Because I just need vent my frustration and hopelessness!

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Re: Because I just need vent my frustration and hopelessness!

Postby jr2 » 12 Dec 2012, 23:08

Sue,
So sorry you are back with pain and now another problem with the pilonidal sinus. It jst seems like these problems are never ending for some of us. My saga is long and drawn out too, but I just want to jump in now regarding taking amitriptyline. Yes, it is very common to use this for nerve pain. Be very careful with it as one of the main side effects is constipation! I don't know what you currently do to ensure soft, reguar stools, but you may need to make some adjustments to avoid constipation.
Please keep us posted.
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Re: Because I just need vent my frustration and hopelessness!

Postby owmybum » 13 Dec 2012, 05:15

Sue,
Sorry to hear you have been diagnosed with something else on top of all your other problems. I really hope it gets sorted for you.
2 years is a long time to put up with constant bum pain.... I am nearly at that milestone myself now... But try not to loose faith and do everything you can to keep yourself comfortable.
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fissure after hem banding and tag removal feb 11
Pelvic floor therapy
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Re: Because I just need vent my frustration and hopelessness!

Postby Sue27uk » 16 Dec 2012, 16:01

Sweet, thank you so much! I had quite a bit of pain today but its gone as quickly as it came. I'm still getting some discharge and the scary thing is it seems to be coming from the left hand side of my anus where the guy operated 6 months ago, he checked in september and said it was healing so it can't be an infected area there can it?! JR, thanks for the tip, no problems as yet. I am still taking my stool softener and lactulose, been unable to stop after the op. OMB, thank you for your support. I feel like I had a bit of a meltdown today after the pain but had a painkiller and its eased. I don't know what to do really, I am 2 days into a week course of antibiotics. If I go back to my GP they'll say finish the course. If I go back to my CRS I won't be able to see him until after christmas anyway. But I don't want to get ill over christmas, where there will only be basic stff on at the hospitals. I suppose the only way to go is finish the course of antibiotics and if I'm still having problems go to the GP on Thursday or Friday and see what they say. I may be worrying for no reason, I'm sorry for this long and rambing reply. I just feel confused and worried again, trying not to freak out :(
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Re: Because I just need vent my frustration and hopelessness!

Postby Davo » 17 Dec 2012, 09:12

So there i was flicking through my internet favourites at work and i thought i would have a quick look at the forum to see who was still about.....
Sue, Sweet.... I thought you guys would be home, dry and clear by now - I'm so sorry that you are both still struggling with this ghastly thing and you both so, so deserve to be over this by now.
Sorry I can't give you any advice but i really hope this gets resolved very soon (and you too JR2)
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Re: Because I just need vent my frustration and hopelessness!

Postby Ever the Optimist » 20 Dec 2012, 03:54

Sue,
Sorry I've not been here for a while but truly sorry to read you've been blessed with yet another issue! So sorry - you've been struggling so much this year with it all but like the others on this site, you all have so much courage and determination to just get on with it. I have so much respect for you all. The link with the coccyx pain and pilonidol cyst would make sense but you might remember, I had the same issue before diagnosing my fistula. 3 GPs told me it was pilonidol. Only the EUA confirmed the fistula.
The cyst can be easily treated, even though totally appreciate it will mean a few more weeks of discomfort and recovery. Bless you........I so hope 2013 will bring you the break you need with all of this and to everyone else too........
Try not to stress too much. The antibiotics should clear any potential infection and you do need to take them. Take things day by day and Xmas or no Xmas, there will be emergency medical help at hand should you need it (but hopefully, you will be absolutely fine)...
One thing at a time... and it's natural to be worrying with what you've been through, but you will be OK xxxx
Chronic Fissure diagnosed December 2011
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Anal Fistula followed burst abscess in June 2012
2 internal troublesome piles remain & suspected, but undiagnosed, ongoing Levator Ani type symptoms & flare-ups
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Re: Because I just need vent my frustration and hopelessness!

Postby Sue27uk » 24 Dec 2012, 09:36

Hi ETO and Davo, good to hear from you guys, though obv not in this situation! I went to the docs again today as the drainage has not totally stopped. As it's christmas he said he's guessing I don't want to be in hospital so told me to keep taking the antibiotics. He's booked me in for Thursday first thing at the surgery to be referred to the hospital if he's not happy. With my symptoms and the fact I'm not feeling well (sickly and too cold/hot) he thinks its an abscess that needs draining. Apparantly it must be deeper in the tissue as he can't see anything on the surface but can see how much pain I'm in. At least if it gets sorted now then I can get back to better health in 2013. Thank you again for all your support. Hope you all have a fantastic christmas and I will update soon when I know whats going on :)
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Re: Because I just need vent my frustration and hopelessness!

