4 years of fissures

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4 years of fissures

Postby dmcff » 22 Nov 2017, 12:52

It's now nearly 4 years since I was first diagnosed with AF. Although the level of pain has dropped a bit since the first 2 years, which were real hell, I still have a lot of discomfort, both sitting and walking, and also at night, and am going to see a CRS tomorrow to discuss options. For a long time I've put off the decision about what to do, but having changed GPs and not having made much progress, I feel I will have to bite the bullet and pay attention to what the CRS tells me. So far no CRS has recommended any intervention beyond creams, ointments and Movicol - but perhaps tomorrow I will get a different answer. It's more than a year since I last visited this specialist, so I will be curious to hear what he says.

David
2014 Anal fissure
2015 CAT scan, EUA and sigmoidoscopy, 2 MRI scans - 4 hospital stays, severe pain until August, then moderate to low pain
2016 Anal fissure - pain severe then moderate to low
2017 Return of moderate pain
2018 Now in biofeedback treatment
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Re: 4 years of fissures

Postby chachacha » 22 Nov 2017, 14:35

My experience has been that a CRS's recommendations are often based on how they think that the patient is coping, not just how long they've had their fissure. If you make fairly light of your symptoms, and say that you're managing "okay", they may just recommend more conservative treatment. If you tell them that you are at your wits end, unable to bear the pain for another day and cry right in front of them, they will be more likely to book you in for a LIS ASAP.

So if you want to sway their opinion in one direction or the other, you shoiuld act accordingly.
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 Nov 2017, 03:27

That could work, I suppose. Though when I tried it at A&E a couple of years ago, the doc made a point of refusing to examine me, told me he thought the trouble was in my mind, and suggested therapy. With this kind of pain it's hard to behave in a way that communicates itself to the doctors so that one gets the right treatment.
2014 Anal fissure
2015 CAT scan, EUA and sigmoidoscopy, 2 MRI scans - 4 hospital stays, severe pain until August, then moderate to low pain
2016 Anal fissure - pain severe then moderate to low
2017 Return of moderate pain
2018 Now in biofeedback treatment
dmcff
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Re: 4 years of fissures

Postby chachacha » 23 Nov 2017, 09:59

And isn't it worse that we should even have to? I think that an ER doc wouldn't be as good a judge as your own CRS though. Good luck!
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 Mypoorbutt » 23 Nov 2017, 11:07

I agree with CCC that it often depends how you act but also on the CRS. I had two totally refuse to do LIS but another who really listened and was sympathetic, if your on the NHS you will probably be offered Botox first. Make sure they know you have tried everything else and are in pain every day. A&E are a total waste of time for a fissure as they have no understanding of the pain it can cause. It takes a few years of being a CRS to figure out a little cut can actually ruin a life. I had a GP that was amazing but that was only because he had had a fissure he referred me and got me seen with two weeks but then the selfish man moved to France with his new wife lol.
Really hope they listen to you and give you some help
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Re: 4 years of fissures

Postby dmcff » 23 Nov 2017, 12:16

I just saw the CRS - at KIMS Hospital in Kent. I told him I have pain and discomfort while walking, sitting, lying down. After a quick examination he said I have leakage (which I do), and recommended sitzbaths and/or showerhead (the former I do about 5 times daily). But then he scanned through my 3 years of notes and said that I have a recurrent cycle of pain with improvements and relapses, that refuses to go away, but that he was stumped, couldn't suggest an answer. Said he was sending me to St Thomas's Hospital in London for anal manometry and other tests, but I would have to wait 6 months for the appointment on the NHS. I just realised he has referred me to Mr. Schizas (who specialises in pelvic floor pathology) at St Thomas's. Don't know when I'll hear anything, though.

Now I will have to think if I want to go private. The CRS said that whatever it is I'm suffering from, it can't be treated with GTN, or even Botox. It's something he doesn't understand, and has no experience of.

A bit strange, if you ask me.

