Working out what to do

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Working out what to do

Postby dmcff » 16 Mar 2016, 09:00

So I saw my GP today, and he basically told me there's not much more he can do for me. He has referred me to a CRS at the local hospital, but on the NHS that referral may take months to come through. He also mentioned the possibility of going private, though I have tried that before, last year, and was told by the CRS I saw then that there wasn't much he could do to relieve the fissure pain, though he did arrange for tests (sigmoidoscopy, CT scan, MRI, etc), which I had, and were clean.

My GP mentioned the fact that my calprotectin count, taken after a stool test last year, was quite high - 343. But I dont know what to do about this, or if the high count means that Crohns or some other disorder may be causing the fissures.

I suppose what I need to do rignt now is to calm down. Yesterday afternoon I took 5mg zolpidem (ambien), as well as 10 mg for sleeping at night, but I think it may be constipating me. I clearly have anxiety issues, and those are making the situation worse.
Last edited by dmcff on 20 Mar 2016, 06:56, 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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Re: Working out what to do

Postby dmcff » 16 Mar 2016, 12:24

Well, in the end l called my Lifeline, and they said I should call 111 so I did, and spoke to a health advisor, who told me to call my doctor's surgery with a specific request for pain relief. So I did and managed to get a message to my GP, who called back via the receptionist to say that I should use the morphine he prescribed for me last year, and double the dose of laxative to counteract the constipating effects of the morphine. He will also definitely be writing to the colorectal specialist.

In the meantime, mercifully, the fissure pain has gone down a bit.
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: Working out what to do

Postby dmcff » 20 Mar 2016, 07:04

Still having a problem with the pain - managed to go out and do the grocery shopping this morning, but at the cost of a big increase in pain. The point is, life has to go on - one can't just collapse because it's painful. But it's hard, sometimes. I could get the groceries delivered, but I wanted to be active and do something. While I'm waiting to see the CRS, I need to be proactive.
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: Working out what to do

Postby dmcff » 22 Mar 2016, 08:37

Still having problems managing the pain, which comes and goes without apparent cause. I recognize that I have a big fear of surgery. Called the CRS's office, but when it came to actually making an appointment chickened out, said I wasn't sure about the date, maybe it should be after Easter - secretary was naturally impatient - in the end I had to say "Sorry, I'll have to get back to you later."

As a sign of my indecision, I re-started Diltiazem this morning, and found that it doesn't sting me any more. So perhaps that's the way to proceed, after all my rude remarks about Dilt in the past. I also found that a Proctosedyl hydrocortisone cream with lidocaine didn't sting and burn as much as I thought it would, so perhaps I'll persevere with that, too.

I need to stick to one plan of treatment - either conservative, with creams and ointments, or surgical, which will mean bothering the CRS I already saw last year, and braving the consequences.

Part of the reason for my indecision is some remarks by my GP at a recent consultation. When I mentioned Botox and LIS I said "they'll probably have to knock me out for those", and my GP said "No, they probably won't because of the risk involved." When I asked him what he meant, he said: "The risk is that you might die on the operating table, and no surgeon would want to take responsibility for that."

I found these remarks strange. My GP seemed to be implying that because I'd rejected Diltiazem I had left myself with only the surgical option, and being a reasonably healthy 71-year-old that option was likely going to be denied to me because of the afore-mentioned "risk". Or was this my GP's sense of humour? If so...

I also currently have a problem with medications: four weeks ago, when I first got the new fissure, my GP prescribed 5mg zolpidem (ambien), something he has also done in the past. When the pain got bad recently, I started occasionally taking one zolpidem in the daytime, as it killed the pain and relaxed the muscles "down there."

But now the GP says I have to come off the zolpidem altogether, and switch to Seroquel (Quetiapine) 25mg. This is a sudden change, and I'm not sure I can make it at the same time as I'm juggling with the conservative methods/surgery dilemma. Seroquel is a powerful anti-psychotic, and its off-label use as a sedative/hypnotic is frowned on by some in the medical profession.

