I just don't know what to do anymore........

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I just don't know what to do anymore........

Postby sue30uk » 12 Jan 2015, 13:46

I haven't been on here for so long as I felt I haven't needed it (if you now what I mean). But I'm really struggling at the moment and don't have a clue what to do. I have been through 5 operations in the past 4 years including abscess, fistulas, fissures and all have been successful to a point. They have now discovered I have another fistula which I am awaiting the operation for, which has been fine. Unfortunately now I am in alot of pain again. Between my genitals and back passage my left bum cheek has slightly swollen, I have horrendous pressure and feel like I am sitting on a ball. Last Tuesday, the doctor gave me flucloxacillin which appeared to be working as he thought it was an abscess. I have had to go back today as it is throbbing almost constantly and I got no sleep last night. I saw a different doctor today and she gave me different antibiotics to try and told me I needed to go back to work and sit on a cushion. I am so unconfortable, every time I wee or poo it kind of spasms. I just don't know what to do and am starting to feel so low again. I'd request to see a private surgeon (as I have done once before) but don't know if it would be a gynae issue or CRS, plus the doctor said what I have may be related to my fistula. However this is in a totally different area of my back passage and has an internal opening. There is nothing really to see except slight swelling, no abscess she could feel. Any advice would be helpful. I have had to say I'll go into work tomorrow but can't see how I am going to get through a day, never mind the rest of this week :groan: I was just starting to get my life back a bit and then this happens. It all feel so unfair. :~!@:
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Re: I just don't know what to do anymore........

Postby msimon » 12 Jan 2015, 14:48

Sue, I am so sorry to hear you have been through so much! These bum issues sure can be torture. I wish I had some advice for you but I am not very familiar with fistulas. What about an exam under anesthesia? Or an MRI to see the path of the fistula. It sounds like another fistula will require surgery? I know it is so unfair but hang in there. It will get better again. :hugs:
Dec '13 Fissure from anoscope
3 X internal sphincter botox
'08-'15 Botox for pelvic floor dysfunction
Nov '14 LIS/sentinel tag removal
Feb '15 Deroofing of recurrent infection from LIS
summer '15-healed but still ongoing muscle dysfunction/pain
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Re: I just don't know what to do anymore........

Postby owmybum » 12 Jan 2015, 15:29

Hi sue...... I'm so sorry to see you back on here... It sounds awful!
I'm sorry I can't help you with any fistula info..... That's something I haven't had to deal with ( about the only thing)
I agree with msimon.... Sounds like you need an EUA or a scan of some sort to see what's going on in there.

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: I just don't know what to do anymore........

Postby Dewlilly » 15 Jan 2015, 11:47

Hi Sue sorry to hear u are having problems again ... I had a fisutla and the track on mine was pretty long so different parts would attempt to heal trapping the puss/discharge in sections and my bum cheek would become reddish, warm and swelt... I would have to lay in the tub with as hot water as I could stand and try and things to start following again ... Most times I would have to lightly squeeze my cheek to get things to pop and the flowing would start again ... I would actually feel the pop/gush of it and then the drainage would usually back it self out my rectum rather then the opening of the fisutla .. The opening I would have to kinda peel open so stuff could drain ... Sorry if this info is more then u wanted to know ... Lol hope u get some answers soon and some relief too ... Take care and keep us updated
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Re: I just don't know what to do anymore........

Postby tll » 16 Jan 2015, 12:08

Hi Sue I am so sorry to hear of the pain you are going through. I can so relate though. I have had a fistula now for 18 months and they kept diagnosing me with something different besides a fistula so it kept getting worse. I had 4 different Drs tell me different things never once did they look for a fistula and I too was in so much pain it was unbearable. So I found a colo rectal Surgeon he finally after examination told me I had a fistula he put in drains and then did a lift procedure which failed and separated so making it even a bigger fistula, he ended up not being a good Dr either so I switched to one of the best Colo Rectal surgeons in the area he has been working with this fistula now for over year trying to fix what the last Drs messed up. I have had a drain in for about 8 months now and I have had 7 fistula surgeries so far and back in Sept he decided to do a Ileostomy because none of these surgeries are working he said I have a huge cavity and he decided to do the Ileostomy that way I have no bm to keep getting bacteria down there. I went in 2 weeks ago to get a reversal and he still found a pin sixe hole that he did surgery on again praying that was it. I go back Feb 23rd under anthestetic to see hole closed up I still have in the drain, but hes trying to get the hole at the top to close so no more bms come out when he does the reversal. I have not been able to work since Sept. I feel for you I am right there with you and if you have any questions or need to talk please do. Also, they have done biopsy after biopsy and I have nothing that would have causes this as far as like Crohns, Ibm, Diverticulitus or anything.
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Re: I just don't know what to do anymore........

Postby sue30uk » 06 Feb 2015, 16:19

Thank you for all your replies, I'm sorry to hear about your problems tll and really hope you can get something sorted on the 23rd. I appreciate the support and will definitely be checking up on how you're going, it sounds like we both have suffered for far too long. I'm not sure exactly how big/long the fistula is but I guess I'm going to find out! After my last post I ended up at the hospital, more antibiotics which I am still on. I am due to go in for my operation and EUA on 12th feb when they aim to sort the fistula (which is a low fistula, I'm not quite sure what that means). They have also found a sinus (though not sure they are doing anything for that at the moment) and intend to inject botox for fissures. At my pre-op I told them about this other suspected abscess and they are checking at the back to make sure it's not there. If it's at the front I will have to go back to gynae folks to see if they can sort that out. It's just neverending at the min, but at least if I get next week over and start healing that there is hope for the rest. I am starting to feel a bit better in that one thing is being sorted which may make it easier to deal with the other stuff too. I have been back in work but only got through with painkillers and antibiotics. I am lucky enough to work in a school and this operation has come through just for half term hols so at least I will not have to worry about sick pay etc for a while and concentrate on getting better. Fingers crossed this new pain is from the back and they can sort it out! OMB, good to see you on here (well you know what I mean!) :) xx
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Re: I just don't know what to do anymore........

Postby tll » 06 Feb 2015, 21:11

Hope they get it all good for you. My Dr has never gave me antibiotics. Pain pills yes I do take when I need them. Praying this is all under control so I can get my reversal the 23rd I will keep u posted.
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Re: I just don't know what to do anymore........

Postby sue30uk » 24 Aug 2015, 13:33

Hey its been a while since I have been on here, hope people are ok? I had my operation and it was successful, sinus gone! Then had gynae issues and have re-torn a fissure. So going back tomorrow to see what they say. I have gone private to see a gynae and she thinks I have problems with pudendal nerve (which may explain some of the problems colorectal-wise. Also may have PCOS so they are trying to treat me for that. I am getting there and have more confidence in the colorectal people and the gynae lady now. Had a bad week last week emotionally after an awful NHS appointment but hopefully things are headng in the right direction. Trying new meds etc. How is everybody? :) xx
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Re: I just don't know what to do anymore........

Postby Savaici » 24 Aug 2015, 19:32

All is well! So good to see you 'on' again, though wish everything was 100% for you. Thinking of you, Sue xx
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Re: I just don't know what to do anymore........

Postby owmybum » 25 Aug 2015, 08:04

Hi sue.

I believe I have the same problem.... Pudendial nerve damage from all the surgeries I have had.
I am in alot of pain both rectally and in my coccyx area.
I'm currently waiting for physio... But have been seen by a dr Andrew Baranowski in UCHL.

What meds are you taking? What operations did you have??

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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