Op or No Op (hence username!)

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Op or No Op (hence username!)

Postby opornoop » 13 May 2012, 13:26

Hi.
I've only just found this forum today. First thing to say is I live in the UK, but from a quick look it seems like you have a few posters from my side of the pond.
I'm not even sure that what I have would be described as an anal fistula, but I certainly have a problem with my rear end, and I'm due to see a specialist on Wednesday. I saw him a couple of years ago and was told, 'I can do an operation, but there's a chance it could make a bad situation worse' That's actually worse than being told 'There's nothing we can do', or 'You're going to have a serious op whether you like it or not' I mean, do you play safe, and stick, or twist?
Briefly, 53 year old male. First had a problem going to the loo over 30 years ago. I had a polyp removed from back passage, but what they didn't tell me was they had also removed about a third of the internal sphincter muscle as well. This led to me constantly going back to doctor over the years saying I never felt clean, and it took me ages (minimum of 20 minutes) in the loo each time, and I needed to use alot of paper each time, generally feeling miserable, felt I had a smell, etc.
A few years ago I then had an op for haemmerhoids, and afterwards was left with something that I think is called a Whitehead deformity, or ectropion. Anyway, it's sort of mucosal skin, which permanantly feels damp. I think this is meant to be internal skin which somehow got pulled out when I had the haemmeroidectomy. I think the surgeon may have an analplasty op in mind, but having found site today, and read someone elses experience I don't know what to do. I don't have anything life threatening, but I take 20 minutes plus in the loo, I think I smell, (because you know what sticks to this damp, mucosal skin, that shouldn't be there) and I feel unclean and miserable, so I feel I have to try something. The op from 30 years ago left me slightly incontinent anyway The internal sphincter muscle is like a sliding door, and someone has sawn a third of it off, so it never closes properly, hence a lot of mess, and alot of paper needed every time I go.
I feel totally stressed out at the moment. In the UK we have local doctors (General Practitioners, or GP's for short) I had to ask my GP to show me the specialists report from a couple of years ago (otherwise I wouldn't have seen his conclusions) When I go back on Wednesday and say 'Please do something' I think he will say 'analplasty' but having read someone's account of the op on this forum I don't know what to do. Colostomy was also mentioned. I know exactly what that is, and I assume that's last resort, but i'm almost starting to think that would be preferable to analplasty, as in 'people have colostomies, and they do cope' Maybe it's all going round in my head I'm so stressed out. Anyone got any similar story, or words of comfort?
Thanks,
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Re: Op or No Op (hence username!)

Postby jr2 » 13 May 2012, 14:22

Hi opornoop,
Your history is really complex, and also a bit puzzling. I would think that before you make any decisions regarding surgery you really need a CRS who is highly experienced and skilled in more advanced problems of the anorectal area to evaluate you and explain to you in very precise language what is wrong and what your options are to remedy it as well as all the risks involved for any procedure you might undergo. I am not aware of any surgery that removes a third of the sphincter muscle. An LIS cuts the muscle but it does not remove any of it, and does carry with it the risk of incontinence to gas and/or stool, or the feeling of greater urgency to use the restroom.
At this point in your care it isn't really the time to be making decisions yet as to what treatment or surgery to explore as there is still too much unknown about what is going on. I would suggest you make out a list of questions before your appointment for when you see the colorectal specialist so that you don't have to try and remember them while you're in the office.
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Re: Op or No Op (hence username!)

Postby opornoop » 13 May 2012, 14:56

Thanks for reply. I'm only going by what I've been told. Could the polyp have attatched/growing on the internal sphinter, hence need to remove some of it?
We have a tv doctor in the UK who once quite openly said that 30 years ago it was quite common to not tell patients the whole story, so not to worry them. It was only when I saw specialist a couple of years ago he said 'a third of internal sphincter muscle missing' I assume that HAS to be correct. The person I'm seeing is one of the top surgeons in 'bottom problems' so I'm sure he knows what he is talking about. We have the National Health Service, which means you don't pay for an op, although I expect waiting list will be 4-6 months. However, to make sure I see 'the main man' I'm paying for Wednesdays appointment, otherwise I might have seen a lesser qualified junior doctor.
Last time he suggested 'coping techniques' hence two year delay before I've decided - not coping something has to be done. I'm aware my incontinence is maybe not caused in normal way (as in you wouldn't normal be missing some of the muscle unless it was surgically removed). Maybe you are right, and he used that description as a simplified way of explaining something to me. I've already writen down list of questions so I don't forget anything!
I've just remembered something else. Last time he said something about a divit in the muscle, which would have been something to do with the 30 year old op.
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Re: Op or No Op (hence username!)

Postby jr2 » 13 May 2012, 17:29

Wow, it's really hard to imagine a partial sphincterectomy being done for a polyp, but it does sound pretty definitive that this is what you had done. I think you are being wise to see the most senior qualified specialist that you can with a complex history such as yours. Aside from the logistical problems with keeping clean, some problems with incontinence, etc., what is your pain level like now?
I'm so sorry you're going through all this. You've got some really unique and unusual problems which makes it even more difficult to make decisions. Ultimately, when it comes to surgery you want to just make sure you know exactly what they are proposing to do so you can make the most informed decision possible.
I hope you will keep us updated on your doctor visit... ...I'm wishing only the very best for you and that soon you will find some more definitive answers and treatment strategies to get this problem solved for you once and for all.
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Re: Op or No Op (hence username!)

Postby opornoop » 16 May 2012, 09:56

Well I saw specialist today and it will be an anoplasty op. I hadn't realised this was a rare procedure, because although a specialist in problems of the posterior he said this would only be the fourth one he has done in 10 years. He's confident I should be no worse after op, and should find things better afterwards (no guarantee what percentage of better, but no worse than present) I said I had read of someone (on this forum-can't remember who) who had this op, and was still experiencing pain after 3 months. He looked a little surprised and said '10 days max' (in terms of pain) so I hope he's right. I need to back for some more pre-op tests in a few weeks, with August as likely time for op itself.
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Re: Op or No Op (hence username!)

Postby opornoop » 25 Nov 2012, 09:36

Hi, I can't believe it's 6 months since my last post, but I finally had anoplasty op on 13th Nov.
Delighted to say no real pain to speak of, but is it normal to still need the loo every 4 hours or so, or is this how it's going to be? I know I have about a third of internal sphincter muscle missing, as a result of op to remove a polyp 30 years ago. I'm hoping it's triggered by a sort of mostly watery discharge which I hope is still something to do with op, rather than a permanant state of affairs.
Can it take up to 3 weeks for this watery discharge to cease? Because of reduced internal sphincter muscle I can't keep this damp discharge in, and I think (hope) that is what is making me go all the time.
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Re: Op or No Op (hence username!)

Postby opornoop » 01 Dec 2012, 02:46

Thanks for the lack of replies.
A big help and comfort for me.
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Re: Op or No Op (hence username!)

Postby owmybum » 01 Dec 2012, 02:59

So sorry you have not had any feed back...... I, unfortunately have not had the surgery, so cannot answer your questions.
My only advice is to try and speak with your crs and tell them about the leakage and the need to go several times a day.
I understand your worries and frustrations x
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Re: Op or No Op (hence username!)

Postby Lauren12 » 01 Dec 2012, 06:06

Sorry not to have replied opornoop. It's only because my experience doesn't match yours, so I didn't feel I could offer anything. I'm really pleased to hear that you have no real pain to speak of. As for your other concerns, is it possible to contact your surgeon (possibly through his secretary at the hospital) to get some answers?
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