New Poster veteran reader! Couple of q's post LIS & creams

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New Poster veteran reader! Couple of q's post LIS & creams

Postby ohant » 03 Dec 2012, 13:49

Hello all,
As the title says I've been reading this forum for support since last march after being afflicted with one of these horrible things. My story rings true to many on here of trying absolutely everything up to the point of surgery and beyond. One thing for sure this is a great place to come to relate and learn.
I've tried all the creams apart from nifedipine, had the dilt itch and had to stop which was a shame as it did work well. Even had lis 4 months ago which has been a strange experience - the fissure felt healed instantly until two weeks had passed and I felt like the internal sphincter had tightened up again slightly causing a retear. I did heal again and quicker, but unfortunately never fully and here I am today. My pain levels are probably a 2-3 out of ten now compared to off the chart before the lis which is positive I know, but I am determined for this thing to go completely.
I had a limited sphincterotomy which I can't help think needs to go all the way up to the d line to get full relief. I can only describe my pain now as a sore abrasion rather than a fissure in my anal canal. So I'm wondering if anyone else has had this post lis?
And finally, does anyone know the brand name for nifedipine on the nhs in the uk? My doctor doesn't even know!
Thanks and greetings/merry Xmas to all. One day we all get there : )
ohant
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Re: New Poster veteran reader! Couple of q's post LIS & creams

Postby Lauren12 » 03 Dec 2012, 14:32

Hi Ohant
What does your CRS say? It took me about eight months or more to completely recover from the LIS, but unlike yourself, I didn't have an instant feeling of being cured but then got worse; it seemed to be a very gradual improvement for me. In the early days after the LIS, I was still developing minor fissures with some bowel movements, but the CRS said this would stop eventually, and it has. I do, still, sometimes develop minor damage with large bowel movements (I'm 20 months post LIS now). In fact I've produced little bits of blood for the past few days with bowel movements (very little), so obviously there's some recent damage still healing, but I'm experiencing it now as would someone who'd never had problems with a fissure - a minor irritation after bowel movements which gets better within 15 minutes and then I don't notice it for the rest of the day.
Apparently I do still have quite a high muscle tone down there for someone who's had the LIS, but it's not bothering me.
For a long time after the operation however, I had a pain cycle going on between anus and brain, in that I experienced even minor damage as quite painful. This was because I'd been in pain for so long prior to the op, that even minor sensations that wouldn't trouble anyone with a normal anus, felt painful to me. It took the pain cycle several months to downgrade so that I again had a normal level of sensation in the anus and now minor damage doesn't bother me again. I wonder if something like this may be going on for you? Although maybe not, as you say you felt instantly healed following surgery, but then felt as though your sphincter had tightened up again. I certainly did go through all sorts of ups and downs in the months i took to recover, one moment thinking things were going really well, and then being plunged back into despondancy because I felt I'd re-damaged. Eventually everything became normal however. The CRS I saw said that the anus is a complex structure, and can take quite a long time to revert to normal after any disruption (e.g. surgery or a fissure).
The only one who can really answer what is going on is your CRS. An examination should reveal the state of things, including whether your muscle tone is high.
All the best to you.
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Re: New Poster veteran reader! Couple of q's post LIS & creams

Postby ohant » 03 Dec 2012, 15:02

Hi Lauren,
Thanks for your response. It was very insightful, I can see why people recommend talking to others with the same problem - you have got my mind working with your reply.
The pain cycle you refer to between anus and brain is interesting - and something I've refused to acknowledge until now. I think this also gets worse the longer you've suffered. Sometimes I don't think I can remember what normal feels like down there. The pain is real I'm sure of that, but whether I'm now hypersensitive or focusing too much is open for debate. I'm not sure.
My CRS also did say exactly as you state - that the anus is a complex and very slow healing part of the body. It takes time to heal. He has examined me twice since and believes I'm healing, but on the other hand he is so horizontal to the point of being dismissive about fissures. He never has filled me with confidence but maybe thats just his way.
But yes, my fissure did completely go away for two weeks post LIS, I think its this thats made me doubt whether I'll ever heal without further treatment. In this period I was that loose I struggled to hold a bm once or twice, not soiling, just a feeling of urgency, but this has long gone now which could be an indicator of it tightening up a bit down there. But then again I have heard this happens to most.
One school of thought is scar tissue, I had an issue with this for ages, like a brick was wedged up there. it's not as bad now, but all day long I just don't feel right down there. But like you say, it's only 5 months for me. When i'm at your stage I could be completely different.
My muscle tone isn't very high I dont think. I suspect blood flow is an issue. How long was it until after your op did you feel near to normal?
Thanks : )
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Re: New Poster veteran reader! Couple of q's post LIS & creams

