Living with fissures

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Living with fissures

Postby dmcff » 03 Sep 2017, 04:34

This is all about my own experience, but perhaps others can relate to some of it.

In general for the past three years, after some initial months of stress and panic, I've attempted to live with my fissure(s), not always sure of what's really going on down there. I have seen several CRS, and I have a GP who is quite difficult to see (there's a 4-week waiting period), though she has spoken to me by telephone several times, and is willing to prescribe medications - Laxido (Miralax), lactulose, GTN ointment and pregabalin (200 mg per day). Her attitude is that these should be sufficient to see me through on a day-to-day basis, and in general that seems to be true - life is not exactly comfortable, but I can manage from one day to the next without too much pain. BMs are fairly normal, if slightly loose. The pain and discomfort are there, though, especially at night, when I have BMs I wish could wait until morning, and often I don't get enough sleep. Also, from time to time I have flare-ups, and then, like today, I'm confronted by a sharp inflammation and sore spot in my rectum that doesn't seem to have any immediate cause. I haven't had Botox or LIS, have been trying to avoid them - I live alone, don't have backup from relatives or friends, and am uncertain that I could manage the recovery periods involved. Also have a (probably irrational) fear that surgery might only make things worse. I see a psychotherapist once a week, and find that helps with my anxiety.

The end result of all this seems to be that the best plan for me is to soldier on, manage the pain with pregabalin, keep using the GTN, treat the anxiety, and hope that in time the physical symptoms - the inflammation, the redness, the pain, the swelling - will fade and my life will return to normal.

Should add that for the most part I'm able to lead a fairly normal life for a 72-year-old male, can drive, visit stores for shopping, socialise a little, read, write, watch TV, get out and exercise a bit, and so on. It's just that ever present in the background is this strange, invisible complaint, a discomfort and nagging unease I have to drag around with me, something I never had in my earlier life.

David
2014 Anal fissure
2015 CAT scan, EUA and sigmoidoscopy, 2 MRI scans - 4 hospital stays - severe to low pain
2016 Anal fissure - pain severe then moderate to low
2017 Return of moderate pain
2018 Physiotherapy, pain management
2019-20 Just living with it
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Re: Living with fissures

Postby LemonMan » 03 Sep 2017, 15:55

Hi David,
I can definitely relate to what you are going through. What is it about botox that you are worried about? Apart from an increased urgency to "go" my personal experience was I was able to function pretty much as normal after a few days. I think this is a fairly typical experience. Might be worth considering, and it might just work for you. No-one should have to live with this problem. Botox is a very conservative treatment.
Best, LM
Aug 14: Anal Abscess diagnosed
Dec 15: Anterior Anal Fissure diagnosed
Jan 16: Anoheal - Thought was healed end of Jan
Apr 16: Anoheal - Thought was healed end of May
Sep 16: Fissure back. Started Anoheal again
May 17: Botox and banding - fingers crossed
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Re: Living with fissures

Postby dmcff » 04 Sep 2017, 01:41

Thanks for your reply, LM. I don't really know why I'm worried about Botox. Perhaps it's just that, having established a fixed daily routine, I'm scared of having it broken and interrupted by a new procedure with which I'm unfamiliar. Am not too comfortable with the prospect of general anaesthetic. Also have read reports of people having increased amounts of pain after Botox. But you are right - living with fissures is no way to live, and I need to do something proactive.

I have something of a problem in that, while my 'official' medical diagnosis is AF, only one CRS ever actually reported seeing a fissure (a healed one) - this was during my EUA two years ago. GPs and others have claimed to see haemorrhoids, but the source of my rectal pain and discomfort has been obscure, and without a proper investigation it remains a bit of a mystery.

I'm due to receive a call from my current GP on Thursday to assess my condition, and I feel that I will need to tell her then if I want her to refer me for Botox.

David
2014 Anal fissure
2015 CAT scan, EUA and sigmoidoscopy, 2 MRI scans - 4 hospital stays - severe to low pain
2016 Anal fissure - pain severe then moderate to low
2017 Return of moderate pain
2018 Physiotherapy, pain management
2019-20 Just living with it
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Re: Living with fissures

Postby LemonMan » 04 Sep 2017, 13:35

Hi David,

I have read those same reports about people suffering after Botox, but I think those people are the exception to the rule. Mostly what I read is positive. Remind yourself that people tend to post their negative experiences, and not their positive experiences. I know what you mean about a general anaesthetic too, this was a fear of mine. All I can say is not too worry about it. Hundreds are done everyday, and they all go fine.

As part of Botox the first thing they will do is another EUA to assess you. At that point you are perfectly relaxed and there is a good opportunity for the surgeon to have a proper look around. They can then make a judgement call on what to do.

Whatever you decide I would push for a referral to see a CRS again to discuss your options. You can then decide how to proceed from there. Like many here, I tend to put a brave face on things, but it's your GPs job to help you, so you have to let them know how this is affecting you.

Hope you get to the bottom of it (pun half intended), and let us know how you get on.
Best, LM
Aug 14: Anal Abscess diagnosed
Dec 15: Anterior Anal Fissure diagnosed
Jan 16: Anoheal - Thought was healed end of Jan
Apr 16: Anoheal - Thought was healed end of May
Sep 16: Fissure back. Started Anoheal again
May 17: Botox and banding - fingers crossed
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Re: Living with fissures

Postby dmcff » 05 Sep 2017, 02:49

Thanks, LM. On Thursday I will ask my GP to refer me to a CRS - I haven't seen one for quite a long time, almost a year, so it's probably a good idea to get a referral now. I'm currently in the midst of a flare-up - pain and swelling, constipation, irregular BMs, spasms, it affects my sleep, makes everything seem hopeless. :roll: I'll post an update on any progress I make.

