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I haven't been on this for a couple of month now.. how's people getting on who I spoke to previously

Posted , 3 users are following.

danielnortheast
danielnortheast

Hoping to hear yous have healed.. with me not been on this for a while.. hoping to hear positive messages because this piolnidal synis problem is a fooking nightmare...

0 likes, 19 replies

19 Replies

  • gill09
    gill09 danielnortheast

    Posted

    Hi there! Ok so my son had last op 1st Sept. Healed really well, down to final bit, about the size of a thumbnail. This is proving harder and slower to heal, still uninfected tho and clean. Just stubborn! I'm cleaning and dressing it daily still and hospital next week for check up . How's things with u?
    • danielnortheast
      danielnortheast gill09

      Posted

      Hello Gill. .so glad to hear his has nearly closed.. I know how depressing these things get you.. since I last spoke to you we've had our little baby girl 23/1/2016 and that has give me a bit of a lift cos she's perfect smile.. as for my wound.. back in November December. . The tissue viability actually got me wound to close..used trimavade cos they said it's just over healed so they thinned it with this cream. .. so I was over the moon BUT then.. little holes appeared. .and little grazes.. and I was just so confused.. been back to see tissue nurse twice and she seemed a bit blunt with me saying I am causing the break downs getting my gf to spread my bum cheeks to dry wound and apply some e45 cream... after shower..

    • danielnortheast
      danielnortheast

      Posted

      So now I am just drying my self with a thin cloth.. and then trying to put cream on my self without spreading my bum. . It's tricky though and it's always bleeding but not loads just signs of pink stuff there..not like thick blood or anything and it's not like fully open it looks more grazed or like a blister were the skin as came off the blister.. it's weird .. would be much easier for ppl to compare if we could send photos on here haha
    • danielnortheast
      danielnortheast

      Posted

      I'm starting to accept this might be as good as it's going to get for me with the area inside my bum cheeks always warm and sweaty..maybe it never will be fully normal again cos it's always going to be a hard area to heal fully.. I have quite a chunky but and me girlfriend thinks that that's probs the problem cos it's closed together when sitting etc.. so my next thing to try is to get on the slim fast or something to get a skinny arse haha.. since January 7th last year life hasn't been normal.. but I'm just hoping it's not far off fully healing now cos a year and 2 month is n long time to feel abnormal lol
    • danielnortheast
      danielnortheast gill09

      Posted

      I've had to send my msg back to you there in 3 different things cos it was saying error

      So not sure whether it's worked to u.. there should be like 3 replys I've riten to you smile

    • gill09
      gill09 danielnortheast

      Posted

      You have certainly been thru it but lovely baby news! It's such a horrible thing to deal with and I agree where it is makes it so had to heal. I'm still doing my sons butt daily and it can't be great for him that he always has to factor this in to his daily routine. We shave the whole area weekly too. It is a shame we can't share pics! My son said that although I'm doing this group not him, he has found it helpful to know that he's not the only one dealing with it and said he doesn't feel so much of a freak lol. All the best!
    • danielnortheast
      danielnortheast gill09

      Posted

      Shaving the area?... I thought that is what causes these some times.. was it a doctor who advised u to do that as well ...

    • PlymouthPete
      PlymouthPete gill09

      Posted

      After my experience I wouldn't shave the area, the hairs might grow inwards again.  I had 6 rounds of laser hair removal and it didn't make it any better so don't rely too much on it.   
  • PlymouthPete
    PlymouthPete danielnortheast

    Posted

    My situation has just gotten worse.  Had an outpatient appointment and was told that I really am that unlucky.   The last operation failed so I am waiting for the next appointment to be let down again.
    • danielnortheast
      danielnortheast PlymouthPete

      Posted

      Unbelievable.. they seem to really struggle with these and the things they have and the knowledge these days u would think this would be so easy to fix...

      What's the problem u have like what op did u have

      I just was cut straight down my bum cracking were I read on here most ppl get a flap procedure or something..think i seen it on a episode of embarrassing bodies..the lad on there had a flap procedure done too.. I never myn was a cut 12cm straight down bum cracking. .4cm deep..

