Returning visitors

persistence of AF

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Returning visitors

Postby dmcff » 02 Feb 2024, 02:38

A comment from the side-lines: it's remarkable, perhaps. how many visitors to the forums (including myself) keep on returning, sometimes even after years of pain free existence. Received wisdom used to be that posters appeared only when their symptoms were bad, and vanished once those symptoms cleared up. Long silences and gaps in posting were supposed to indicate that in general life was getting better for most people. In fact, though, we know that for many sufferers no ready cure is at hand, and in general AF continues to be one of the most painful but widespread conditions. In spite of pelvic floor therapy, diltiazem, GTN, Botox and LIS, there seems to be no easily available treatment that can address AF decisively and successfully.

By the way, this not intended as a bout of negative thinking, just an observation based on a mindful approach to the issue.
2014 Anal fissure
2015 CAT, EUA, sigmoidoscopy, 2 MRI
2016 Pain severe then moderate to low
2017 Moderate pain
2018 Physical therapy, pain management
2019-20 Living with it
2021 Still AF
2022 Therapy, meditation
2023 Pneumonia
2024 CT scan, MRI, ERCP
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Re: Returning visitors

Postby chachacha » 02 Feb 2024, 10:33

Over my 60 odd years, I've had several medical issues that were stubborn and complicated enough that I had to seek out health forums for information and support, and once those issues are resolved, I always continue to visit those sites to help others who are struggling now. I always hope that my own experiences will be of use to others.
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: Returning visitors

Postby dmcff » 03 Feb 2024, 09:46

Yes, maybe health forums are the medium that really can be effective - even though no medical advice usually comes from them, the support and companionship they can offer is genuine and truly helpful.
2014 Anal fissure
2015 CAT, EUA, sigmoidoscopy, 2 MRI
2016 Pain severe then moderate to low
2017 Moderate pain
2018 Physical therapy, pain management
2019-20 Living with it
2021 Still AF
2022 Therapy, meditation
2023 Pneumonia
2024 CT scan, MRI, ERCP
dmcff
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Re: Returning visitors

Postby Hazey123 » 04 Feb 2024, 06:55

It’s invaluable to know there are other people who know how you feel. Support forums are so important. I’ve really relied on this one during my quest to get better from this. It’s great that people who are pain free return. They are a beacon of hope. Altho not so much medical advice can be obtained here, some really useful tips on things that work or don’t work for individuals. I for example realised that my dramatically increased fibre intake (on the advice of doctors) combined with fibogel was a very bad combination which led to a significant worsening of my symptoms. Some tips and tricks here can make all the difference even when an immediate fix isn’t available!
AF following skin tag surgery Feb 2022
GTN ointment
sigmoidoscopy & EUA Sept 2022 no fissure found
2nd opinion Jan 2023 fissure diagnosed, diltiazem - allergic
recommended Botox Fissurectomy
3rd opinion - dilation 2x per day plus GTN ….
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Re: Returning visitors

Postby dmcff » 11 Feb 2024, 05:49

Yes, I am pretty certain that I don't have an anal fissure anymore, but I sure have a sore butt, and am wondering what to do about it - discontinue the stool softeners, try pranicura again (it didn't work first time), go and see another proctologist, post another message on the forum. It's easy to grow cynical when you get older (I am 79 now, it's my birthday today), but it doesn't help things. All I want is to get rid of the constant pressure and discomfort in my anus, but maybe I just have to live with it.
2014 Anal fissure
2015 CAT, EUA, sigmoidoscopy, 2 MRI
2016 Pain severe then moderate to low
2017 Moderate pain
2018 Physical therapy, pain management
2019-20 Living with it
2021 Still AF
2022 Therapy, meditation
2023 Pneumonia
2024 CT scan, MRI, ERCP
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Re: Returning visitors

Postby chachacha » 11 Feb 2024, 19:59

Happy Birthday!

