Living with it

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Living with it

Postby dmcff » 02 Mar 2016, 14:14

Does anyone on the forum have experience of simply living with a fissure/fissures? I.e. not going down the road to surgery, but managing the symptoms with medications - creams, painkillers, Pregabalin, Gabapentin, and so on, and also maybe using psychotherapy as a way of dealing with the mind/body issues this condition inevitably triggers? Can that also be a path to a cure?

Asking as a fissure sufferer, because I'm apprehensive and uncertain about surgery - Botox, LIS etc.
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: Living with it

Postby dmcff » 04 Mar 2016, 06:09

From the absence of replies I guess I'm the only one here who hasn't yet taken the route to surgery. Whether I will or not, I don't know. Since I live alone, I'm apprehensive about recovery times, mobility, etc. post op.
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: Living with it

Postby paine » 04 Mar 2016, 06:39

hi. im also apprehensive about surgery but now i am considering it since this thing keeps on coming back. since 2013 its like a roller coaster ride. i have managed it by using meds but they do not offer healing. sad life we are all in.
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Re: Living with it

Postby Ponder » 04 Mar 2016, 06:51

For what it's worth I am reading. This is my first post. I like your questions. I have no $$$ and find my GP rather Un -supportive. He refereed me to a gastroenterologist. The cost of the consultation was beyond what I could afford, so I double checked whether they could help with an Anal Fissure. (I did not want to wast money attending a place that could not help) I was told I needed a referral to a General Surgeon. Dis-heartened that I could of wasted hundreds of $$$ that I do not have ... I have lost faith in my doctor (the system) and going to wait till I end up in hospital again!
_____________________________________________
That's pretty much my reason for looking into the natural approach. Sadly I have read that those of us that have suffered for years can not be healed. There are claims made in this forum that the scar tissue from the continual healing and splitting cuts of the blood supply for long term or complete recovery to take place. I am wary of such claims though as this no doubt make for big business if you know what I mean. I often regret being so quick to have my gall bladder taken out. I have had nothing but issues since that operation took place. In fact, it probably has played into my now current issue with this here annual fissure. (Digestive issues and so on - of course mine had to come out lest it rupture and I die of toxic overload ... I was just not educated enough to know back then, nor was I informed adequately to make informed decisions ... call me ignorant, I don't mind :) - Ya live and ya learn)

Forgive me as I mean not to high jack your thread. Just sympathizing with the reluctance to jump straight under the knife.
I will be doing up some kind of journal in this forum soon enough.
I've had good results health wise with water fasting. Whilst there are those quick to knock pretty much most natural remedies, I can vouch that water fasting offers pain relief. It gave me space last time to set up a healthy routine. I've lost 22kg over the last 12 months, now have joined a gym and eat very clean. Alas - I am still suffering ... so in fact ... remain open to various claims regarding the scare tissue impeding full recovery.
__________________________
I'm sure someone will be along soon enough. They can probably better assist you. Time for me to get some much needed rest. I've been in a lot of pain today and need my ZZZZZZZZZZZZZZZZZZZzzzzzzzzzzzzzzzzzsss
I truly sympathize with both the reluctance for the opp. Given my doc has been rather unhelpful and that I am on a pension and no doubt require more hospitalization before they consider some kind of medicare government funding ... I'm all for learning to live as best I can with the pain.
Hopefully there may be some people in here that can help.
Wishing you all the best.
Dave.
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Re: Living with it

Postby dmcff » 04 Mar 2016, 07:35

Thanks for your replies, paine and Ponder. paine, I too have been thinking about opting for surgery, but keep rejecting it, especially after reading some of the posts on this forum. Ponder, I also have been looking into the natural approach to healing this awful condition, as I'm increasingly concerned that in conventional medicine there doesn't seem to be a proper cure for it.

I've found that getting involved in other activities, thinking about other stuff, work-related or not, helped to get my mind off the pain and discomfort, and for several months I almost forgot about it - almost, but not quite, and then it returned with renewed force. :(

At the moment I'm trying to continue my work - I work from home, luckily - but am having to deal with the problem of sleepless nights and varying degrees of pain. At present I find the most effective physical treatment to be warm baths, but I don't use coconut oil as I appear to be allergic to it, it causes irritation. Creams like diltiazem also seem to irritate my backside. I've continued to take Pregabalin combined with a low dose of amitryptaline, as I find I do get some relief from pain that way. Movicol (Miralax) and lactulose help to some extent to keep the stools soft, and I try to remember to drink enough water each day.