Postby Lauren12 » 03 Dec 2012, 16:09

Hi again ohant
I know, it's really important for a CRS to be reassuring isn't it? I went back to mine several times in the months following the operation and he reassured me that I was cured, and the pain would subside eventually. This was really important to put my mind rest. He was the third consultant surgeon I'd seen, and the one to finally fix me, so I know what it's like to see surgeons whose patient communication is zilch, and the impact that has on you. Have you thought of consulting someone else for a second opinion? What does your current CRS say in answer to your questions about your healing - for example how does he explain that you were fine for two weeks and then there was a recurrence of the pain, and to your queries about scar tissue? I used to go into my appointments with a list of written questions, and make sure I went through them all. Even then, with the first two surgeons I saw, I didn't seem to get satisfactory answers. Only the third had excellent patient communication, and explained in detail, involving drawing diagrams! I wonder if it's possible to find a surgeon in your area through personal recommendation, who someone else knows is good, sympathetic and communicates well with patients.
I had some accidents in the immediate period after the LIS procedure too, if I remember, with releasing bowel motions, thinking it was wind. But as you say, it stops happening as time goes on. If the muscle's been cut to a degree, and has become looser as a result, is it then possible for it to become tighter again? This seems to be part of what you need explaining. There's always going to be a degree of muscle tone, and some spasms I think, because to remove them completely would involve cutting the muscle completely, which would involve incontinence. So as some muscle function remains, out of necessity, is it then possible for muscle tone to build again? Do you feel that the degree of the incision wasn't sufficient and you might benefit from more? Does your surgeon agree, or does he just think you have a long healing and adjustment process?
Or perhaps, as you say, it might involve scar tissue. That isn't something I have experience of (in the way of it having been a problem for me) so I'm afraid I don't have anything to offer on that.
Yes, a pain cycle develops in response to chronic pain. I was in pain so consistently and for so long before the LIS procedure, that I developed one. It took a while to die down after the LIS to a normal level of pain and sensation. I think it's something to do with the gate control theory of pain.
Thinking back, I think it was about 9 months after my op before I felt close to normal. I remember using a glycerin suppository 8 months after my op, when I couldn't pass a stool one day. For people with a normal anus, glycerin suppositories don't cause any problem. However, eight months after my op, it caused 48 hours of irritation to my anus which was very uncomfortable. I had to cancel a night out because of it for example. Now, 20 months later, I can use glycerin suppositories with no problem, just the same as someone with a normal anus. It doesn't cause any irritation at all, and I just get on with my day with no problem. So it took me quite a long time to recover normal levels of sensation. At the time, I'd read accounts from people who'd had the LIS and recovered within a matter of days or weeks, and thought it hadn't worked for me. I was reassured several times by the CRS that it had worked, and would improve (which it did). He said at the end of it, I'd always have an anus I was aware of, but I wouldn't be in in any pain - which is the case. I don't know why it took me so long - presumably because of the pain cycle I'd developed, although as I say, my muscle tone is still apparently quite high for someone who's had the LIS, but that doesn't seem to be really bothering me. The CRS said that women post menopause lose anal muscle tone anyway, and that in my case that would be a good thing!
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Re: New Poster veteran reader! Couple of q's post LIS & creams

Postby Lauren12 » 03 Dec 2012, 16:14

Thinking about it further, I also think scar tissue is raised for a few months after surgery, so that could contribute to minor damage in your anus that you wouldn't get later on.
I can't explain why you were pain-free for two weeks following the operation however, and why you then reverted to having some pain and wonder what your CRS says.
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Re: New Poster veteran reader! Couple of q's post LIS & creams

Postby ohant » 04 Dec 2012, 12:47

Hi Lauren,
Thanks again for your reply.
You're so right about the importance of a surgeon with good patient communication skills. The surgeon who operated on me was a colleague of the initial surgeon I saw who like yours drew diagrams and was very willing to answer my questions fully. Unfortunately he was absent unexpectedly so I settled for the new surgeon due to the pain I was in. It wasn't until after I realised how quite the opposite this guy was. I actually went in with a notepad too and he laughed dismissively as if having a fissure didnt warrant questions. Big mistake going with him I know but this was afterwards. I actually remember telling him about my retear and the pain it was causing and he literally said 'just put some hemmoroid cream on it'. Really don't think he understands the pain levels a fissure causes. I think you are right I will seek another opinion. He did actually offer a botox shot if things didnt improve but I'm in two minds about the whole botox thing - seems like just sticking a plaster on it. My personal view is LIS is a permanent form of botox, if I've retorn and still in pain then surely the LIS needs redoing.
Like you I have been given a plethora of unsatisfactory responses. He once said that my fissure was small and that my pain levels were disproportionate, yet when i showed him an article which rated fissures as the number one cause of extreme anal pain regardless of size, he then said well yes a fissure is a fissure. Slightly contradictory?!
My CRS basically said that the muscle will always regain some of its original strength. Apparently this is achieved at the apex of the incision where the fissure begins. The muscle has tried to heal and does so slightly but when the divide is too great in width it simply can't rejoin any further. I think this is where my problem is as he said my LIS was limited in that he did not cut from the dentate line (the maximum distal part from which the cut begins to retain continence), only from the apex of my fissure. I think the muscle is still too tight over my fissure preventing it from completely healing, although in the first two weeks it was fine. He shys away from any conversation in this area, probably because I am a self pay patient at a private hospital and he knows its not as simple as billing the insurance company again for a repeat procedure. I caught him out though, because at the time I was on Diltiazem, and asked how is it when I use this cream I feel good and loose with no pain and things begin to heal, yet when I stop (post LIS) things tighten up and pain returns? This is when he admitted that the muscle tightens back up again.
It sounds like your procedure was a success, in that you are confident that any issues you have are recovery related. My position doesn't seem to change, I have this gnawing dull pain exactly the same every day. Nothing has changed in this 5 months apart from the scar tissue reducing. Maybe I will seek that second opinion….
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Re: New Poster veteran reader! Couple of q's post LIS & creams

