Working with AF pain?

How do you guys cope at work?

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Re: Working with AF pain?

Postby Buttercup » 25 Apr 2017, 16:05

Thank you so much for all the info! Thatso really brilliant to know! My husband looked up the diltiazime price on line earlier and it's spot on with what you've said. No wonder they wouldn't give it to me. Tonight iv talked to a Dr after speaking with 111. She's saying I can take rectogestic with migraine it's not dangours but may be unpleasant until my body gets use to it. Iv actually used some tonight as I had paid for the prescription I'm in pain and despite. It did reassure me a bit speaking to her, if the head ake gets worst I will stop. It's not going ton be nice looking after a toddler with all day head akes but I'm not sure which pain is worst! Yes stI'll getting the spasms and pain for hours on end after a BM. It's such a shame people only take you more seriously when you use your title but we have to do what we have to do to get anywhere with it all. This forum is a brilliant way to vent and I can't thank you enough for taking the time to write back to me. It really means alot. All your advice and experiences are very helpful. I hope all works out with your work, keep me updated on that to. If you need to vent at all I'm all ears or maybe in this case all eyes! Again sorry if this is hard to read.
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Re: Working with AF pain?

Postby Mypoorbutt » 25 Apr 2017, 16:37

Hi I would seriously advise against going to
AnE I went once sat there in agony for 5 hours to be offered a Valium. They won't give you cream there as it isn't classed as an emergency.
The NHS do prescribe diliatzem I was offered it as first choice. You need to show them the above link as they are failing in their duty of care towards you. Phone your CRS get them to prescribe it you as it is easier for them than your local GP who has to account for their costs.
Yes this fissure nearly ruined my marriage as I couldn't get a day free from pain.
I really hope you get the cream.
Did you try the GTN I know someone on my crohns board who has migraines but still used GTN for a whole year although her migraines were food and stress triggered.
Good luck I really do feel for you
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Re: Working with AF pain?

Postby Buttercup » 25 Apr 2017, 18:00

Mypoorbutt, yes iv used the rectogestic this eve and it's helped with the pain and pressure a bit. I feel a bit dizzy but I'm laying down. That's a common side affect. You said it worked well for you didn't you. I'm willing to try anything untill I can get to see my doctor again. I will call in the morning though to see if I can get an emergency app. I It's good to know someone else with migraines used too. It's nice to hear that I'm not the only one that fissure has caused marital problems for although it's not nice and I hope everything's ok for you at the moment. It must be hard being in a relationship with someone's who's in constant pain. I can expect him to totally understand but just support. Thank you though so much for your reply. I don't feel so alone with it all now.
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Re: Working with AF pain?

Postby Bum_UK » 26 Apr 2017, 03:47

Buttercup, it sounds like calling 111 was helpful! I hope you're able to use the rectogesic cream without major side effects. As MyPoorButt says above ask for (well, demand!) diltiazem cream if the sideffects from the rectogesic cream are problematic.
How long has it been since you were diagnosed with the fissure?
I just realised I won't be able to see the CRS next week as Monday is a bank holiday and he's only at the private hospital on Mondays. I'm doing okay today with the burning right after the BM but it settles down within ten minutes or so. I can feel my hemmies when I sit and walk but again it's only mild discomfort.

MyPoorButt, it's good to hear that more people are offered diltiazem as first choice. Out of curiosity, did they offer it the first time your fissure was diagnosed? I only got some standard cream in 2010 and 2014. Then again, I wasn't in as much pain then as I was this time. I'm worried this fissure incident, in lack of a better word nightmare perhaps, has led to other issues including the hemmies that have surfaced. I also seem to have a fullness kind of feeling in my vagina but can't feel anything odd when I check. It might just be psychosomatic. I'll ask the CRS about it when I see him if i still feel it when I see him.

Have a good day ladies!
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Re: Working with AF pain?

Postby Buttercup » 26 Apr 2017, 04:20

Bum_UK the 111 call did help me. I have read on nhs website that rectogestic can be taken 5 or 6 times a day in smaller pea sized doses if head ake are a problem. I'm going to give it a go so at least iv tried it and like I say I'm despite. It was only diagnosed 5thave of April but the first serious spasms where absolute he'll in December. I saw a doctor thend who referred me to hosptial but good old nhs took from December until April for the appointment. My husband says I should be more demanding with it all and I easily accept the answers I get. So over the 4m it got so much worst. It's a shame you won't be able to be seen Monday, will that mean waiting untill following one? I also have a full feeling or bulging in my vagina. I thought it was just me and to do with the fact iv had a child but I do think it's probably all the swelling from AF? How long have you had AF and have you just been offered creams or the injections?
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Re: Working with AF pain?

Postby Mypoorbutt » 26 Apr 2017, 04:54

Hi BumUk yes I was offered diliatzem as a first option even though my first CRS couldn't even see my fissure...it was quite high up and very deep. Maybe it helped that I knew it couldn't be hems or anything else as I have had hems since I was 14 and have regular colonoscopies due to my crohns.
Buttercup I used to apply the smaller amounts more often especially when I was having multiple BMs I only ever got a banging in my head for 10 seconds max but then thankfully I don't suffer with headaches at all.
I'm sure the GTN will heal your fissure but If your still having spasms after the 8 weeks do not accept another course of cream without being put on the list for either Botox or LIS as the NHS does like to delay as much as it can
I didn't have a full feeling in my vagina just a dull ache but my fissure is posterior which is unusual in women so that might have been why.
Good luck
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Re: Working with AF pain?

Postby Bum_UK » 26 Apr 2017, 06:12

Buttercup, I'd written a long message to you when the board website crashed. I'm writing this in Notes and will copy and paste it to avoid losing the entire message again. It'll probably be a bit shorter though.

