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I have had my seton stitch in for nearly 5 years and I am always swelling up - can someone talk to m

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Posted 3/12/2012 12:50 PM (GMT 0)

Hello,

I got an abscess 5 years ago and when they went to drain it in the hospital, they said they found a fistulae tract and they put in a silastic loop or seton stitch. Occasionally it flares up, usually when I catch the end of the stich and it pulls. I've had a horrible weekend in pain, swollen massively round the stitch hence pulling it tight and cutting in to the old scar tissue. I don't think it is an infection, just a flare up. 

I have been trying to get my surgeon to remove it without cutting through my sphincter but he will not even discuss it with me.

I have written to him about 10 times over the last 5 years and each time I say I do not want my sphincter cut through, he just removes me from the waiting list and ignores my request to snip the stitch and pull it out.

My doctor doesn't even want to look at the stitch as she says it is outside her remit.

Can anyone offer me any help or advice please?

I live in the UK and feel like I am living on Mars as I feel so alone with my predicament.

I don't think I have crohns disease but don't know what other heading to put this under.

Regards

Martin

Posted 3/12/2012 1:36 PM (GMT 0)
 

Hi Martin,

I really don't know anything about seton stitches so can't comment on that(sorry)

Your surgeon sounds like an a**. He really should be in dialogue with you and at the very least if he is not prepared to do what you would like he needs to tell you exactly why he is not prepared to do it. Unfortunately some(not all by any means) of them have too big an ego and how dare anyone question them

I think if I were in your position I would go back to GP and ask for a referral somewhere else or ask her to act as a go between with the surgeon.

Another option may be to contact The Patients Associaition-http://patients-association.com/

Hope you get something sorted soon

 

Posted 3/20/2012 11:05 AM (GMT 0)
Hello Vixen,

Thank you very much for responding to my plea. I went to the Doctors and saw a different Doctor and he said he would write to my consultant on my behalf and see what can be done so I am keeping my fingers crossed. I am tempted to just snip it out and let it work it's way out of my body.

I need to lose weight first so I can get a hold of it. I know this isn't recommended but after 5 years and dozens of letters written to my consultant who is a big ARSE I get frustrated.

I will keep the link you sent me though so thanks again.

Martin

Posted 3/21/2012 6:43 AM (GMT 0)
Hi Martin,

I cannot imagine having a seton in for 5 years. I had two put in at the same time a while ago for the same issues as yourself, but both came out within a few months.

I may be a little off base because I live in the US and am unaware of how everything goes in the UK, but I agree with vixen, your GI does sound like he is an idiot. When was the last time you've seen your doctor and had him actually exam you? You mentioned that you've written to him, but have you had an appointmentc lately? I would try to be in my GI's office at least twice a month in your situation.

Also, do you have someone who can advocate for you? Sometimes it can help if you have a family member contact doctors or be at appointments with you so they can help explain to your doctors about your problems. With someone else at the appointment, your doctor would have to accept how bad you are and how much pain you are in, with an additional person saying the same things you are.

I would really try to get an appointment with your GI to talk about the setons and possibly exam them. Just as vixen also said, I would definitely attempt to get a referral to another doctor.

Hang in there and good luck with everything.
Posted 3/21/2012 2:25 PM (GMT 0)
I feel overwhelmed with gratitude for you 'Riddle Me This', and 'Vixen', you are very kind. It means so much to have practical support and I will pay heed to your very good advice. I won't go by myself to my Consultant next time. I will take a very practical friend. I've stopped eating sugar and my abscess's seem to be in abeyance. I am on the atkins diet too at the moment but am eating a lot of salady stuff. I think I may turn into Bugs Bunny!!

Both of you, spending your time in helping me have both helped me immensely and I am grateful that you are here on the planet same time as me.

You never really know just how much your experience can help another human being.

I'll let you know how I get on. The other Doctor I went to see last week was supposed to be writing to my consultant to see if he could snip it out in the Doctor's surgery so I will go and see him next week and I will let you know how I get on.

I realise that you have had experience with the same kind of issues as I am having and I am thinking of you both and hoping that you are in a period of peacefulness.

Kind regards from Bexhill-On-Sea [sleepy little seaside town].