My fissure is long gone (LIS surgery healed that), and so are my hemmorhoids (hemmorhoidectomy was a godsend), but I have extreme pain on defecation, which, luckily, only happens every three days. That schedule is the result of taking opioid medication for the pain, but honestly, I would not be able to handle this kind of pain on a daily basis. My most recent test was a CT scan which showed "chronic rectal inflammation", but my surgeon doesn't have a treatment for me. I will be asking him later this month to set me up with and MRI next, and hopefully something will be found and treated. Currently, after about 6 trips to the loo (to make sure that all three days' worth of BM's have been expelled), I take the painkiller which drops my pain level from about a 9 down to about a 7 1/2. I am unable to sit at all, so spend about 10-12 hours lying on my side on the couch, only able to watch TV, read a little, or do a puzzle or two. The first hours are the worst, as I wait to be able to take a pill, but boredom is a huge nuisance, because it takes so long for me to be able to sit up again (and I do that when the pain level drops to about a 5).

What exactly are you experiencing these days?
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: Returning visitors

Postby patience_and_healing » 13 Feb 2024, 13:42

Wow chachacha, your pain sounds like it would overwhelm anyone. I'm amazed that you are coping with it. I really hope you get that MRI and find the cause of the pain.

As for me, I am approaching my third trimester of pregnancy and dealing with a lateral fissure from irregular bowel movements due to a changing diet. It healed last month but is back again. So I'm back to my sitz bath and amerigel routine till it heals.
8/16-12/16: Fissure due to antibiotics
5/17: Botox to sphincter, fissure healed
9/19: Trigger point injections and pudendal nerve block
11/19: Botox to pelvic floor
8/20: Botox to pelvic floor in new location.
On and off in pelvic physical therapy
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Re: Returning visitors

Postby chachacha » 13 Feb 2024, 20:54

And a big wow to you too, patience_and_healing. What a horrible thing to have happen during your pregnancy? My pregnancies were both good, but I ended up in emerg about 3 days after my second son's birth, with insanely painful thrombosed hemmorhoids. I hope that you can turn things around and then enjoy your new bundle of joy (is this your first)?

My pain is very hard to cope with, but you do what you have to. My CRS is on vacation until next week or the week after, and I hope that he'll agree to the MRI scan. That's what he had originally wanted, but we went with the CT instead because the wait wouldn't be as long. Since that didn't give him anything to work with, I suspect that he'll agree to the MRI now.

Good luck with your healing. I hope that once you heal, there won't be any future complications.
Fissure since about 2007
Fissure diagnosed in 2011
Diltiazem for two years - didn't work well
LIS January, 2015
Hemorrhoidectomy December, 2017
chachacha
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Re: Returning visitors

Postby patience_and_healing » 14 Feb 2024, 13:46

It's a really tough thing for me to deal with on top of all the other discomforts of pregnancy. (This is my first) I've been diligent with my miralax and magnesium, so it must be salads I ate for the past few days that caused this. No more large amounts of insoluble fiber for me. Last month I had the same thing happen and it healed but clearly it's been reinjured so I'm being extra careful this time around.

Can you get an MRI done privately? Is that an option in Canada? Waiting times for a simple scan being so long sounds really frustrating.
8/16-12/16: Fissure due to antibiotics
5/17: Botox to sphincter, fissure healed
9/19: Trigger point injections and pudendal nerve block
11/19: Botox to pelvic floor
8/20: Botox to pelvic floor in new location.
On and off in pelvic physical therapy
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Re: Returning visitors

Postby chachacha » 14 Feb 2024, 20:18

Hopefully, this won't happen again. Your first? How exciting! I'm a grandma now with two granddaughters aged 3 1/2 and 11 months. New babies are so wonderful.

No, not an option here unfortunately.

I was diagnosed with breast cancer on Friday though, so I'll be busy with that over the coming months. If I can reach my CRS, he can put the paperwork in and by the time I've done my breast surgery and then the radiation, maybe the MRI appointment will be ready.
Fissure since about 2007
Fissure diagnosed in 2011
Diltiazem for two years - didn't work well
LIS January, 2015
Hemorrhoidectomy December, 2017
chachacha
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