphedipine didn't work for me my CRS immediately said to do the LIS and "get on with your life." He was right. Everything is behind me and I have no more pain or issues in the bathroom. Life is back to normal. Just try to go to a good CRS. My surgeon is the head of the colorectal department at the hospital he's at. He's very good at microsurgery. He also had me do an anal manometry test to make sure my sphincter was strong enough to handle the 6% cut and not be incontinent. I was so strong I broke the test! He said I could crack a walnut in my butt. Even if he had cut me 12% it probably wouldn't have mattered! Either way, I didn't even need pain killers after the surgery. I refused them because I knew any pain from surgery would be nothing compared to what I had endured. I saw him 3 weeks later. Fissure 100% healed. Done. Go get the surgery!
Chronic Fissure June 2014 - October 2020
Botox, skin tag removed - February 2015
Levator Ani September 2014 - February 2016 (caused by stress - left my job, cured!)
Lateral Internal Sphincterectomy, skin tags removed - October 2020
Fissure 100% healed!
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Re: Sad to be back

Postby Make.it.stop » 08 Feb 2021, 00:44

Hey Rich, thanks for the quick reply. My first connection on here! Surgery isn't totally out of the realm of possibility, though it is honestly my last resort, for reasons I've outlined in my new more general thread here: where-i-m-at-t26114.html
Would love to hear more from folks there or here :bouncing heart
10/17-31/12/17 – First signs/annihilated by Fissure 1
3/18 – Fissure 1 healed by sitz bath/toilet & GI bugs
1/21 – First signs/annihilated by Fissure 2
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Re: Sad to be back

Postby Rich44 » 08 Feb 2021, 14:04

Hey, I read your other post. Look, I know you hope to self-treat this yourself since it worked last time and I guess that is ok, but forget cost. In other words what would you pay for this to go away today? Seriously. Would you pay $1,000? I am sure you would. What about $5000? You might! Remember if it could be magically over TODAY - what would you pay? You can do an anal manometry test to see how strong your sphincter is for the LIS then you'll know if there will be any issues. I am telling you - going to the CRS and getting this over with after 6 YEARS of agony was the best thing ever. Recovery wasn't bad for me and the mild pain post surgery was nothing compared to what I had endured. Botox is considered a temporary solution. You might get relief for months and then right back to where you are now. It's up to you. I know you want to hear from other people but again - 6 years of suffering and treating it talking to you here. I had Botox. I had fiber and sitz baths and medications. You really want to "make it stop?" Relieve the pressure and have them cut the sphincter. Then you'll be saying, "why didn't I do this sooner?" Just make sure you find a great CRS. Good luck buddy.
Chronic Fissure June 2014 - October 2020
Botox, skin tag removed - February 2015
Levator Ani September 2014 - February 2016 (caused by stress - left my job, cured!)
Lateral Internal Sphincterectomy, skin tags removed - October 2020
Fissure 100% healed!
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Re: Sad to be back

Postby Stef2020 » 12 Feb 2021, 09:48

Hello,

Sorry to hear you are suffering again.

I would also seriously consider LIS. I suffered on and off for 7 years and as I used to always think I had 'healed' between episodes I was very against surgery as believed i could heal it myself forever but after a very  bad episode at the end of last year I decided I couldn't go on. I put all my fears behind me and had LIS 4 weeks ago. Looking back, I honestly don't know what I was worried about. I had painful bowel movements for 1 week (but only lasted for a max. 45mins and no where near the usual pain) and now I would say I'm 99% healed! I am never one for even taking medicines, let alone surgery but I really want to shout it from the roof top for every sufferer out there to just get it done and save a whole lot of misery!
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Re: Sad to be back

Postby Make.it.stop » 16 Feb 2021, 20:50

Hi Stef, thanks for weighing in. I haven't ruled out LIS but being in a not big city in Canada means that even if I decided I wanted it today, the reality of tracking down a skilled and reputable surgeon, then actually waiting for the procedure, means it would be a rather long time till I was able to get it done.

And like you it's going to be a final consideration; I'm so glad both younand Rich have had great experiences, (and that is statistically the likely scenario), but you've also both had it done quite recently, and several members here seem to have had recurrences well after surgery, which I think would break me. There would be literally no other option at that point and in all honesty I may not be able to go on living we're that the case. And that is a scary thought. And forget about post surgical complications, etc. etc., which scare me enough on their own.

I guess the reality of today is that I already feel that if life were to continue as it now is then continuing to live it would soon become unbearable, so...I dunno. I really am hoping to also hear from folks who maybe had some success after a time with more conservative options. I mean I was only using the nifedipine/lidocaine combo for about a week, without apparent results, until a specialist recently said I ought to switch to a diltiazem/hydrocortisone combo, which I'm now on, to no apparent results as well. But was that too fast? The pharmacy said to use the dilt. twice daily for a week then only at night if symptoms improve, but the pain seems to have actually been ramping up. Some days taking three Tylenol right after a BM seems to make the aftermath pain end slightly earlier (4-5 hours vs 8-9), sometimes it seems to do nothing at all. I can't control every other variable so it's hard to know. Has anyone had luck with a more effective painkiller?

