Variability

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Variability

Postby dmcff » 24 Apr 2016, 03:00

I'm wondering why some days are relatively okay - yesterday went swimming in the morning, took a walk in the afternoon, felt almost pain free at times - and others, like today, are painful, with stinging and burning, and walking is out of the question.

There doesn't seem to be any reason for the difference, I haven't done or eaten anything unusual. Or perhaps it's the effect of the exercise?
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: Variability

Postby brokenbottom » 24 Apr 2016, 05:10

The variability is maddening isn't it? I keep all kinds of records of diet, drugs taken etc, trying to look for some sort of pattern but have never worked it out. The damn thing really seems to have a mind of its own.
Suffered acute AFs since about 2010
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12/4/16 Lateral anal sphincterotomy and removal of polyp and two tags
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Re: Variability

Postby dmcff » 24 Apr 2016, 10:37

I'm worried now that I might have an abscess - woke up with increased sharp pain, swelling and sensitivity around my anus. The intermittent pain has lasted all day, and I don't feel very well. But again, worrying about having an abscess is a typical symptom of stress, and I may well not have one. Yet the place where I sit is incredibly sore, and I don't know why that should be, so suddenly. Maybe I tore again during the night, But the prospect of going to A&E doesn't exactly fill me with joy, especially when there's no diagnosis of the trouble, and they might well send me home again straight away.

Having just ditched my old GP and not really moved to the new one properly yet, I feel I'm in an uncertain situation. Would rather hang on at home than go off into the unknown.

How are you feeling now after the LIS procedure?
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: Variability

Postby SurvivorX » 25 Apr 2016, 17:02

I had 6 operations in the area because of fissure and abcess/fistula - 2 of them LIS. 6th one looks like it finally drained the fistula and closed the fissure. However I have nerve damage from all the operations. sitting is ok but I get constant burning itching when I walk. I hope this gets better in time - my last operation was 6 months ago - I was told by ppl in this forum nerves affected from nerve damage need around 2 years to calm down. It`s hard not to lose hope sometimes but my family keeps me going. Please keep us updated on your situation also.
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Re: Variability

Postby suzyljank » 25 Apr 2016, 19:26

Hi, it's true that it takes about 2 years for things to settle down after anal surgery. Tomorrow will be 3 years since I've had double advancement flaps. What you need to understand is that after 2 years what you have is probably as good as it's going to get. These surgeries are to help with a fissure, or fistula or whatever you have but they do not guarantee you will be exactly like you were before all the problems started. You should be better though. If you've had multiple surgeries your risk of residual nerve damage goes up. Through trial and error I've found out what I can and can not eat, how much miralax I need to take daily and dilation once every other day is a must for me. Dilation really helps. I try to take a positive attitude (sometimes not easy) and be thankful that the awful pain I suffered with for over 8 years is so much better. It's not perfect but my doctor never promised perfection. He just told me honestly that he could help make things better. I still have IBS and last year I became lactose intolerant after a bout of food poisoning but I'm learning to adapt. Sending only good wishes to everyone Suzy
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Re: Variability

Postby dmcff » 26 Apr 2016, 03:23

Today I still have the rectal/anal pain, and didn't sleep last night, or slept very little. Am not sure what to do. I've been to doctors so many times with these fissures during the last eighteen months, yet nothing changes, it seems. When I did consult a GP again the week before last, she told me to stop taking amitriptyline - it's constipating - and for stool softening to take an increased dosage of Laxido (Miralax), up to 4 sachets a day. She did not examine me. I find that the Laxido seems to irritate my back passage, so am reluctant to increase the dose - yet I will have to do something.

During the night the condition seems to worsen, and during the daytime I have to try to navigate the pain. Sitting still seems to be effective, while walking and standing make it worse.

This morning I managed to go for a swim at the local pool. But afterwards I felt cold and shivery, and my head is muzzy, though it may be the effect of the 75 mg pregabalin (Lyrica) I'm still taking twice a day (maybe I should give it up, but it is supposed to counteract the pain, am not sure that it does)
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: Variability

Postby dmcff » 26 Apr 2016, 12:48

In the end today I saw another GP at the new practice - this one gave me a visual examination (it revealed nothing except an old fissure scar) and referred me to a CRS, though the referral will take some time to come through the NHS system. He has put me on 75 mg Pregabalin twice daily, plus Laxido and lactulose.

I'm still in a lot of pain quite a lot of the time - it's like going back to last year.
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: Variability

Postby brokenbottom » 26 Apr 2016, 15:57

Hello there dmcff! So sorry to hear you're having such a bad time. At least one thing I've never had is pain in the night. That's just awful if it's affecting your sleep too - hard to cope as it is! I do hope that your new GP is of more help. At least they've referred you to a specialist, that's a start.

I'm two weeks on from my surgery now. It's not the speedy fix I was hoping for but I'm certainly much better than I was. I have pain still but it's nowhere near on the same scale.

Fingers crossed that you, and everyone else on here, finds some relief soon from this. BB x
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: Variability

Postby dmcff » 27 Apr 2016, 03:51

Thanks, BB. I'm so glad that the LIS has reduced your pain - that's great.

Re my pain in the night - it's not so bad this year as it was last year, when I routinely did not get much sleep at all at nights because of the inflammation, burning and pain. My new GP has doubled my dose of Pregabalin - I think on balance that Pregabalin really does work to counteract pain, or at least reduce it. At all events, although I'm still plagued by inflammation and itching soreness, it's more bearable than it was.

Re the specialist: I think it may turn out to be the same CRS I saw last year - who, incidentally, didn't offer either Botox or LIS at the time. I'm still apprehensive about agreeing to have these procedures done. In the aftermath of yours, were you able to move and walk normally, or did you find that your mobility was restricted? I guess the reason I'm asking is that I live completely on my own, and don't have anyone to provide backup.
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: Variability

Postby brokenbottom » 27 Apr 2016, 06:33

I wonder why they didn't offer you Botox or LIS? What did they say was wrong with you? Those are the two things they do for AF so most odd not to be suggesting that!

I can see that being on your own after a procedure would be a worry. With the Botox I don't think the effect of the surgery was any worse than what you have to navigate day to day with an AF. But the aftermath of LIS was trickier at the start.

Still that's a bridge to cross when you come to it. I really hope you find something that helps soon.
BB x
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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