hi new here and have suffered for 2 and a half years

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hi new here and have suffered for 2 and a half years

Postby clairebear87 » 23 Apr 2011, 13:39

hi i'm claire, 23 years old. i have a 2 year old daughter, my fissure started a few weeks after a gave birth to her and have suffered ever since. for the first year my gp diagnosed me with piles (nobody ever looked at me) and gave me numerous pile creams which obviously didn't work. the pain was never that bad and i lived with it. then one night in January 2010 it got so bad my mum took me to a&e and the dr diagnosed me with an anal fissure. gave me a cream said it should heal etc. never did i was continuously going back and forth to my gp getting more and more different types of creams none of which have ever worked for me, during one month my partner was calling out for ambulances every week because i was in that much pain i would be screaming and couldn't lay down, stand up or sit down. the only thing that relieved me was a morphine injection by the paramedics which i would have to stay in hospital then. but i would just be left on the bed till i was able to go home. they gave me pain relief for it though- codeine phosphate 30mg and oramorph 5ml. which i took double prescribed amount. i finally got sent to see a consultant who specialises in this and i got fobbed off with the same creams i had used before and never worked. every 6 weeks i had to go back.
they finally decided to bring me in as a day case under general anaesthetic to have a proper look inside me. when i had it done and woke up they said they found nothing and just sent me home. which was upsetting. had more visits to the consultant at the hospital, the last was september 2010 where a dr looked at me said she couldn't see a fissure there anymore and i wouldn't need to go back.i was fuming i knew i still had the fissure and tried to explain that i was still getting the pain and she just replied that i may do. so i lived with it.
january 2011 it was getting worse again i was a waitress working evenings but would have to take so much time off work cos i was in agony. i went back to my gp asking him to refer me again, and got an appointment at hospital a month later. the dr there gave me another lot of the same creams. went back 6 weeks later again and the dr said that he thinks i should be brought in as a day case again like last year which i thought was pointless cos they found nothing and it didn't help. he also quoted from the head consultant that "he doesn't think they can do anything for me" which made me angry. i know there is surgery and other treatments i've found on the internet. then i got a letter with the head consultant (who i've never met before even though i have been a patient of his for a year) wanting to see me personally before i get brought in again. so waiting nervously for that.
a month ago i quit my job and am now just a stay at home mum because i am suffering every other day and i have to hold on until my daughter is in bed otherwise i can't do anything, and i have to be at home or i would be stuck. i have to take a bath everytime i go as well as the pain relief, but i might possibly be pregnant again so i cannot take the pain relief anymore and just don'r know what to do with myself. after suffering 2 and a half years and no relief from it i've completely had enough.
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Re: hi new here and have suffered for 2 and a half years

Postby spamfree1232002 » 23 Apr 2011, 14:51

Hi Claire - and welcome to a group of friends who understand, sympathise and will make suggestions.
I'm sorry to hear you're having such a rough time of it - many of us have been through a dark place. In with all the things that have been tried, have you run a full course of GTN (glyceryl trinitrate - also known as nitro)? And if that didn't work did you then run a full course of diltiazem or nifedipine?
In terms of pain relief I had a sort of foam spray when I had an AF a couple of years ago (sorry: I can't remember the name - can anyone else help please?) and this time around I've been prescribed some lidocaine. My GP also said try ibuprofen or paracetamol.
Like you I find warm baths a help - and I'd also recommend hot pads (gels, cherrystones, whatever). I'm in the same sort of geographical area as you, and after a couple of sympathetic rounds with my GP (nitro and lactulose) I was referred to Southampton - to Royal South Hants; Lower GI - Colorectal Surgery - who gave me a jolly good listening to. Because I can, at bad times, be a bit distracted by the pain I made a brief note of my history, symptoms etc. and took that with me - that seemed to help focus things in the direction I wanted. If you're going to see the head consultant that sort of approach might help.
I was lucky with the wait to see the specialist in that they offered me a cancellation so I didn't wait the usual 6 weeks - you might want to ensure that they know if you'd be willing to take a cancellation, just in case an opportunity comes up.
We discussed all the options and decided to have another go with diltiazem (I tried it once before but I probably didn't run with it for long enough) and a change from a lactulose to a macrogol based laxative/stool softener (I'm using Laxido - seems to be working a treat). They eliminated other possibilities as far as they could, and they carried out a brief examination - up to the point when I said 'whoa there'.
They were also clear that the next options would be surgical: firstly Botox, and then if that failed the final option would be LIS. I was told these have minor risks of incontinence (temporarily for the Botox and permanently for the LIS) and so we decided to give the conservative methods another go. You'll find threads here for the surgical interventions and advice from those who have had them.
After a few episodes over a couple of years, and especially following a painful winter just gone, things are now progressing for me - so I do hope the same will happen for you soon. I'm sure you're following all the other advice - there's plenty of it on this site: high fibre diet, suitable stool softener and/or laxative, plenty to drink (but little alcohol or caffeine), exercise helps some people, and there are various dietary supplements that some recommend - from magnesium to wheatgrass - again: plenty more details on this site.
There are also quite a few women who seem to suffer AFs around pregnancy time - I'm sure some of them will be able to give you the benefits of their experience as well.
So we do feel your pain here; please do try to stay strong and if there's anything else we might be able to do to help - by way of advice, discussion or sharing - please let us know.
Last edited by spamfree1232002 on 24 Apr 2011, 03:19, edited 1 time in total.
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Re: hi new here and have suffered for 2 and a half years

