Please Read I've had one

Posted , 5 users are following.

January, got surgery, they stitched me.. It didn't work as i got a cavity under wound

So in March they cut me right back open, 12cm long, 4cm wide, 4cm deep and left it open to be packed daily by nurse.. A week later got rushed to hospital coz one of the nurses couldn't stop the bleeding etc it's been the worst 7 month of my life.. I've been depressed, house bound, couldn't have a poo normally.. Everything seemed to be a NIGHTMARE

BUT 7 month down line, it's closed.. And seems to be healing ok, I'm not back at work yet as I want scar to strengthen

But I am writing this to let any one know who is going through what I went through stay strong! Eventually u will get there! Keep your chin up

And message me to ask me anything and il help u if I can on any questions etc

Stay strong and take care ! You'll get there .

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  • Posted

    Hey Daniel. I totally understand what you have been through. I have had a karydakis flap procedure in April. But before that had two surgery's prior. Have just came out of hospital 4 days ago. This was my longest stay and this was my 4th surgery this year. It's a very hard time for me and stressful time. Had to give up my job. And the medication for pain. And constant dressing changes everyday for last 6 months have been very stressful. Am so glad to hear yours is closing up. And people need to understand what effects this has on people's life. I'm only 23 and have had this from Oct last year. And been to he'll & back. I really wish you all the best and hope things get better for you. I'm currently housebound again due to surgery again last week. But this condition is a total horrible thing for anyone to have. A feel like the doctors and surgeons have gave up with me know which is even more upsetting.
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    • Posted

      My son has been suffering since he was 19 and now 23 so really sympathise. Don't think people realise how awful it can be, massive impact on your life. We have now chosen to go private as the nhs really aren't specialists , found a great doc in London so fingers crossed this time will work! All the best
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    • Posted

      Yeah I am 26, birthday is Boxing Day and I had first surgery jan 7th then housebound til now, so u can imagine what sort of year this has been for me since bday, ppl are right the doctors and that don't seem to take this serious.. When I was going to see surgeon for check ups etc he was just like so layed back and was like it will heal eventually blabla but I got to admit.. I just couldn't see it when it was open getting packed every day.. Thee just seemed no end to it.. And when u can't se it your self you don't know how it is your just going by what nurses say etc..

      I hope u heal soon, really do.. I work on a building site so I can't go back to work yet but probs guna get layed off cos been off so long, need to change type of job really anyway so not to bothered, but chin up!

      What's the flap procedure? My wound was like bottom of my back, then went down my bum crevasse to about a inch a way from bum so I can imagine the struggle and nightmare it was etc

      Just packing it each day for about 5 month, sorbasan silver, aquacel.. Kaltozat was just at a point when it was very very bloody after the day they couldn't stop the bleeding

      Get kaltozat and keep as an emergency just in case u ever have a bleed like I did

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    • Posted

      Tell him I hope it works, I know what he's feeling etc

      And hopefully the end is near

      It's not fair getting these type of things.. It ruins some of us.. Just got to pick our selves back up !

      Good luck

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    • Posted

      Thanks so much. A really hope your son gets this problem sorted it's horrible to wake up every day with this thing and the pain. A really wish you all the luck. Am hoping that mines heals. But if it doesn't unfortunately my next step is skin graft and plastic surgery which scares me. But a would do anything to be rid of this problem. Fingers crossed for you son smile x
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    • Posted

      Hope all goes well for u and u heal asap

      Hope it doesn't come to getting a skin graft etc

      Try and keep off your wound.. Only lay on stomach, on ya bed etc or lay flat on couch.. I stayed off me side and off me bum for four or five month

      The slowly started laying on side like laying on hip bone not me bum..

