Living with it

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Re: Living with it

Postby brokenbottom » 09 Mar 2016, 10:24

So sorry to hear that the pain is so bad Dave. I know how you feel - it's just desperate. Take to your bed with a hotwater bottle is all I can advise. Lie on your side and read something cheering. Hope it passes soon.
Suffered acute AFs since about 2010
2015 Chronic AF diagnosed
18/2/16 Botox (unsuccessful)
12/4/16 Lateral anal sphincterotomy and removal of polyp and two tags
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Re: Living with it

Postby dmcff » 09 Mar 2016, 10:46

Thanks, BB. Haven't tried the hotwater bottle yet, but have had a few hot baths, which helped a bit. What I can't work out is why the pain decided to return like this today, when I haven't changed my diet or medication or any other feature of my life. Seems that AF has a mind of its own. My two cats try to cheer me up, though they're a bit fed up with my groaning. :)

Now the problem is that I can't lie on my back except in agony, and lying on my side and front doesn't seem to be any easier. Don't know how I'm going to be able to sleep lying down in the near future.
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 recurring problem
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Re: Living with it

Postby Savaici » 09 Mar 2016, 19:47

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Re: Living with it

Postby dmcff » 10 Mar 2016, 08:43

Thanks, Savaici - yes, it seems that Davo went private. I'm wondering what to do next - today saw my GP, who examined me and discovered a new fissure - it was (and is) causing the agony. On GP's advice am discontinuing Movicol and lactulose, and substituting Fybogel instead. Options he offered me are few: basically either live with it, or have a LIS or Botox operation on the NHS with CRS William Garrett, who organized my NHS sigmoidoscopy at Medway Maritime Hospital (I live outside London) around this time last year. My GP didn't mention the private option at all. Maybe I should ask him about it.

Does anyone have a link to posts by forum members who have had LIS on the NHS? It would be interesting to compare their experiences with Davo's.
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 recurring problem
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Re: Living with it

Postby dmcff » 10 Mar 2016, 11:37

OK, I found quite a lot of posts by searching the forum for "LIS NHS". Should probably have thought of that first. These posts make interesting reading.
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 recurring problem
dmcff
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Re: Living with it

Postby brokenbottom » 10 Mar 2016, 12:23

Hi Dave. I'm currently wallowing in NHS admin hell. It's great that we don't have to pay money and all but you pay in other ways! I never saw the surgeon after my investigation under anaesthetic and botox. He'd gone home by the time I'd come round. He spoke to my husband, who maybe didn't ask the questions that I would have.

I'm down on the letter they give you after an op to have a follow up appointment after 8 weeks so I've been ringing to try to bring that forward. Finally got through to the consultant's secretary and they won't give me an appointment for 3-4 months! Didn't matter what I said she wouldn't budge. I guess I'm not dying so I'm low priority! All she suggested was going to A&E or my GP. Great.

So now I'm thinking I'm going to see if I can see someone privately. Don't know what that will cost but I've barely had a conversation with anyone professional who knows anything about this so far. And I'd pay good money for that right now! Also I'm a member of Benenden so I'm trying that route - they have their own hospital in Kent. Is that near you? Might be worth signing up with them? www.benenden.co.uk
Suffered acute AFs since about 2010
2015 Chronic AF diagnosed
18/2/16 Botox (unsuccessful)
12/4/16 Lateral anal sphincterotomy and removal of polyp and two tags
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Re: Living with it

Postby dmcff » 10 Mar 2016, 12:40

Thanks, BB, for the link. I am definitely going to read more about Benenden - yes, I'm in Kent - and may well join the scheme, depending on how things go with my fissure.

When I tried to go private, I found that I couldn't - the surgeon I had chosen to consult at a local private hospital decided to ship me off to Medway Maritime and have the same procedures done on the NHS! Which happened at once, that same day, amazingly, though I also had a similar experience to the one you describe: I never found out the details of my sigmoidoscopy, or the result of my CAT scan, and only got the information via my GP that nothing cancerous was found, and that there were some healed fissures. While I was grateful to receive immediate and free treatment, I was also slightly disconcerted by the informal way the whole thing was handled. And later, when I happened to meet the same surgeon during a stay in Medway Maritime, he told me that he didn't know the solution to my pain problem, and suggested that I use analgesic suppositories. I'm still not sure what to make of that.
Last edited by dmcff on 10 Mar 2016, 12:52, edited 2 times in total.
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 recurring problem
dmcff
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Posts: 342
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Joined: 07 Jul 2015, 08:49
Location: Kent, U.K.
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Re: Living with it

Postby brokenbottom » 10 Mar 2016, 12:44

It would be good it all the doctors involved with treating fissures could experience them - even just for one day! I'm sure they'd be a bit more helpful then!
Suffered acute AFs since about 2010
2015 Chronic AF diagnosed
18/2/16 Botox (unsuccessful)
12/4/16 Lateral anal sphincterotomy and removal of polyp and two tags
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brokenbottom
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Re: Living with it

Postby dmcff » 10 Mar 2016, 12:49

brokenbottom wrote:It would be good it all the doctors involved with treating fissures could experience them - even just for one day! I'm sure they'd be a bit more helpful then!


Yes, I think that is an exam that all doctors should be required to take. There's a communication gap between doctors and patients in this area.
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 recurring problem
dmcff
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Posts: 342
Topics: 37
Joined: 07 Jul 2015, 08:49
Location: Kent, U.K.
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Re: Living with it

Postby dmcff » 11 Mar 2016, 06:27

On the second day of my new fissure, I find that while moving around causes some pain, I can now sit and lie down without too much discomfort. What a relief! Now to see how long it takes for the fissure to heal - for me it will be an interesting experiment.
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 recurring problem
dmcff
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Posts: 342
Topics: 37
Joined: 07 Jul 2015, 08:49
Location: Kent, U.K.
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Gender: Male


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