Postby Sue27uk » 29 Dec 2012, 15:41

Well I can honestly say I feel like giving up. My GP was happier when he saw me on Thursday and I felt better. Tonight I feel I am right back at the start with intense pain on the left hand side where my fissurotomy and original fissure was. Only I have the added bonus of terrible pain by my coccyx too and some nasty looking stuff coming out despite being on antibiotics. I'm crying again as I type this, I know I can say this here as people understand. I feel so miserable to be starting the new year like this again. I suppose I'll have to get back to my CRS asap but as he was private I'm starting to look at getting a whole load of debt on top of everything else. What can I do? Wait for 4 or 5 months on the NHS or pay to see someone. Failing that I hope to go to my GP in the hope he will just send me to the A&E/CDU department of the hospital. I have an appointment for Thursday at which I intend to ask to go back to the CRS. It all just feels so hopeless, I am in more pain now than I have ever been. What do I do? I'm nearly at the 2 year point and it all feels totally hopeless and useless :( :(
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Re: Because I just need vent my frustration and hopelessness!

Postby owmybum » 30 Dec 2012, 11:04

Sue...I am so sorry you are still suffering so much. I think here in the uk the drs don't understand the urgency to get this thing sorted out... Believe me, if I could afford to go private I would...I am approaching the 2year point too.
Could you try getting your doctor to get hold of your nhs crs and ask for an urgent appointment? Did you see a nhs crs first? Have you still got the secretary's number? You could always call and ask her to speek with him and get some advice .... I have done that plenty of times.
Just know you are not alone and we are all here to offer a shoulder to cry on when things get so unbareably tough.
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OMB x
fissure after hem banding and tag removal feb 11
Pelvic floor therapy
Diltiazem
Botox June 13
Nitro
Internal flap July 14
EUA and polyps removed Nov 14
Diagnosed with neuropathy Jan 15
Diagnosed with HS EDS type 3 (causes poor wound healing )
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Re: Because I just need vent my frustration and hopelessness!

Postby thisfissurecankissmybutt » 09 Jan 2013, 14:20

Hi Sue:
I am sooooooooooo sorry you are still in pain. However, I do have a suggestion. Before my fissure, I was diagnosed with Levator Ani Syndrome (LAS), which is basically where the Levator Ani muscle goes into painful spasms that lasts for several hours, primarily following a bowel movement in my case. My doctor tried everything, from biofeedback to muscle relaxers to antidepressants to steroid injections to physical therapy. Nothing really helped. My doctor then prescribed Benztropine, which is a drug used for Parkinson's patients (it helps reduce the tremors). My doctor wanted me to try it as a second line drug and it has been a lifesaver for me! You mentioned that your doctors thought some of your pain could be caused by muscle spasms, so I thought you might want to ask your doctor for some Benztropine. I can't imagine life without it. It completely stops the spasms and worked from day one.
In any case, I hope you find some relief soon.
By the way, what do you think about the Amitriptyline?
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Re: Because I just need vent my frustration and hopelessness!

Postby Sue27uk » 21 Feb 2013, 13:58

Hi thisfissure, not been on here in a while. Well I can completely say the amitriptyline has been a dream and my skin complaint is completely resolved. I am much more comfortable (thank goodness). My bum problems rumble on (well coccyx), had an appointment today. My GP has pushed it through I think as I only had to wait 5 weeks for an NHS appointment. I didn't see the CRS I saw privately, but went to his clinic and saw another lady who was really good. We discussed my situation and she did an examination. She concluded the problem wasn't actually mainly in my back passage but over my coccyx, and that there is no sign of any fissures. She thinks its an abscess or something related. So I have another MRI booked as high priority, she said once I have that they are having me back in and if it shows nothing they are doing an EUA and if they find anything during that they will sort it there and then. So its positive! Whatever happens, I think my GP has really pushed it through, don't know what he said but its got the hospital jumping. The lady said obviously I have been suffering for a couple of years now and they would take every step to sort it promptly due to the length of time I have been having problems. I am hoping they can sort this by September and my 30th birthday!! I hope all you guys are feeling better. Hows things with everyone? :)
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