New - 4 and half years so far

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Re: New - 4 and half years so far

Postby spamfree1232002 » 25 Feb 2011, 13:40

Hi Hopeful Lad,
And welcome from another newbie 50's British male sufferer. I've had just a few longer term fissure problems, recurring occasionally over a few years. Normally I'm an analytical, logical, relatively calm and well-balanced sort of person - but recently had periods of depression brought on by the fissure, and not really mentioned it to anyone. When I recently posted here I got the same invaluable sympathy and tips as you're getting - and my mental health has improved (I was tempted to try some sort of poor word play about getting it out here on the forum being cathartic).
I don't have the complications you've had, and you do seem to be covering most of the usual bases: diet, stool softeners, water, exercise, healing and pain alleviation. I'm scared of operations so trying to treat my AF conservatively by all of these methods, and just recently the onslaught of all of these seems to be easing the pain. When my BMs have been painful and I've been scared to go I have found myself holding back. Perhaps like you I've often had more pain a few hours after a BM than at the time, and never been sure why that might be. In the past mine has just eased and then disappeared and I've not been sure exactly what has helped that - or indeed what has brought it on again...
On the possible complications of LIS: as I've said elsewhere on this forum I sometimes worry that we hear more from those who suffer continuing problems than those who are cured. It is understandable that those who have LIS and improve probably don't have the motivation to carry on posting on this sort of group much - they just get on with their lives. On the other hand those who are not sorted out are probably more likely to engage us with their problems. I'm sure you will have seen the reviews - for instance http://www.origynrx.com/technical_reviews.asp which generally show good success rates for LIS. If you do go for the LIS and it works - please would you be sure to let us know.
Presumably you are a hot (sitz) bath, and hot pad user (I sit on one at work - and I'm fortunate I've got great work colleagues and bosses who are understanding). As an aside we've just recently got a new car and we've got heated seats - if you ever get the chance I'd recommend that option (an essential part of the option pack for AF sufferers!).
Do you manage to get enough exercise (one of the few things you haven't mentioned which I'm led to believe can help - and seems to help me)? I'm on GTN at the moment and awaiting some Diltiazem from the pharmacists - any tips on Diltiazem please?
So you've got good friends here, lots of understanding and sympathy and plenty of advice. It does strike me that there is a wide divergence in the exact symptoms and treatment for AF, and trying various combinations is the order of the day and that has also helped me feel I'm doing something - rather than just suffering.
Keeping busy at work or absorbed in something else at home has also helped take my mind off the pain and hence helped me feel better.
So please stay strong and positive - I'm sure you'll beat it: you've clearly got the tenacity and done the research.

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Re: New - 4 and half years so far

Postby Hopeful lad » 26 Feb 2011, 05:38

Savaici
Thanks very much for your support and good wishes.
This forum is a really great help and although I've read tons of stuff on the web over the last 4 + years (obsessing with it really!), there is a huge amount for me to read and learn here.
I visited here a few times in the past before joining but was always trying to read several different websites at the same time (!) so didn't at first realise that this forum was so extensive.
Even more important is the support of people who are in a similar position to me, and have similar feelings.
I really appreciate your words of support and wish you all the best.
Ralph
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Re: New - 4 and half years so far