Postby clairebear87 » 23 Apr 2011, 15:13

thank u, yes i used both gtn and dilitizim niether worked for me. i am definitely pregnant now so i won't be able to take my usual pain relief, well according to the drs at nhs direct i can take them but i still don't wanna take the risk! i had been taking dulco ease as the other laxatives didn't agree with me. even when i have tummy upsets and suffer with diarrhoea it still doesn't ease it so god knows what helps! i am very happy to be pregnant as have been trying a long time but i'm also annoyed as i could have been offered surgery when i see the consultant which i won't be able to have now! :(
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Re: hi new here and have suffered for 2 and a half years

Postby Deleted User 579 » 23 Apr 2011, 15:26

Hi Clairebear - I am so sorry that you are suffering right now. Spamfree is right that there are lots of folks here who can offer great advice. And you can read through the older posts, there are really good tips and inspirational stories as well. Hon, you've gone through so much for so long I completely understand how you must be feeling. Here in Canada the wait times are insanely long to see a specialist and this is not the kind of thing that you can live with for a long time without it taking a heck of a lot outta ya. I really hope that your appointment goes well and that you get the diagnosis and treatment that you need. I think you should also ask about whether or not you can still get an LIS even though you're pregnant. I don't know about this myself, but other mothers here got pregnant after getting an LIS - they had c-sections, though, to avoid further damage to the sphincter. The only thing might be the postop painkillers. I could be wrong here, so maybe some mums can chime in.
Anyway, I think you might want to explore all your options and don't let anybody pat you on the head and send you away - I know that's really hard and it happens to me too; but if someone is willing to listen to you I definitely think you should make the most of it!
Definitely post again with news and/or if you need any advice or moral support. Image
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Re: hi new here and have suffered for 2 and a half years

Postby spamfree1232002 » 23 Apr 2011, 16:12

Hi again Claire,
Wonderful news that you're going to be a mother again - congratulations. As you say you'll want to take advice on the safest options - and sometimes you'll be pleasantly surprised what may be completely safe (and I'm sure you weren't up for unpasteurised cheese anyway).
Hopetoheal is right about the success stories - and some of them seem to just happen - a change of medicine or diet, a new specialist who recommends Botox or LIS...
A couple of weeks ago and on advice from the specialist I changed from a lactulose to a macrogol-based laxative and that's better for me. And there are a few others here who report that (there are not many opportunities for using the phrase: "the shit-shifter of choice" but this may be one such!). So if you haven't tried one you might want to check the safety in pregnancy.
By the way I'm not sure if it's significant but I've had two different diltiazem creams; both 2% and it may be coincidence but one seems more effective than the other. The first (less effective for me - but that's not exactly an extensive double-blind placebo-controlled statistically significant sample!) was not as smooth, took an age to arrive via Boots, the expiry date was only a couple of weeks after I received it (before I finished the course!) and it didn't say keep in a fridge. The second lot (Thame Laboratories) is smoother, has a longer expiry date, says to keep it in the fridge and for me after a couple of weeks, now seems to be more effective. However I must emphasise this could be totally insignificant and there could be no causal link whatsoever.
As hopetoheal says do quietly persist in trying to finding someone who is more sympathetic - there are certainly plenty of them in the NHS. It must be difficult for someone who has not had an AF to imagine what it is like, but the specialists see enough people with the same symptoms and details to realise that it's for real. You might even be treated with more respect and sympathy given that you're pregnant... Do you have a date for the consultant yet?
Keep us posted; good luck.
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Re: hi new here and have suffered for 2 and a half years

Postby New mum » 26 Apr 2011, 18:11

Hi Claire,
So sorry to hear you are going thur what i did. i also got mine after the birth of my daughter 1yr ago and had a LIS 5months ago. now waiting to heal to try for baby number 2.
I know some doctors say its safe to have a light general when you are past 3 months pregnant or even they could do a light sedation or something have a chat to your doctors coz u could still have a LIS done while preg maybe. also dont want to butt in but have u thought of having a c-section so you are not putting pressure on ur butt?
how are u feeling now?
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