4 years of fissures

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Re: 4 years of fissures

Postby dmcff » 28 Nov 2017, 07:43

I now have a copy of the referral letter from the KIMS consultant laparascopic surgeon (who saw me on Thursday) to Mr. Schizas at St Thomas's. Among other things, it says:
I examined him at the clinic today and undoubtedly he has reduced resting tone and very poor squeeze pressures but he is also exquisitely tender throughout the perianal region. I could not find any evidence of any fissure and there was certainly no internal anal sphincter hypertrophy. I am not at all sure what is the cause of this gentleman's symptoms and I would be grateful for any input you can give.

He is referring me to the Pelvic Floor Clinic at St Thomas's, which is under the supervision of Mr. Schizas.

It feels a bit strange that no one appears to know just what is wrong with me. This has been going on for several years, and I hope I can find some answers soon.
2014 Anal fissure
2015 CAT scan, EUA and sigmoidoscopy, 2 MRI scans - 4 hospital stays - severe to low pain
2016 Anal fissure - pain severe then moderate to low
2017 Return of moderate pain
2018 Physiotherapy, pain management
2019-20 Just living with it
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Re: 4 years of fissures

Postby patience_and_healing » 29 Nov 2017, 14:16

Really hope that the new place you've been referred to can help you out. Dealing with something like this for so many years sounds extremely difficult.
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.
Currently in pelvic physical therapy
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Re: 4 years of fissures

Postby dmcff » 08 Dec 2017, 09:39

And now I have an appointment with Alexis Schizas, the CRS who directs the Pelvic Floor Clinic at St Thomas's Hospital, London, on January 30. That's quick for the NHS - a bit of a wait, but it means I don't need to go private.
2014 Anal fissure
2015 CAT scan, EUA and sigmoidoscopy, 2 MRI scans - 4 hospital stays - severe to low pain
2016 Anal fissure - pain severe then moderate to low
2017 Return of moderate pain
2018 Physiotherapy, pain management
2019-20 Just living with it
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Re: 4 years of fissures

Postby dmcff » 11 Dec 2017, 09:49

It turns out that I'll see either Mr. Schizas or Mr. Andrew Williams, as they both work in the same clinic.

Have been experiencing a lot of pain and discomfort during recent days - not sure why, as I haven't done or eaten anything out of my ordinary routine. Today woke with burning pain, which died down a little in the course of the morning, but after a couple of BMs and a sitzbath got much worse again. Now trying to sit still, and am hoping that by doing so I will persuade the pain to return to bearable levels.
2014 Anal fissure
2015 CAT scan, EUA and sigmoidoscopy, 2 MRI scans - 4 hospital stays - severe to low pain
2016 Anal fissure - pain severe then moderate to low
2017 Return of moderate pain
2018 Physiotherapy, pain management
2019-20 Just living with it
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Re: 4 years of fissures

Postby dmcff » 17 Dec 2017, 09:13

I now have an appointment fixed with Mr. Andrew Williams of the Pelvic Floor Clinic at 9.40 am on January 30, and have also arranged for a car and driver to take me to and from the appointment - the car is courtesy of the SVCS voluntary community service. Its an early start - we set off at 6.30 am.

Although it feels better having made the arrangements to see the CRS, I'm still baffled by some aspects of this condition. Most recently, yesterday I felt relatively recovered from weeks of pain and discomfort, but woke this morning with what feels like a severe perineal rash - the kind of thing I used to suffer from when using Diltiazem ointment, but I haven't been using it recently. Not only did I have inflammation in my perineum, but also in my eyes and ears, with a roaring in my ears with deafness accompanied by toothache and/or earache. These symptoms have receded a bit - it's afternoon here now - but walking is still very difficult and painful.

I've had these rashes before, without DLT, and am not sure what sets them off. Something environmental, maybe, but it's still a mystery.
2014 Anal fissure
2015 CAT scan, EUA and sigmoidoscopy, 2 MRI scans - 4 hospital stays - severe to low pain
2016 Anal fissure - pain severe then moderate to low
2017 Return of moderate pain
2018 Physiotherapy, pain management
2019-20 Just living with it
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Re: 4 years of fissures

Postby dmcff » 19 Dec 2017, 14:26

I've been reading this thread:

viewtopic.php?f=32&t=8705#p107972
2014 Anal fissure
2015 CAT scan, EUA and sigmoidoscopy, 2 MRI scans - 4 hospital stays - severe to low pain
2016 Anal fissure - pain severe then moderate to low
2017 Return of moderate pain
2018 Physiotherapy, pain management
2019-20 Just living with it
dmcff
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Re: 4 years of fissures

Postby dmcff » 23 Jan 2018, 06:08

In a week's time I have my appointment at the Pelvic Floor Clinic in St Thomas's Hospital, London. I'm feeling a bit anxious about it, partly because it will involve a very early start - 6.30 am - and partly because I don't really know what the follow up of this appointment is going to be. I can't really see myself doing a regular 3-hour-each-way commute to the clinic, so have to wonder what the point of the appointment may be. But if the CRS can give me a definite diagnosis, after these years of being passed from one doctor to the next without one, then it will be worth it.

Although I was diagnosed - somewhat tentatively - with AF several years ago, the fissures have long since healed, and what I have now is a constant state of anal discomfort (like sitting on something sharp) that doesn't really alter much for better or for worse, The discomfort is worst when walking, best when sitting - not ideal, really. And at night I often get actual pain that keeps me awake.
2014 Anal fissure
2015 CAT scan, EUA and sigmoidoscopy, 2 MRI scans - 4 hospital stays - severe to low pain
2016 Anal fissure - pain severe then moderate to low
2017 Return of moderate pain
2018 Physiotherapy, pain management
2019-20 Just living with it
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Re: 4 years of fissures

Postby chachacha » 23 Jan 2018, 08:18

My fingers, toes and everything else are crossed tightly for you. I hope that you get some answers and something can be done to relieve you of your pain.
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: 4 years of fissures

Postby dmcff » 23 Jan 2018, 09:16

Thanks, chachacha. It really does feel as if the pain and discomfort have been going on way too long, but maybe I'll get some kind of closure from the London CRS. At any rate, I'll post my progress, or lack of it, here.
2014 Anal fissure
2015 CAT scan, EUA and sigmoidoscopy, 2 MRI scans - 4 hospital stays - severe to low pain
2016 Anal fissure - pain severe then moderate to low
2017 Return of moderate pain
2018 Physiotherapy, pain management
2019-20 Just living with it
dmcff
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Re: 4 years of fissures

Postby Fissurefrustration » 24 Jan 2018, 17:10

I’m keeping everything crossed for you. I’ve had fissures andlinked symptoms for around 6 years. I’ve been classed as healed but still get the sharp pains your describing. All it takes is a bm to be slightly harder and it sets me off again. My gp has no idea what to do with me so im self managing at home. Do keep us posted, I live in bath and would travel to London if it meant some idea of what’s going on with me.
Suffering since June 2013 :(

Methods tried:
Sitz Baths
GTN cream - awful migraines!
Manuka Honey / Coconut oil / Aloe
Vitamin E suppositories
Tablets (Fiber, Cod liver oil with vit A+D, Multi vits)my + tag excision X 2
Dilatiazem - so far so good.
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