Postby Hopeful lad » 26 Feb 2011, 06:17

Hi Spamfree
Over the years I've lost track a bit of the times I was 'relatively' symptom free, and managing to keep the stool soft (prob too soft with too much magnesium oxide - and then you worry about stenosis in the medium term - though my CRS said not to worry about that), and then all of a sudden the af would open up again. All the time I would be using GTN/NTG (Rectogesic), or Diltiazem, and usually vaseline as well.
(Incidentally my CRS told me over 4 years ago that I could use both the topical nitroglycerin and the Diltiazem at the same time since they work in different ways and I used to do that before I had my first large doses of botox for 'anismus')
As others have posted before - sometimes you can't figure out why things go wrong- perhaps a harder stool amongst the 'toothpaste' who knows!
When I first got this problem about 4 and half years ago I didn't have a clue what it was and got to the point where I forced myself to go despite the razor blade/broken glass effect.
Like alot of people I ended up losing weight quickly -40lbs- though to be honest losing the weight in itself wasn't a bad thing, just the speed of it and the cause!
I guess I've been lucky because I don't miss most of the things I cut out of my diet. And I still eat - in moderation -most of the things I like eg occasional desserts and of course chocolate! (which I find is laxative, though some people find the opposite).
Funnily enough recently I found that I became temporarily asymptomatic if I had two large gin and tonics at lunch time! The pain in the rear while I was sitiing down would disappear. Trouble is you can't drink
gin all the time! And I also had a duodenal ulcer in the past and have acid reflux which gives me a cough so I can't keep drinking (shame!).
But then alcohol is a muscle relaxant (funnily enough so is chocolate, I believe, but you just can't eat enough of that!) so perhaps on top of the botox and rectogesic - who knows?
I guess I'm rambling on a bit so just quickly re your other points.
I agree that if your LIS is eventually successful most people just want to get on with their lives and put the rest behind them so you don't usually hear from them.
Who can blame them.
From the little I've read here so far, that's normal - but I admire them when they come back to help others as well.
I don't find sitz baths do much fo me - perhaps its because my CRS told me I've got a 'recessive' anus (!) which is why he can't see the fissure. However I do find a hot water bottle overnight can help sometimes, as long as you don't burn yourself!
I try to go for a walk for 20 or 30 minutes a day minimum.
I still use the GTN/NTG (Rectogesic) every day before a bowel movement. I don't really get headaches now, perhaps because I've used it for so long (also I don't use the full 2.5cm/ 1 inch as I've still go the botox in me).
The Diltiazem is good too, but instead of headaches you can get terrible really aggressive anal itching (sorry!), which has occasionally made me stop using it. I think these side effects are mentioned in quite afew other posts in the forum.
Another point wothr remembering is that GTN/NTG (Rectogesic) is only effective for 90 minutes then it's worn off. So it's only going to relax your internal sphincet for that long. (Told to me by my CRS and confirmed online in research I've read).
Whereas Diltiazem I believe can last several hours - maybe 3 or more - sorry I've forgotten the exact time I read. Anyway it's effect lasts apparently quite a bit longer. Perhaps it may be mentioned in some other posts on the forum which I haven't seen yet.
Anyway many thanks for all your help and support, and like everyone else I am trying to 'keep my chin up'.
All the best to you
Ralph
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Re: New - 4 and half years so far

Postby happyass » 26 Feb 2011, 07:45

i miss a good gin and tonic!!!!
and cape cod!
great info in your post up above!
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Re: New - 4 and half years so far

Postby Hopeful lad » 26 Feb 2011, 08:30

Spamfree
Sorry I didn't reply to all your points in my last post (also apologies for the spelling mistakes).
Yes I have used heated seats in a car, but my current car hasn't got them unfortunately.
On the other hand I always use a foam or similar cushion on top of the seat when driving to try to reduce the discomfort which builds up. Fortunately I rarely have to drive more than 20 minutes without a break, so I'm lucky there.
I was also lucky in that I retired from work early (though to be honest I'm not so sure it was good for me - and I think maybe not so good for my wife having me 'under her feet' all day!).
As you mention, trying to keep busy is a good way to distract yourself from the pain and that's one of the things I miss not having my work. I probably over compensate by reading endlessly about fissures!
I've read somewhere (perhaps it's on this forum too) that it can help putting the Diltiazem just inside the anus and wiping off any externally to avoid the dreaded itch (if you do get the itch). I tried that and it did seem to help, though I'm not using Diltiazem at the moment (but luckily have some left in the 'fridge just in case!).
I think about next Tuesday it will be 8 weeks since I had the botox (or Dysport botulinum toxin in my case).
My CRS says it takes 2 days to take full effect. On a research paper online I read it can take 5 to 7 days in some people to take full effect.
I also read different reports that the maximum reduction in the Internal Sphincter resting pressure takes place at 4 and 8 weeks.
Anyway I assume that between 3 and 8 weeks you are receiving the maximum benefit from the dose you've been given.
Generally it seems that for most people it wears off after about 3 months - so again I assume the pressure reduction starts decreasing from maybe 10 weeks or earlier?
Possibly it varies from person to person, but generally the higher the dose (within reason) the more the effect,
though just to confuse me (!) I have read some reports to the contrary (ie the increased dose had no increased healing benefits).
From the four double injections (one to either side of the sphincters) that I've had over the years I would say that a higher dose definitely has benefits, though I suppose what that particular dose is depends perhaps on the (measurable) resting pressure of your internal sphincter. And of course when it's in spasm it will be even higher than normal.
And in the final analysis your CRS makes the decision based on his experience.
Oops, I'm rambling again.
Best wishes
Ralph
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Re: New - 4 and half years so far

