This is going to be a long post and please know that I am in no way saying the team are bad at what they do or these issues will happen all the time - I just had such terrible care in my experience.
I felt slightly pressured into abdo by Mr Christopher at my consult but he kept telling me it would give me the best result (I already have a skin graft and reduced sensation in parts of my dominant hand due to a burn injury, losing sensation in the other whilst I was having to use it more was something I was worried about) so I went with it. The plan was to go the whole hog, urethral lengthening, erectile device etc. I've only had stage 1 right now.
Intially I was really pleased with the results (when I first came round) it all went downhill from there with the aftercare.
I had 3 drains in, they removed 2 of them 48hrs post op even though all 3 were still draining. When they sent me home I had 1 still in which was still draining 500ml in 24 hours (a whole bottle) I shouldn't have been discharged like that, if they hadn't sent me home that way I think things would be totally different. I was assured it would stop within 2 days and they sent me home with 2 bottles.
In less than 48 hours I had gone through the bottle I was sent home with and the 2 they gave me, I had nowhere to get any. I urgently messaged them and they said to go to London the next day. I went and was assured by the nurse it would be fine, Cecil went across to the main hospital and got me 2 bottles. At this point there was weeping either side of my main incision but I was told this would stop.
In less than 48hrs after that 1 bottle was full and the second part full but stopped working as the suction had stopped from the drain site - it had been in so long that it was widening the hole where the tube went in. I was told it would be fine if I just taped the hole tight to recreate the seal - but the drain bottle itself had then lost suction (and you can't reset them)
I left a message as it was now out of hours. Early hours of the morning I stood up off the toilet and had a ripping sensation in my stomach. A hole each side about the size of a 10p had burst open and was pouring fluid. I had to go to A&E as I had no fluid drainage, no appropriate dressings to stem it and staples had fallen into the wounds.
A&E didn't really want to touch it. They got a surgeon to bring up 2 bottles from theatre (although the largest size they had was 400ml) sealed the drain site with a film dressing and put dressings on the wounds after taking the staples from that area. I was told to contact the team ASAP.
Next day I ring urgently, I'm told to come up the next day but they don't seem to see the urgency despite photos. I go up and the nurse doesn't really know what to do so puts stoma bags over each hole as they had apparently done that before. Sent me home and on the tube back I notice there is fluid all over my clothes - there was too much fluid for the stoma bags to stick. They had given me 2 more so I redo it at home, a few hours later they fall off. By this point the holes are getting larger and larger.
Once again I go to London, they remove the drain as the hole is now so big there's no way it'll work (and it's by now really painful - side note the scar from it is the size of a 50p) the holes are huge by now and fluid is constant. I see Mr Christopher for the first time since I was discharged, he walks straight in while I'm on the bed, jams his fingers in the holes with no warning and 'pops' the scar tissue on the inside. Myself, the bed and my clothes are covered in blood and fluid, no time to prepare - I have to go home like that.
He tells me 'it's normal, I once had an older guy whose whole stomach split open, this will heal fine'
By now I also have infection in the lower wound and base of the phallus, the phallus was also stitched too tight so it's burst like a sausage.
I won't bore you with the rest but the next 3 months were spent on antibiotics and going to my local hospital every day (Christmas included) to have my wounds washed, packed and dressed. 4 months post op my wounds finally close but are horrifically scarred.
My phallus scar is 2 cm wide at its slimmest, 3cm at its widest, the scar tissue is so thick at the base that its tethered and will only 'pack' in one direction. The crease where it does so is permanently red, angry and sore. It's so scarred that it's solid and I have to wear at least 2 pairs of tight underwear to hold it down else I appear to have a permanent erection.
My main abdomen scar is too high and sits above or on waistbands - it constantly rubs and is really sore. There are large dog ears either side that catch on clothes and constantly hurt. The Scars where the holes were are tethered, tight and extremely painful. I have huge stretch marks from where my abdomen swelled so much and was staples so tight. The staple Scars are plain to see.
To make it worse, Mr Christopher now doesn't want to do the full stage 2 as he is worried the UL won't work. The next op can't be stage 2 because they need to repair the damage although not much can be don't except cutting the tethers. This means it'll be years before stage 2 (it's already been a year and a half since stage 1 and will be over a year until they operate again) and I may not ever be able to stand to pee which is the only real reason I opted for phallo.
I hate it, I hate the whole thing. If I could take it back I would, I wish I had chosen forearm. I look at it and wish I had never done it. After the euphoria of going topless to swim after top surgery, I'm no longer able to without showing these hideous Scars. Please know though that others have had abdo without these issues and I am not trying to speak for everyone, but if you have surgery with the London team please ensure you're getting the right aftercare, if something doesn't seem right with what they're doing then question it. If they hadn't discharged me at that point then they could have drained what was obviously a growing haematoma which led to huge wound breakdown.
I'm asking for a second opinion from Mr Ralph on how to move forward as I no longer trust Mr Christopher and I'm not happy with his plan going forward
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