David
2014 Anal fissure
2015 CAT scan, EUA and sigmoidoscopy, 2 MRI scans - 4 hospital stays - severe to low pain
2016 Anal fissure - pain severe then moderate to low
2017 Return of moderate pain
2018 Physiotherapy, pain management
2019-20 Just living with it
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Re: Living with fissures

Postby Mypoorbutt » 05 Sep 2017, 05:09

Hi
It's always an individual choice but in my case I was in significant pain which made the decision easier. If your fissure hasn't healed in 3 years then it plainly needs more help and there is always the risk that if you leave it it could get worse...maybe a stomach bug or a course of antibiotics....I had the Botox and was back at the gym n swimming after two weeks I was doing 32 lengths instead of 64 but by week 4 I was back to the 64. The recovery wasn't "hard" I was sore and swollen but I have hems that didn't help. I was out shopping on day 3 and never had to take to my bed. The Botox gave me a lovely 12 weeks free from spasms and I only had burning when my crohns flares
I have also had LIS and although the recovery was harder than Botox it was mainly due to my own issues. I'm now more or less back to life pre fissure...I can sit at work again I can drink alcohol again I can do everything I did before the dreaded fissure came into my life. If I have a bad flare I will still get pain but we are talking going to the toilet ten plus times in 12 hours.
You have no digestive issues I'm practically certain that either Botox or LIS will heal you and there will be no residual pain.
IT one of the boardies had LIS he is a healthy 30ish male very into weightlifting n the gym. He had LIS and was pretty much back to normal after 2 weeks. He did write a diary so have a read it may help allay any concerns
Again it's all down to the impact it's having on your life but like LM says most of the horror stories are from people with underlying issues
Good luck
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Re: Living with fissures

Postby dmcff » 05 Sep 2017, 05:40

I really admire your tenacity with the gym and swimming, MPB. Swimming is a physical exercise I currently miss, partly because the pool was closed over the summer because of a hygiene alert, and partly because when it opened again I found that what I think was the extra chlorine in the water irritated my fissure, and so I stopped going. A far as I can determine, the present flare is associated with that irritation.

I think the real problem I have is that no one - apart from a CRS I consulted privately and who then referred me on to the NHS at the local hospital - has really given me a proper diagnosis. I got so stressed out with my former GP and all the various treatments he prescribed - he kept shifting between AF, Crohn's and UC - that in the end I changed GPs. I have what appear to be the typical symptoms of AF, though without the pain on passing stool (and without the blood), but the hospital doctors apparently decided that my main problem was pain, and I was shunted off into Pain Management, away from surgery and treatments like Botox. Now, however, after all this time, I think they will recommend Botox. I will try to find out via my GP and the referral. My new GP is convinced that I can recover from the setbacks, and takes a positive view of my chances.

David
2014 Anal fissure
2015 CAT scan, EUA and sigmoidoscopy, 2 MRI scans - 4 hospital stays - severe to low pain
2016 Anal fissure - pain severe then moderate to low
2017 Return of moderate pain
2018 Physiotherapy, pain management
2019-20 Just living with it
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Re: Living with fissures

Postby Mypoorbutt » 05 Sep 2017, 07:30

Thanks I did put a barrier cream on my fissure when I went swimming but now it has healed I just make sure to put some nappy cream on when I get home after swimming.
I too never had blood from my fissure and absolutely no pain whilst going to the toilet my pain came on about 20/30 mins after and could last for 12/24 hours.
My gp and 3 CRS couldn't see my fissure it was only when I researched and paid private to see a CRS that specialised in IBDs that he saw the very tip of my fissure. After he had had "a proper look" when he did the Botox he said it was the worst fissure he had seen in 25 years. Yet he was the only one who could see it.
I really hope you get some good advice on Thursday and that you find someone who will listen to you as having a fissure can take over our lives sometimes without our even noticing
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Re: Living with fissures

Postby LemonMan » 05 Sep 2017, 07:44

Really good you're back to pre-fissure normal MPB. I know you really suffered.
Aug 14: Anal Abscess diagnosed
Dec 15: Anterior Anal Fissure diagnosed
Jan 16: Anoheal - Thought was healed end of Jan
Apr 16: Anoheal - Thought was healed end of May
Sep 16: Fissure back. Started Anoheal again
May 17: Botox and banding - fingers crossed
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Re: Living with fissures

Postby dmcff » 05 Sep 2017, 07:49

Mypoorbutt wrote:
I really hope you get some good advice on Thursday and that you find someone who will listen to you as having a fissure can take over our lives sometimes without our even noticing


Thanks, I hope so too.

Yes! Though I do notice it - it becomes a kind of all-enveloping fog, especially when there's pain, and it's hard to see anything through the fog.

Just have to defy the fog, and pretend, at least for a while, that life is normal. But also - be kind to oneself, and one's pelvis - it's a very sensitive place.

David
2014 Anal fissure
2015 CAT scan, EUA and sigmoidoscopy, 2 MRI scans - 4 hospital stays - severe to low pain
2016 Anal fissure - pain severe then moderate to low
2017 Return of moderate pain
2018 Physiotherapy, pain management
2019-20 Just living with it
dmcff
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Posts: 329
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Joined: 07 Jul 2015, 08:49
Location: Kent, U.K.
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