4 years of fissures

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Re: 4 years of fissures

Postby dmcff » 25 Jan 2018, 04:55

Thanks.

Part of the problem appears to be that in the U.K. there's a relative lack of knowledge among GPs about AF and its associated symptoms. The initial diagnosis is often "haemorrhoids", with little or no evidence to support it. And when one gets to hospital level the scanning procedures like sigmoidoscopy, MRI, etc. often seem to be rather hit-or-miss.

In my own case, the diagnosis is that the whole of the perineal area is continuously inflamed and tender, but no one is able to locate the cause of the trouble.

Anyway, hopefully on Tuesday I may get some long-awaited answers.
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 » 30 Jan 2018, 09:21

I finally had my appointment at the Pelvic Floor Unit of St Thomas' Hospital - the upshot of it all is that Mr. Williams diagnosed the problem: he says that the lactulose and macrogol I have been taking are doing nothing for the health of my perineal area, and he advises me to stop taking both of them, first the lactulose, at once completely, and then the macrogol after a week. He told me that most of the pain and inflammation I've been suffering for several years is traceable back to this cause, which involves excessive softness of stool.

I'm booked for a session at the Pelvic Floor Clinic with the specialist nurse in a couple of weeks' time, to go through exercises and other therapy.

It feels like quite a relief to obtain this diagnosis and additional support.
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 chachacha » 30 Jan 2018, 09:38

Very happy to hear that you now know what has been going on! Good luck with the therapy and I hope that you're back to your healthy self soon.
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 » 30 Jan 2018, 09:43

Thanks - it really is a relief to know what really has been going on all these years. Took a 4-hour battle with morning Kent and London rush hour traffic to get there, but perseverance paid off in the end.
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 patience_and_healing » 30 Jan 2018, 12:30

Excellent news dmcff! I hope you will have quick resolution after stopping both of those supplements. So glad to hear that you had good news from the doctor.
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 » 15 Feb 2018, 11:00

Today I had my first appointment in the Pelvic Floor Investigation Unit at St Thomas' Hospital, London. The first part of the session involved filling in a large number of "feedback" forms with questions about toilet habits, stool consistency, medical history, psychological attitude, and many other things. When the forms were completed, I saw a physiotherapist who took me through the outlines of the treatment, stressing that there was no single "magic" cure, and no specific name for the illness except "pelvic floor dysfunction".

I was told that I'll be seen at 6-weekly intervals over a period of 6 months, and was given some information sheets and schedules. I have to keep a one-week diary of what I eat and drink, plus a record of bowel activity during the same one-week period. Also, I have to use glycerine suppositories *after* bowel movements, to facilitate emptying of the bowel, and must use a footstool ("squatty potty"). I also have to learn deep breathing, and how to relax the anus during bowel movements.

The physio then examined me.

I'm fairly confident that this is going to work, though was slightly taken aback when the physio seemed uncertain about the precise nature of anal fissures, and kept referring to fistulae, which I definitely don't have. However, perhaps I misunderstood her.

I'll see how I get on with this.
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 Mypoorbutt » 15 Feb 2018, 11:06

Glad you now have a plan in place and they seemed thorough about getting your history and honest about the time it could take.
Good luck and please keep us all updated on your progress
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Re: 4 years of fissures

Postby dmcff » 15 Feb 2018, 11:21

Thanks, MPB. Yes, it looks as though this is going to take some time, so I'd better prepare myself for the long haul. :pray: Will keep posting updates as it goes along.
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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Posts: 329
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Joined: 07 Jul 2015, 08:49
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Re: 4 years of fissures

Postby patience_and_healing » 15 Feb 2018, 12:20

Good to hear that you've started the PT. I feel like every 6 weeks is not often enough to make good progress. My PT recommended being on a 2 week schedule until I made enough progress. Can you ask them to change it? I don't know how public health care works there. Perhaps they have a long waiting list.
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 » 15 Feb 2018, 12:40

Patience_and_healing, the letter I got says that the clinic is very heavily attended, so I doubt that it's possible to reduce the interval between PT sessions - it's the NHS, after all. There's also the fact that I live nearly 50 miles away from the hospital, so frequent visits there are not really something I could do on a regular basis. I'll see how I get on with the exercises and other instructions I've been given, and when I visit the physiotherapist again will ask about increased frequency of sessions - but I suspect the answer will be no.
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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Posts: 329
Topics: 37
Joined: 07 Jul 2015, 08:49
Location: Kent, U.K.
Has thanked: 63 times
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Gender: Male


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