I think it seems like a good idea to try the rectogesic cream and see if it works. If it doesn't, go back to your GP and ask for (demand)a prescription for diltiazem cream.
Is there any chance your husband can come along to GP and hospital visits? It might also be helpful to have questions and/or talking points written down prior to GP and hospital visits.
I'm so sorry to hear that it took them four months to diagnose you. I'm surprised that your GP didn't manage to diagnose you. Did you have the pass glass sensation during BMs too? It's at least good that you've been diagnosed now.

I'll call Bupa tomorrow and ask for my authorisation code for the treatment and I'll book the CRS appointment then as well. Today's task is go back to my GP's to collect the referral and pop by Boots to buy more WaterWipes (they're amazing!) and collar my Laxido prescription.

A bit of background for my AF troubles. I self diagnosed an AF in spring 2007 and it took several months to heal. I was only in pain during BMs. I was okay until November 2010 when the fissure reappeared. I went to the GP as it hurt a lot during BMs and it bled a fair amount during BMs too. He diagnosed what he called a nasty looking fissure. He prescribed a cream and Movicol. It resolved within a few weeks. Finding Movicol made me reclaim my life again! I continued to eat lots of fruit and veg while using half to one sachet of Movicol per day. I was fine with maybe one or two minor issues per year until spring 2014. The Movicol gave me the runs after we started eating far healthier than previously. I swapped to Flybogel (or whatever it's called, it's a bulking softener) but it made my BMs bigger, as expected, but that made the fissure come back. I went to the GP who prescribed another cream and Laxido. The problems resolved within a few weeks again. I only had minor issues ones or twice a year during 2015 and 2016. I read that Movicol was on the FDA watch list in the USA and decided to swap to lactulose in late March this year. I could have asked a GP but I didn't and hindsight is 20/20... I used the maximum dose of lactulose as stated on the bottle. I had some big sticky BMs five days later. The pain started a few hours later and was relentless for the first few days. I went to the GP two days later and he prescribed diltiazem cream and Proctosedyl suppositories. The cream took four days to arrive due to the weekend. I was improving a bit before the cream arrived. I was in agony until around noon when the pain levelled off to uncomfortable but ok-ish. The cream made a real difference and I was basically only uncomfortable during BMs after around a week. It burns at the fissure site after BMs. I wasn't able to use the suppositories as I'm too tight despite using the diltiazem cream. I suspect it's a mental block but I can't seem to let go of it. A larger hem popped out after my fourth BM on Sunday (I have always had three plus BMs per day) and I went to the walk in centre to have it formally diagnosed. The GP popped it back in along with I suspect two skin tags and some smaller internal hems that had been out for a while. He sent me home with a Proctosedyl ointment prescription which I managed to fill at 3.55pm and the store closed at 4pm! I had a fart a few hours later and the pain was extreme. I think the skin tags and a few of the smaller hems popped out again. The bleeding stopped after that but the pain increased and I only slept two and a half hours on Sunday night. I started feeling better after lunch on Monday and both yesterday and today have been ok. I saw a GP yesterday and he said I have three or four internal hems on the outside as well as a small fissure. That's where I'm at now.

I'm a firm believer in as little intervention as possible but to be fair had someone offer d me LIS on day one or two after the most recent incident I'd gone for it right away. It'll be four weeks nice I re-tore the fissure tomorrow. I'm doing okay pain wise now. BMs are a bit uncomfortable and it burns at the fissure site until I've cleaned off, I use the WaterWipes to dab the area. I think I can feel them hems a bit when I sit down and I get a tad bit of chafing when walking but things are okay now.

I look forward to a chat with the CRS. I'm mainly concerned about the hems now as the bigger one really freaked me out. I want to avoid banding or surgery but will see what the CRS suggests. The GP I saw yesterday recommended banding but I'd rather avoid that if I can. I can cope with some minor discomfort and the CRS may be able to provide me with some advice on how to get the small hems back inside. I hope the Proctosedyl cream works and makes them smaller before I see them. Again, the problem is that I can't really get anything up there but only around the opening. I use that cream twice a day and after BMs and the diltiazem twice a day.

I would consider Botox if the fissure hasn't healed after around three months with the diltiazem cream. I'll have used it for three weeks today. It'll be interesting to see what the CRS recommends. I looked him up on Google Scholar and he's published a lot relating to both fissures and hems.
It's so nice to be able to vent here!
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Re: Working with AF pain?

Postby Bum_UK » 26 Apr 2017, 06:13

MyPoorButt, out of curiosity are your hems internal or external and do they give you a lot of grief?
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Re: Working with AF pain?

Postby Mypoorbutt » 26 Apr 2017, 06:21

After decades of IBS and crohns I unfortunately have 5 external and at least 4 internal hems. They only cause pain after I have multiple BMs and they ease off pretty quick nothing even remotely close to the spasms from a fissure.
My CRS advised against having them banded or removed as he believes it causes stenosis and due to my conditions they would probably return
I'm sure one your sphincter loosens your hems won't be as painful
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Re: Working with AF pain?

Postby Bum_UK » 26 Apr 2017, 06:43

Do your your internal hems ever protrude on the outside? Have you had LIS and did that resolve the fissure issues. I had to tall my mom about my butt issues (it's admittedly a little sad when I as a 44 year old is embarrassed to tell my mom about it!) when we visited her over Easter. I told her about the new hems too and it turns out at she had major problems with hems for quite a few years. She just popped them back in after BMs and they just resolved on their own apparently. It would be so much easier to get them back inside if the spincter hadn't been so tight.

It will be interesting to see what the CRS has to say about it all.
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