Postby Hopeful lad » 26 Feb 2011, 08:36

Happy
Thanks!
Those Gin and Tonics are mighty tempting! (Fortunately my wife keeps an eye on me!).
Ralph
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Re: New - 4 and half years so far

Postby Bumbutt » 27 Feb 2011, 08:15

That was interesting info, so thanks for sharing Ralph!
Since the rectogesic effect lasts only about 90 minutes, it makes me think twice about what the most effective time to apply it is.
Welcome to the Forum!
- Bumbutt Image
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Re: New - 4 and half years so far

Postby Hopeful lad » 27 Feb 2011, 08:54

Thanks for the welcome BumButt!
I just posted under 'New here, months in agony' some info I've been told and have read about the rectogesic (GTN/NTG) in case it's of interest.
This is a link (I think I'm allowed to post them?) to a UK CRS group that has some interesting info on the rectogesic, and some other stuff too:
http://www.cheltenham-colorectal.org.uk/Pages/Patient%20information/GTN.pdf
By the way these are not my CRS, just ones I've come across online.
I agree it's difficult to know when to apply the rectogesic!
We're always told not to delay going when we need to go, but you need to have time to apply the darn stuff and give it a little time to work really, and in my case when I need to go I need to go! So maybe I don't get the full benefit when I most need it.
Perhaps that's my fault because I can't seem to stick to a regular time.
Also if you do insert it in the anal canal as I do (sorry graphic!) to avoid any burning etc (actually I'm very tolerant to any side effects of rectogesic as I've used it for years - and I suppose you can get 'burning sensation' inside as well as out as we know!) then it can mostly be pushed out again immediately by you know what!
To be honest I used to use it four or five times a day at least as I reckoned that it wasn't much use using it twice
a day as you only get a relaxed sphincter for about 3 hours out of the 24! I didn't think that would heal much in my case.
Now I've had some more botox I only use it before I go - which regrettably seems to be twice a day as I can't get it back to the once a day I used to go five glorious years ago when I thought a fissure only existed in the Himalayas or the Grand Canyon!
Best wishes to you.
Ralph
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Re: New - 4 and half years so far

Postby catnap » 27 Feb 2011, 20:09

Hi Ralph, welcome to the board, I'm new too!
You seem to have a lot of experience and information - I'm glad you aren't working as I'll probably fire lots of questions at you!! ;-)
First one:
Rectogesic. Briefly, I've had fissure for about 2 years, but when saw GP initially and follow up was pregnant and not in pain, just bleeding. I could see the tear myself quite clearly. As was pregnant the treatment was ultra conservative - keep stools soft and doc suggested sudocrem before and after BM. I think I've had flare-ups on/off since then, bit of pain with BM but only last few weeks has the pain been really bad. Bad day pain starts with BM and lasts all day. Good day pain with BM subsides after hour or 2. Sorry back to my question. From your experience/knowledge is rectogesic expected to actually cure a fissure or does it just relax the sphincter? And therefore help with spasms? Do GP's prescribe or do you need to see specialist? I'm seeing my GP this week not sure whether to ask for or if I'm too far gone and should just go straight for LIS (if that's offered!)
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Re: New - 4 and half years so far

Postby happyass » 27 Feb 2011, 22:11

hi catnap,
not sure where you are from but see if your GP is familiar with the drug ketanserin. it is used in Mexico and Latin America under the brand name Sufrexal (also a version Sufrexal P - this one contains an anesthetic) which is used to cure anal fissures by closing the wound.
of course, closing the wound will be dependent on how well you can keep your stools soft so that they don't stretch out the wound while healing.
i had trouble closing my skin tag would after LIS surgery and skin tag removal, and well, my fissure was very slowly closing too, and i was able to find the drug in Mexico. i have used it a week now (treatment is recommended for two weeks), and i believe it has helped me in closing both the skin tag open wound as well as the fissure that hadn't closed post LIS approximately 4.5 weeks out.
i am pretty sure now they are both closed but still probably need time to continue to close securely.
if you can get ketanserin in an ointment, try it. you may have luck seeking it out at a hospital pharmacy or possibly at a veterinary clinic.
good luck.
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