One thing that's sure is that this condition definitely contains a psychological as well as a physical dimension. The worst aspect of it is the nagging, constant pain, which makes it hard to take cool and rational decisions, and leaves me, at any rate, in a state of indecision and semi-crisis.
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: Working out what to do

Postby Benny Lee » 22 Mar 2016, 09:07

Hi dmcff. I was on zopiclone for four weeks, and was eager to come off. I had a two month anxiety attack and couldn't sleep! Anyway, the doc at one point gave me quetiapine. It was horrid, very crude, and I needed to drink some beer on top of it to get some sleep anyway. In the end, what conquered the anxiety (largely) and insomnia for me was getting to six weeks of use of sertraline (SSRI antidepressant renowned to be good for anxiety). Up until that six weeks I was hopeless and the doc kept throwing alternatives to zopiclone at me (tho he didn't mind me persisting with the zopiclone until the SSRI worked), such as: amitriptyline and mirtazapine. Both these antidepressants get you to sleep but hey, guess what, they have an anticholinergic effect, which means constipation! So not good for AF sufferers. Maybe if u promise your GP not to take any zolpidem in the day, u could remain on it for a while, or ask for some valium for daytime use. What is needed is a return to our lovely normal drug-free selves; AF aside, sertraline (eventually - and it was an amazingly tough journey, insomnia got worse for weeks) allowed me to not worry about sleep anymore and, so, sleep. Like most people, I'd prefer not to be on anything tho.
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Re: Working out what to do

Postby dmcff » 22 Mar 2016, 11:04

Hi, I'm glad to hear that an SSRI worked for you. Unfortunately I react badly to them (had a particularly nasty experience with Seroxat [Paxil]). I will be seeing my GP again soon, and will bring up the subject of alternatives to zolpidem.

The daytime zolpidem has only worked up to a point - when its effect wears off I usually get a bad muscle spasm.

Yes, it would indeed be best if we could manage without these chemical walking sticks!
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: Working out what to do

Postby dmcff » 24 Mar 2016, 05:38

Saw the GP again - the first thing he said when I entered the consulting room, before I had even opened my mouth, was "I'm not prescribing any more sleeping medication". He also refused to prescribe anything diazepam-like. So I will just have to go cold turkey. Don't know how that is going to be. I felt rather humiliated, particularly as he kept smiling brightly.

Not that another doctor would have done any differently. Taking sleeping tablets during the day to counter the pain, as I was doing, is no way to go.

But it's his cold bright manner of refusing me that I find hard to deal with. Not much communication there.

I have an appointment with a CRS on April 4. The appointment is at a private hospital about 10 miles from here. I'm anxious about it, but will need to cope with that.
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: Working out what to do

Postby dmcff » 24 Mar 2016, 13:08

Excruciating pain in the pm. Called 111, was even thinking I would have to get down to A&E. My GP says he has exhausted all of his pain resources: "sometimes there is just pain" (meaning one has to suffer it).

Pain now slackening off after some 6 hours of it.
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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Re: Working out what to do

Postby dmcff » 27 Mar 2016, 07:12

I'm still having setbacks on my fissure journey. The recent flare shows no signs of abating, and is even getting worse. But after that rather disastrous visit to my GP, where he basically told me to go away and suffer, I'm concluding that the road to recovery has a lot to do with pain management. In my case, it's also about anxiety management. The pain conquers the anxiety to the extent that I take the steps that would lead to having Botox and/or LIS, contact the CRS - but then am too anxious to actually have the procedures. At the moment I'm stuck - maybe I need to change GPs, and register with a practice where there is more than one doctor.

The pain is also triggered by anxiety - it's a vicious circle, one that needs to be overcome. Maybe an antidepressant like imipramine would help - I'm allergic to SSRI and SNRI ADs.
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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Re: Working out what to do

Postby dmcff » 29 Mar 2016, 09:40

After an almost pain-free day, at night, sharp sudden pain.

I'm leaving my GP after nine years and transferring to another practice where there are several doctors to choose from. The paperwork will take several days to complete, and the transfer itself will take up to a month, I'm told.

I cancelled Monday's appointment with the CRS, as my GP's referral letter - a copy of which I was given - was just too personal, negative and critical of me because of my anxiety about treatments. I feel that one's doctor ought to be supportive, not hostile. Perhaps I can be referred to the same CRS - or another - by one of the doctors at the new practice.

In the morning went swimming at the local pool, and found it relaxed me and eased the pain for a while.

But by late morning/early afternoon the pain was back, sharp and continuous.
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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