Sorry to hear about the behaviour of your GP, MPB - but these days few things in the field of consultative medicine surprise me. :cry:
2014 Anal fissure
2015 CAT scan, EUA and sigmoidoscopy, 2 MRI scans - 4 hospital stays, severe pain until August, then moderate to low pain
2016 Anal fissure - pain severe then moderate to low
2017 Return of moderate pain
2018 Now in biofeedback treatment
dmcff
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Re: 4 years of fissures

Postby Mypoorbutt » 23 Nov 2017, 14:35

Oh it’s great you saw someone and that you have a referral, lots of CRS will do a private consult usually arounfpd 30 mins and then will transfer you onto their NHS list the consult cost around £250/300 that’s how I found my amazing CRS.
I know a mr Windsor works in London and a few members of this site have given him great reviews.
I think with him you could at least get an explanation of what he feels is wrong and probably a lot more info than what you have just been given by that surgeon. Did he even say if he saw a fissure or any healed fissures.
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Re: 4 years of fissures

Postby dmcff » 23 Nov 2017, 14:52

No, he said the leakage was preventing him from seeing very much at all. But on looking through my 3+ years of notes, he said he thought the problem was something other than fissures - he didn't know what. He isn't the first doctor to express skepticism about fissures being the trouble - two other CRS and my former GP were also of the same opinion.

I'll have to think this through carefully. I'm cautious about immediately going private again - I did that before, and although I got a whole raft of tests done on the NHS (the private CRS referred me back there), there were no conclusive results, and though all the tests came back negative, I still had the ongoing pain.

Perhaps Mr. Windsor would be the best choice. Though if the problem is not fissures or hemorrhoids, but something pelvic floor-related, then maybe it would be better to see someone like Andrew Williams or Alexis Schizas at Guy's/St Thomas's.

I'll have to give it some thought.
2014 Anal fissure
2015 CAT scan, EUA and sigmoidoscopy, 2 MRI scans - 4 hospital stays, severe pain until August, then moderate to low pain
2016 Anal fissure - pain severe then moderate to low
2017 Return of moderate pain
2018 Now in biofeedback treatment
dmcff
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Posts: 207
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Re: 4 years of fissures

Postby dmcff » 24 Nov 2017, 06:12

Now I see that Mr. Alexis Schizas also works at the London Clinic:

http://www.thelondonclinic.co.uk/consul ... is-schizas

like Mr. Alastair Windsor:

http://www.thelondonclinic.co.uk/consul ... ir-windsor

Yesterday I was referred to Mr. Schizas at Guys/St Thomas's under the NHS - but was told that the waiting time might be 6 months.

Would it make more sense to see Mr. Schizas at the London Clinic, on a private basis? Probably. I have to decide.
2014 Anal fissure
2015 CAT scan, EUA and sigmoidoscopy, 2 MRI scans - 4 hospital stays, severe pain until August, then moderate to low pain
2016 Anal fissure - pain severe then moderate to low
2017 Return of moderate pain
2018 Now in biofeedback treatment
dmcff
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Re: 4 years of fissures

Postby dmcff » 25 Nov 2017, 03:39

So now I have the persistent inflammation and pain/discomfort that I've had with varying degrees of intensity for nearly 4 years, no definite diagnosis of what's causing the trouble - the theory that it's anal fissures was dismissed by the CRS I saw on Thursday - and quite a lot of uncertainty as to what to do next. I've had nearly all the tests that are normally prescribed for fissures, and must have been examined several dozen times, the results of the tests always being negative.

I'm inclined to go and see Mr. Schizas and have the anal manometry test done, but am wary of further intervention in my anus and rectum, which are inflamed and swollen. It's a bit of a dilemma - I keep thinking that maybe it's better just to soldier on and put up with the discomfort. Every time I'm examined I suffer from an increase in swelling and pain, and that's the situation just now. I'm waiting for the trouble to die down and return to its usual level.

David
2014 Anal fissure
2015 CAT scan, EUA and sigmoidoscopy, 2 MRI scans - 4 hospital stays, severe pain until August, then moderate to low pain
2016 Anal fissure - pain severe then moderate to low
2017 Return of moderate pain
2018 Now in biofeedback treatment
dmcff
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Posts: 207
Topics: 27
Joined: 07 Jul 2015, 08:49
Location: U.K.
Has thanked: 58 times
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