Ponder, I sympathize about unsupportive GPs. My own GP kept sending me to consultants, trying to establish whether I had prostatitis, Crohns or UC, and it was months before he would admit that my problem was a series of anal fissures. But then, I'm in the UK, and don't have to pay for treatment, so at least I don't have that problem. I did go private at one stage about a year ago, but it didn't produce much by way of improvement - I found that I was shunted between various specialists - a gastro, a urologist and a CRS - none of whom was really prepared to take me on as a patient. Though I guess I ought to thank the CRS for arranging my sigmoidoscopy and 2 MRIs to be done on the NHS, so that I didn't have to pay for them.

Sorry to hear about the gall bladder operation - that's exactly the kind of thing that scares me. The claim that AF is essentially beyond cure sounds reasonable.

It seems that because AF isn't life-threatening, it's not really taken seriously by the medical profession, even though by some doctors at least there's an acknowledgement that the pain of AF is at the top of the scale.

Ponder, hope you can get some rest and sleep!

I'm also Dave, by the way.
Last edited by dmcff on 04 Mar 2016, 08:24, 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
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Re: Living with it

Postby brokenbottom » 04 Mar 2016, 10:59

Hi dmcff! I agree that it seems like because AFs aren't life-threatening they seem to be considered unimportant to the medical profession. It's strange because given how common they are you would think that some of them must suffer with AFs too. Why on earth has no one worked out how to cure these things? They can graft whole new faces on people these days!

My experience so far is that I've been in increasing pain for the past five months. I haven't really had a day off - every day I have a BM and every day that triggers the pain, which often lasts all day. The only respite I had was the two days after I had botox treatment under general anaesthetic. I didn't have a BM for two days which was bliss. But then of course a really awful one came along and I was back where I started. Basically I don't think the botox has helped - if anything I'm worse and it's two weeks on from the op. Don't know what to try next, but I so wish I could get back to my normal life again.

One thing though - I keep thinking there must be people out there who have had these problems but they have got better. It's just that of course they don't feel the need to come on this board then. I know I wouldn't!

Anyway wishing you strength and healing.
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: Living with it

Postby dmcff » 04 Mar 2016, 12:12

I agree, brokenbottom - there must surely be lots of people with AF out there, and yet it's a condition that is hardly ever mentioned in the media. In fact, I can't remember ever seeing a U.K. newspaper article or tv programme that dealt with the subject. There is one New York Times article from 2013 - http://well.blogs.nytimes.com/2013/11/1 ... cuss/?_r=0 but that's the only one I know of.

Maybe it's time that AF sufferers got more proactive about mentioning their trouble and talking about it in public, and beyond the forum! It's nothing short of amazing that in the 21st century there should still be such a taboo surrounding the topic.

I'm sorry to hear about your pain, and hope that maybe the Botox will kick in eventually, even if it's a bit late. I haven't had Botox yet - it's the next item on my pain doctor's list (plus another sigmoidoscopy, which he says "doesn't hurt" (!)) - but thanks for your comments on the treatment, I have taken note. My pain was severe for the first six or seven months, then it moderated almost to a point where i could ignore it, but then in January for some unknown reason it started to return, and is presently giving me a lot of trouble. I believe that some of it is stress related.

Thank you also for the wishes. Best, DM
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: Living with it

Postby brokenbottom » 04 Mar 2016, 13:03

Yes I agree we should speak out! It is strange how no one talks about it but judging by the statistics we must all know loads of people with this problem.
As for the botox I can't recommend it exactly (seeing as it hasn't really helped me at all as far as I can tell!) but for some people it does work and you might be lucky. I think my next option might be another go at it and I'll probably try. Actual surgery (as in the cutty muscles thing) is something I'd really rather not do. But then it depends how desperate I get!
Good luck Dave. I really hope things improve for all of us!
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: Living with it

Postby Savaici » 04 Mar 2016, 14:50

I did not "go under the knife" or even have Botox. My signature says it all in few words.
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Re: Living with it

Postby dmcff » 04 Mar 2016, 15:20

Thanks, Savaici. Now I'm reading this thread with interest, and wondering whether to try self-dilation.
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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