Postby Lauren12 » 04 Dec 2012, 15:54

Thank you for your really informative post ohant.
It always amazes me when a CRS doesn't understand the level of pain involved with a fissure. The second one I saw was dismissive too, and I had the impression that I was bothering her with what she considered was a minor matter and should just go away. She even referred to 'idiopathic pain' at one point, in other words, pain without well defined physiological correlates. I became incredibly distressed as I thought it could all be in my mind and there was no further surgical solution.
The third surgeon however, had had anus problems himself in the past. He told me that unless someone's experienced it, they can't possibly understand what anal pain is like.
In my view, if a patient's reporting continued pain to a surgeon following surgery, they should be investigating, problem solving, and offering a hypothesis. If he thinks you're just taking a long time to recover, then he should say that. It amazes me how cavalier some of them are with their patients. I can understand how you lack faith in him when he's apparently contradictory in his responses and dismissive. I don't suppose the first surgeon's back at work? If he's moved to another hospital, you could probably trace him on the internet.
I didn't know the details concerning the muscle regaining its strength and found them very interesting. Your explanation for why you were pain free briefly, and then the pain resumed sounds very plausible to me. Personally I think a surgeon should address it, and even if he doesn't agree, explain why not. You might get further with another surgeon.
Could Diltiazem help heal the fissure if you notice a difference with it? Just a thought.
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Re: New Poster veteran reader! Couple of q's post LIS & creams

Postby ohant » 04 Dec 2012, 16:23

Reading your comments Lauren I am surprised to hear that your experiences with nonchalant surgeons sound exactly the same as mine. They are indeed very cavalier in their approach. It's even been inferred my pain threshold is low. Unbelievable. I remember thinking when this was said to me, you've obviously never had a fissure. Like you I also became distressed, especially when one doc told me to open my mind to the possibility that this is something I might have to live with. Talk about dashing hopes! I find it unbelievable that medical professionals are so ignorant about the severity of anal pain. Even CRS's are which is worse.
On a positive note, you were fortunate to have a surgeon who knew first hand, this must have influenced his attitude and probably surgical approach. I think I will try to see the first surgeon again. Just annoying as it cost so much the first time round!
To be honest, I am awaiting the outcome of a complaint with the hospital over my non healing and surgeon advice to just give it more time. I feel conned slightly as this is all he has said to me the whole time, but the more time that passes the less come back I have! Nightmare.
I wish I could try the dilt again, I got the itch unfortunately months ago and had to stop. An itch impossible to ignore. Such a shame as it did work for me. I'm trying to get hold of nifedipine, but my gp and I are unsure of the brand name on the nhs. I was hoping to find this from someone on here actually. I've even tried gtn again but that itches too.
Have you ever had Botox? I've never tried this. Slightly dubious....
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Re: New Poster veteran reader! Couple of q's post LIS & creams

Postby Lauren12 » 04 Dec 2012, 17:27

Yes I had Botox twice, at six monthly intervals, but I was one of the people it didn't work for. It did alleviate the pain slightly, but when it wore off after about four months, the spasms came back. It was the second surgeon I saw who performed the Botox procedures. When it didn't work for me, she didn't offer any further surgical solutions but wanted to refer me for biofeedback. The third surgeon however performed the LIS op, and that worked for me (although I had a rather long recovery period, as mentioned!)
I didn't realise you were in the UK. For some reason I thought you were in the States! If you're anywhere near London, I can give you the details of the third surgeon I saw if you like (the one who eventually fixed it).
Do you think it might be the case that you're still in a recovery period - although you say the pain is at a consistent level and not improving? I do seem to remember getting frequently upset about the recovery up to about nine months after the operation, thinking there was something wrong - and then suddenly as it seemed, I was just able to forget about it, because it reached a level where it wasn't so much bother. However, unlike you, I didn't have an early relief from pain and then a resumption of pain. Two weeks after the operation I was still in quite a lot of pain.
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Re: New Poster veteran reader! Couple of q's post LIS & creams

Postby ohant » 05 Dec 2012, 04:24

It's amazing how botox only seems to work with a small number of people. I don't think they offer it on the nhs for this reason according to my surgeon. Thats why Im reluctant to have it, as the invonvenience of the side effects dont seem worth it. Apparently though, if it's targeted and done under a general the benefits are more than administration with no sedation. I still dont like the sounds of it.
But yes there a lot of members from the states on here, it would be great if you could provide the details of your CRS, Im not in london but willing to travel to see the right person! thanks.
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