Really just hurting, scared, feeling alone and like every option is destined to fail. :( The only person I've interacted with all day was a distress line volunteer. Hope the rest of y'all are doing better than me
10/17-31/12/17 – First signs/annihilated by Fissure 1
3/18 – Fissure 1 healed by sitz bath/toilet & GI bugs
1/21 – First signs/annihilated by Fissure 2
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Re: Sad to be back

Postby dmcff » 17 Feb 2021, 04:34

Hi, sorry you are feeling alone - there are many others here who have gone or are going through what you are experiencing. I'm in U.K., so am not really qualified to give advice on the situation in Canada, and I am not a medical professional - but I can tell you that at a fairly early stage in my struggle with fissures I was advised not to use hydrocortisone, as it dries everything out. Also, Acetaminophen (Tylenol, Paracetamol) won't help very much with pain management. After trying many other suggested remedies, I found that the anticonvulsant Pregabalin (Lyrica) was more effective as a painkiller; others here have found that Gabapentin works fairly well in controlling fissure pain. And there may be more alternatives of this kind, but you need to ask a doctor about them.

It's important to consult a CRS and get all the tests done - MRI, CAT, sigmoidoscopy, etc., to rule out cancer - but also a trained mental health professional who can help you with stress management, pain management and problems of social isolation.

Some have found colorectal dilatation a safe and effective route.

Just reading the older posts on this forum can help you a lot.

Hope you can manage the fissure - it's really a question of management rather than complete cure, I found, after rejecting the surgical option, or reserving it as a last resort. There are other routes you can take - physical therapy, pelvic floor exercises, yoga, even psychotherapy, as it's important to reduce stress and anxiety.

Wishing you luck, and remember that you are not alone.
2014 Anal fissure
2015 CAT scan, EUA, sigmoidoscopy, 2 MRI scans - 4 hospital stays
2016 Pain severe then moderate to low
2017 Moderate pain
2018 Physiotherapy, pain management
2019-20 Just living with it
2021 Better, but AF is still a recurrent problem
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Re: Sad to be back

Postby Yishai » 26 Feb 2021, 23:44

It's me, the thread starter, back under a new account (mods, did you know the site is a little broken? If you alter the site theme to one of the bottom two, don't remember which, it will not work upon login on any device or browser. Might be worth a look).

Thanks for the words dmcff; covid is definitely a uniquely awful time for anyone to be dealing with this. I saw in one of your other posts that you're in your 70's; I really hope you've had the support from proximal people in your life through all of this. You spoke of gabapentinoids; I'm assuming those are prescription-only in the UK as well, yes? I looked into it and am quite intrigued but as I suspect is similar with your NHS, the Canadian system doesn't allow one to simply take their healthcare business wherever one pleases, as private practicing of services covered by the national system are, I believe, illegal. I'm lucky that I have a decent GP but for any specialist it's an eternity of waiting for anything and if you get stuck with some buffoon, back to square one. Speaking of which...

I had a wretched go with a GI yesterday who was operating under the unfortunately common MO of "I am here to fix you problem and this is what will happen" so naturally it was awful and there was no dialogue. Just tried to cram more hydrocortisone into me via suppositories, and after the pain of instering the wand with numbing agent I mustered the gusto to put a stop to things. So he gave me some to take home, prescribed oral diltiazem and said he could look into getting some "Rectal Rockets", which seem to be a more complex formulation of similar things. Dude doesn't seem to understand that getting half my finger joint up there is hard enough work, let alone anything with "rocket" in the name, hah. He does the Botox (which I was quoted to cost about $550 CAD for anyone's reference), but as I hate the bastard I don't think I'd pay him for it. LIS would be in the main hospital

In my shaken state I filled the dilt. rx and picked up some Anusol, Calmoseptine, and half-priced docusate just cause I was already there; used the latter before bed and only ate soft/liquid stuff yesterday and had a decent go of it this morning actually. Although I still spent all of today feeling like there was a jagged soldering iron on max in my rear, so that felt like less of a win. Spring is starting to happen and I really would love to be able to walk in the positive-degree sunshine. :(

(Oh and mods, another tweak to maybe make: timing out during post writing! Lucky I always copy my draft but it can really discourage folks to lose all their work)
10/17 - Fissure : first signs
31/12/17 - Fissure 1: obliteration
3/18 – Fissure 1: healed by sitz bath/toilet (& TD?)
1-2/21 – Fissure 2: first signs & obliteration
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Re: Sad to be back

Postby dmcff » 02 Mar 2021, 13:18

Hi again,

Anti-convulsants like gabapentin and pregabalin are available here in UK on prescription only, and I expect the situation is probably the same in Canada.

Yes, I'm 76, and was 69 when I had my first fissure. I've had some support, especially from local community-based organisations, but essentially I live alone with a couple of pet cats.

I'm sorry to hear that you've had trouble accessing the forum. In the past there have been times when it has been down completely, and I hope those times are not returning. The problem of losing one's draft usually occurs if one is not logged in and is using the 'quick reply' feature, so it's a good idea to check and make sure one is logged in when writing or editing a post. I agree there's nothing more frustrating than losing one's work this way!

dmcff
2014 Anal fissure
2015 CAT scan, EUA, sigmoidoscopy, 2 MRI scans - 4 hospital stays
2016 Pain severe then moderate to low
2017 Moderate pain
2018 Physiotherapy, pain management
2019-20 Just living with it
2021 Better, but AF is still a recurrent problem
dmcff
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