      Just can't see putting pressure on bum helping it heal although each time I came out of surgery, the bloody doctors had me sat on a chair, it just didn't make sense after coming from theatre then sit me straight on bum lol

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    • Posted

      Thanks you very much. It's a stressful time ,,as I find it hard laying on my sides as my hips have began to seize up when a do this. A was on crutches there for 6 weeks but currently came off them ,, as my wound was really big after karydakis flap procedure, I'm on morphine every 4 hours which helps with pain. But I can't feel certain parts of my back or bum anymore due to nerves being cut away. I'm hopeful reading your story that mines won't get to skin graft and might start to heal.
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    • Posted

      Try laying on front.. My elbows got very sore always propped up but it was just to take pressure ofnot sitting on back or laying

      I've watched everything on Netflix and used my ps4 and probs wore it out lol 7 month of laying practically lol

      Get a decent vitamin tablet also to take daily, and try and eat plenty of protein.. I was having my gym protein shakes at one point, they say ur diet helps heal too bare that in mind..

      Let me know when u heal, I hope it's soon, fingers crossed smile

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  • Posted

    I joined this group for some help for my son who's had this problem since 2010. He had an op similar to yours but unfortunately it didn't work so had a flap procedure last year which also didn't work. He's now having a 3rd op in September. It's been awful and very painful and gruelling for him. Nice to read yr success story, I will share it with him . Fingers crossed.
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    • Posted

      While I was in the waiting room to get in for my surgery a nurse came to me sometimes to keep me company. She told me that even if the surgeon is the best and so is the surgery performed, if the organism of the person has a tendency to create cysts on its own, they can't do anything.
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    • Posted

      I feel for your son , I remember two month ago I seen this site and read some story's ( when i was wide open getting seen off the nurse everyday still ) and some of these were like horror story's and I remember just crying me self to sleep about 4 in the morning after reading the story's .. Was so low.. Try to keep your sons chin up and reassure him it will get there in the end .. I layed on my stomach for 6 month.. Didn't sit, lay on side or nothing just stayed layed to help it heal as quick as possible etc laying flat

      Good luck

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  • Posted

    That must have been really painful. Didn't you read that if you stitched it right away the chances of getting it again are high?

    I just fully healed 2 days ago by the way. šŸ˜

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    • Posted

      My opnion Is that the nhs don't see this as serious or life changing for people. , a had to quit my job and everything that a have worked for has all been gave up. It's very stressful. And it really knocks your confidence aswell. I got stitched in April after having the flap surgery but when stitches where coming out my wound all burst open ,, so I have been left with like a 12-15cm scar and since having to have surgery last week again on the open wound which was left open ,, my wound just can't heal. They have said that if it doesn't heal this time. My Last step is plastic surgery which they where gonna do last week. But a was to worried and upset. I really hope one day they can find a simple solution for this. And people would take it more serious
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    • Posted

      Yeah that's also what I noticed, they don't take it seriously, perhaps because the surgery is all that sort and stuff? But it is a serious problem and it varies. Personally I had a very hard time before the surgery it hurt so much and I couldn't do anything.
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    • Posted

      Yeah its very frustrating when no one's listens to how sore and painful it is. A just got told last week when a was I'm hospital that am going to know have chronic pain problems with my tailbone. Am currently on morphine every 4 hours and other pills. Am practically house bound because they make me ill. And am so uncomfortable at all times. Hopefully mines will start to get better soon aswell. It's good to see that people have got better smile gives me hope.
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    • Posted

      I wish you to get better soon. Don't think of it as a big deal, it's nothing life threatening and the worse case scenario isn't all that bad so have hope.

      I don't remember the pills they gave me, but the doctor told me to stop taking them if I really feel that bad, otherwise I'd be getting to hospital again. šŸ˜‚ but I had some different gauze too, with those I healed faster than with the average gauze. They are called: Askina Ā®Foam Border 16x16 cm, from B Braun. Search them up.

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    • Posted

      Yeah I don't see it as a big deal know. But it's just became a part of my life. A don't know if that's a good thing. But thibgs cab only get better from here. Been through the worst now. I wish you all the best for future. ā™” xx
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    • Posted

      You both have my sympathy, my son is really positive too, but sometimes it does get to him , good friends help! Good luck to you both, onwards and upwards! And good to discuss it with people who understandā˜ŗ
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    • Posted

      Hello, I didn't have a choice about stitching or packing it, after the first procedure I woke up stitched 12 cm's down my bum lol, but the nurse who came out the first day was like " these aren't guna work, ha can't stitch a bum creves really "

      So from day 1 I was like .. Hmmmm

      The stitches near me bum then started to tear and nightmare begun, so had to get cut back open and left open which they should of done in first place to be fair. Closed about, 7 weeks ago, then got infection and bloody opened slightly.. It Been closed now tho for 3 weeks nearly I think so fingers crossed just needs to strengthen.. I didn't realise but it's quite common in girls.. A work mate of myn got stitched 7 year ago, and it worked, only to find now.. She has 3 cavitys under her stitches.. That's what happened with myn when they tore they took the bottum two out... But it ended up creating a cavity under my stitched wound.. So needed cuting back open cos in the cavity.. Was an infection growing agen like another cyst.