Martin

Posted 3/21/2012 5:58 PM (GMT 0)
 

Hi Martin,

Like I said I don't know anything about seton stitches but I don't think I would go snipping at them yet though!! 

If you don't get any joy with new Dr try and go via Patient's Association-they very well may be ale to give you localised help.

It is a good idea to take someone with you to appointments, they may well hear more of what is being said(or not said) and they can also put your needs/feeling across too.

Good luck on the Atkins, I did it for a while it is effective but not at all easy and good luck with getting the stitch snipped too!

Posted 3/21/2012 7:59 PM (GMT 0)
I had a seton stitch put in on Wed 14th March, it seemed ok for a few days but today I have been off work with it, so swollen up, either an infection or another absess. There is a hard lump at the side of it, beside where the fistula is. I should go to the Dr but feel they wont know what to do. Ive just finished a long course of antibiotics so prob cant have any more. Do you know if you can get antibiotic cream to put on fistula?
Posted 3/22/2012 5:19 AM (GMT 0)
Hi again!

It's great that you've been in contact with another doctor. I really do hope that you will the help that you need and deserve! I wish you the best luck with this doctor and really getting everything straightened out.

We are all here to support you and will continue to do so even when (not if! we believe you can fix this!) get these seton issues solved! I look forward to hearing how the appointment goes!

Also, are you any pain? Seeing a pain management doctorwould really help with this. With any type of perianal issues, such as yours, I would recommend a lidocaine jelly, it completely numbs the area for some great pain relief! It really helps! Have you tried any sitz baths before? Or even a regular bath with epsom salts? They work great!

I'm also on a diet, it's a specific one my nutritionist put me on. It doesn't really look at cutting certain things out; instead, you can eat whatever you want as long as you stay in your nutritional limits. Very interesting! I understand how difficult it is!

So we're here for you! Before and after you see the doctor! Can't wait to hear how it goes :)

OH, also where is Bexhill-On-Sea in proximity to London? I lived in London for about 3 months about two years ago and thoroughly enjoyed it. Didn't get much out to the country though. Went to Oxford and the Cotswolds and also Bath and then to Stonehenge. But no where near the sea unfortunately!
Posted 3/22/2012 5:24 AM (GMT 0)
Hi lion! Even though you don't have much belief in your doctor, they have dealt with this before and I think you should give them a chance. Give them a call and exdplain your symptoms and go from there!

I would also suggest, though, if you don't have a good relationship with your doctor, that's no way to work. If your doctor really doesn't have things figured out, then maybe think of getting a new one.

I'm not sure about the antibiotics deal, but I can tell you that I was on antibiotics for a good long year. Now I know that's not necessarily normal, but it may help some.

There are definitely antibiotic creams and the like that you can get for fistualas. I've acutally had a pharmacy make some for me before, mixed with a medication that had never been used.

Best of luck!
Posted 3/23/2012 8:26 AM (GMT 0)
Hi RiddleMeThis
Thank you for your help. Will ckeck out a cream as around my seton is agony. I do like my GP its just when you have been going in and out of hospital you feel they are a bit out of the loop. But you are right and I will go.
Posted 3/23/2012 12:53 PM (GMT 0)
I don't know much about seton stiches, either, but I don't think you should pull it, because you could tug at the wrong thing.
I don't understand why your surgeon won't help you. What is his reasoning, after all this time? Go see another surgeon, if you need to.

Good luck.
Posted 3/24/2012 6:14 AM (GMT 0)
Lion,

There is also a cream/gel called lidoncaine that will completely numb the area. Takes away all of your pain. As long as you put enough on, you should feel much better. I've had just that gel put on an abscess before and had doctors go cutting and felt nothing! I will warn you though, it is just a temporary solution. If you are in that much pain, consider seeing a pain management doctor.

Also consider some type of cushion to help you sit. I actually had the VNA buy me a special cushion because they felt so bad for me...hahaha. It's a special cushion that allows air flow even while you are sitting and also alleviates all of the pressure in that area and instead distributes it all over. The website is drivemedical.com but I'm sure you can find many others if you search!

Good luck and we are here if you need anything!
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