  • PlymouthPete
    PlymouthPete danielnortheast

    Posted

    I have had a flap repair and that didn't do anything to help.  Had pretty much everything they can think of and it is worse than its ever been, and am now waiting to see what they come up with next.   All I want now is for the whole area to be cut out and let it heal with a vac dressing again as the 2 times I've had one it healed closer than any other procedure.   Because of the amount of time that the skin has been folded, moved, stapled and stitched I have lost a lot of movement in my left leg as they skin is so tight in the area that I can't lift my thigh past 45 degrees.  

    After 9 years though I just got told this week that there is an infection control team and they might have better ideas. 

    • danielnortheast
      danielnortheast PlymouthPete

      Posted

      Your story is unbeliable mate. Truly feel sorry for u I thought myn was bad.. I got cut and stitched and that didn't work it just created a cavity under me stitches. 2 month later I was cut and left open n packed everyday.. that's where I've got to today.. it won't fully heal so am normal again but it's probs best it's guna be for me. Just guna after accept little grazes bleeding and little holes appearing in it I guess..as long as it doesn't fully open and pour with blood in have to be happy with this I think.. it's just make to think that these can go like this.. me dad has just had half his kidney removed.. due to a cancer tuma. . And his 15 or 17 cm long stitched scar healed within a month.. it's just the area were ours is mate is a nightmare To get a clean heal..
    • PlymouthPete
      PlymouthPete danielnortheast

      Posted

      I had my appendix out last year and it healed really quick so it's not that problem. See your GP and ask for gauze swabs on repeat prescription,  folding a couple up and using that on the area is the best thing I have found as they can be changed whenever you need and they do a better job than anything else.  I would try not to use cream on it as it makes the wound very moist and that is the biggest worry with a sinus, and use a PH nuetral body wash so it doesn't get too nasty.
    • danielnortheast
      danielnortheast PlymouthPete

      Posted

      Tissue viability nurse was one who advised me as well to use a moisturiser after shower

      So u found that made things worst eh

    • PlymouthPete
      PlymouthPete danielnortheast

      Posted

      Yes, a lot worse.  My VTN told me not to use any cream or moisturiser as the area is already wet enough due to the area, and to dry it really well with a hairdryer if necessary.  

       Just a question though,  how far is your sinus away from your anus?  I know it sounds strange but mine is 2" away, and it started near my tailbone but has got lower down after each operation.

    • danielnortheast
      danielnortheast PlymouthPete

      Posted

      My lump/boil/access if that's what the synis is..that was at the top of my bum cracking. . Nightmare was like a grape on me skin...but the surgeon as cut me from there to a inch away from bum...saying underneath skin that was how far it was spreading so u can imagine...when I was cut open going for a poo the blood what dripped into the toilet we unbelievable.. was so scary..so I don't know where my synis was..but they've cut me from inch away from my anus. ..right up bum cracking. .toileting top of it. Like your coxcyx. .. that's were the lump/boil/ thing was

      Me and our lass just thought it was a boil

    • gill09
      gill09 danielnortheast

      Posted

      Feel sorry for both of u. My son's was also about 1-2cm away from anus. Toilet was and still can be nightmare. In beginning also blood dripping down loo. Scar now stretches about 5cm above top of crack. His sinus went in and up . Nightmare. Def need to keep dry and not moist. We have used aquacel Ag strip tape stuff with gauze then a mepore dressing. Doc said use breathable stuff so it seeps if necessary, def not waterproof dressing

    • PlymouthPete
      PlymouthPete gill09

      Posted

      The scar from the rotational flap repair goes from my anus all the way in a semi circle to my left hip where my thigh meets the pelvis,  was about 20" long in total and it was horrific.  I think after all this time I have got used to blood when going to the toilet.  Thats life, well, for us.
    • gill09
      gill09 PlymouthPete

      Posted

      Omg u poor thing. That's horrendous. It's a shame that this awful problem isn't more widely known so u sufferers can get more help.
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