      How's your situation been.. Took long to heal? Packed everyday?

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    • Posted

      Reading all your comments makes me feel furious, often these docs are way out of their depth, they should be referring you to experts in the PS field- I feel like the docs who saw my son were doing their best but def not experts. Hopefully you will both go ahead and heal properly now
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    • Posted

      I made a post about it before the surgery but I can't really remember how I named it.

      Mine started from an accidental fall, I landed hardly on my buttocks so you can imagine what happened next. We visited an orthopedic doctor he said I cracked my tailbone, nothing about a cyst. But when the same thing happened, we knew. The pain was unbearable the second time. And then it was gonna happen a third, but we had it lanced with local anesthesia cause I had to travel.

      Then on 12th of June I had the surgery, it was the most awful experience of my life, I felt as if someone was scratching my bones with a knife or something. But the pain was bearable, stayed in hospital for 2 days. I had to deal with some awful itching though! But they gave me some gauze that helped me heal faster (Askina Ā®Foam Border 16x16 and AskinaĀ®Sorb 10x10 from Braun). But I got terribly sick from the pills, I couldn't swallow anything. Now I recently healed

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    • Posted

      Your situation and the way your explaining things reminds me of myself. A only recently found out its becoming more common in women. As they couldn't understand why a kept getting them. But most doctors don't know what they are dealing with. Sounds like you have been left with a huge scar like myself. My scar tissue still not healed and still have an open wound which needs dressed 2x a day right know. It's good to hear people being positive regarding the situation this gives me hope things will get better. smile
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    • Posted

      Were u awake? U say the pain was unbearable..?

      I was put to sleep both times .. They cut me so deep, 4cms

      I lost all nerves

      I haven't felt nothing in the 7 month even when they were packing it.. They said ppl normally climb the walls whilst getting something packed like this but I haven't had any, cos of nerve damage, gues that was lucky in a sense

      Now u mention lanced.. About a year before these surgeries I got it lanced to skin level in local doctors but in the month a was off work for it to heal it grew back believe it or not, that's why I had to go in hospital and get it done properly like deep etc

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    • Posted

      2 times a day? Does it bleed quite a lot or ? I only ever got dressed once a day.. They say the less u touch it the better etc but obv if it's bloody or weeping puss, needs fresh dressing due to infection in the area it's at

      My scar tissue seems to be getting there , part of the wound broke down but 80% of wound healed and closed.. Now the part that broke down as healed and now needs to catch up to the other part what's been healing like 6 weeks, the part what was open as been closed 2 and a half weeks now.. So just hope it stays like this.. Guna start trying having badidas baths soon, at moment only just started showering the wound..

      I only started sitting one week ago, half hour at a time.. Cos my bum feels so weird like bum cheeks feel tight cos scar tissue doesn't stretch much, so when I sit, my bum feels like flat, and lead.. Really hard to explain lol no one understands when I try to explain to family.

      You need people being positive cos all u normally hear about these is horror story's! Glad I've done this now, feel I've give ppl a bit of hope

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    • Posted

      I think I'm going to start having badidas baths now

      Nurses were saying it good for wounds, scars, etc

      And they said women use it like when had stitches after giving birth, so it sounds good for our problems we've had wound etc

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    • Posted

      Hello is your wound still closed?.. We spoke a few month back

      Myn finally closed a month ago then it's opened and been open for the last 3 weeks and infected for 3 weeks aswell can't get it to close, and can't get rid of infection cos it's inside my cheeks were no fresh air gets there sad

      Hope to hear yours is still closed!!!!!

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