Hitting the wall

This is a bit of a “woe is me “post, apologies in advance.

 

I have always been very confident about my stoma and scars but this last surgery has knocked me for six. I am feeling very body conscious and not just with stoma and scars, I am now finding fault with other body parts too and I think I haven’t got over how my body has changed. Having a stoma has made me feel well but because I feel well, I have gained quite a bit of weight which I hate and am still trying to to get fit by going to the gym. I feel better for it but am not seeing a difference which is disheartening.

My brace has now come off but I am now picking issues with scars and lumps and bumps. When I have tight trousers or leggings on I can see where the muscle was taken from my buttock and thigh with an indentation. I hadn’t realised the scar would be so long either and wasn’t really told. I also hate the way my abdomen scar really dints in like another belly button lower down. There isn’t anything I can do about either which is frustrating.

My stoma is causing issues again with leakage in the middle of the night due to the fistula, my skin is also reacting with the bag causing an itchy rash. I am scared to have the surgery to repair it and can’t afford the time off work.

All of this is just so damn tiring, I want my mojo back and am hoping that spring / summer will be a better time.

 

The never ending story

 

 

December

Recovery is very slow at the moment because my wound from the IGAM flap surgery is still healing. I have had two patches that have opened up and the second one is still being dressed daily. I have been told to stay off my bottom as much as possible to give it chance to close up.

Things are very tough and mentally draining. The constant leaking from my other orifice is probably on balance the worst of the two evils because I don’t have an answer yet as to why I am still leaking there. No one is keen to take a look yet so I will still be like this for a few more weeks until I eventually get an appointment through to see my colorectal surgeon, then of course there will be more of a wait for tests, then more of a wait to get back for the result, ( been there too many times to be optimistic ).

I am prone to random bouts of tears, suppose this is normal after a large surgery when things haven’t healed as quickly as expected but I am sure I will be right again soon.

My buttock / thigh scar is still looking ok although I have large patches that are still numb and may well stay numb but also quite painful at times like someone has booted me up the backside . I do find that I can’t sit for long anyway before it gets uncomfortable ( and it increases the leaking ). As the swelling has gone down I can now see and feel where the muscle was taken from that area, it feels very strange and from the side I am sure my buttock looks square.

I have no idea whether the leaking ( with blood sometimes , and not just a bit) is serious or means things haven’t worked, but finding it difficult to get hold of the right people to ask it a huge task.

I have decide to reduce my hours at work which I know is the right thing to do, at the moment I am on reduced hours until I feel up to normal life. I had to go back to work as I was getting brain mush from crap daytime TV.

Looking forward to a few festive days with my family, and I hope all my followers and readers had a fabulous healthy happy Christmas and New year.

January

Leaking has calmed down a lot and my bottom feels fine, so feeling that bit better about it all, long may it last. Still feels weird down there though so will see over the coming months if things are genuinely on the mend.

 

Muscle flap surgery recovery -part 2

It has been four weeks since my surgery and some aspects are going well whilst others that I am struggling with and don’t know how serious it is,  who knows as I can’t get to see anyone until 6th November.

The scar on my buttock and thigh is very neat , it has opened up right near the flap by approx 2cm x 1cm, which the district nurse is dressing daily, but the rest of the scar looks pretty great and I am sure in about a year if will be exceptional. Some parts are still numb an other areas are quite tender with nerve endings and when I walk upstairs I get a weird sensation of pulling and twinging I assume it is where the muscle is missing.

I am feeling stronger after not being able to sit for 4 weeks ( that was hell on earth as I couldn’t lie down on my right side for two of those weeks  due to the wound and drain site )

The following, I hate to say does show the NHS in a poor light. I love the NHS and it has done a lot for me, but it has also been a nightmare at times, not the people who work there,( although there have been one or two questionable employees whom you wonder what on earth they are doing in a caring profession with the general public)  just the systems that are in place. They are dreadful with next to no way of getting in touch with anyone who has answers to questions you may have regarding your surgery.

When the wound was checked initially in the earlier days there was some discussion with the district nurses as to whether the flap had opened up slightly, this was a big concern and they rang my GP to see if he would come and take a look. Based on the complex surgery he was reluctant to know what he could do anyway so arranged for me to go to the surgical assessment unit at the Queens Medical Centre. This was utterly awful from start to finish…

  1. Because I wasn’t allowed to sit at all ( I was 10 days post op) I had to have an ambulance, which I waited for four hours. ( Again all the actual staff were second to none for care, the ambulance men in particular were amazing)
  2. I was put in a triage room ( this was at about 7pm) no one came to see me for a good 45 minutes, not even to say hello.
  3. The actual room was not clean. The last photo was of some suspicious droplets from the bed to the toilet.
  4. I was eventually seen at 1am by the doctor who said the wound was fine. So all that for absolutely nothing, on an uncomfortable trolley bed on my side. I eventually was told by my plastic surgeon that he had explicitly wrote on my notes that if there was any query about the wound I should go to the City hospital wound and dressing unit. !!!!!!!!!. I also needed to wait possibly another 4 hours for an ambulance home. All this being 10 days out from major surgery, again the staff were apologetic but the system was not set up for post surgery patients with possible concerns that need attending to quickly.
  5. As it happens my wound did open up but not at the flap but just near it so it is fine for district nurses to sort for now. But I started with a different symptom and that was leakage from my lady parts. Was this normal ? what should I do? plastics said they couldn’t deal with it as they didn’t repair that part, but trying to get hold of my colorectal surgeon is something on another level. Unfortunately for me he is semi retired so is not there very often. His secretary emailed him and he said he wanted me in clinic the next week, but as things don’t run smoothly for me, the appointment was made for two weeks instead ( he wasn’t in the trust the week he suggested, you are probably thinking as I was, why was I told he wanted to see me the first week when he actually wasn’t going to be there), his secretary said no one else would be able to see me, ( how does she know this without asking?) and when I asked for her email so that I or district nurse could send some photos she wasn’t exactly happy about it and said she didn’t have one that was secure and gave me an unmanned one from someone who was leaving soon ” But you can’t send photos willy nilly, just this once” yes miss. If there was even a small chance that the surgery hadn’t worked as planned I would have thought they would be fighting over them selves to get me looked at, but alas no.

So as it stands at the minute ( or sits haha) I am waiting to see my surgeon to see if my leaking is normal or not. It certainly feels strange, a bit like it did when I had the fistula so am concerned about the wait, I think there should be someone or some way to get hold of someone quicker if things aren’t necessarily going in the right direction.

Muscle transfer and flap surgery recovery IGAM flap

WARNING- This post has surgical wounds.

I have just had a big surgery for a perineal vaginal fistula.The procedure is known as an IGAM flap. Inferior gluteal artery myocutaneous flap reconstruction. I had a wide excision so that my surgeon could clear the fistula and unwanted tissue and repair the vaginal wall, then muscle was taken from my buttock and top of thigh to fill the dead space, where a flap of attached tissue was laid over to cover it, and stitched into place, this ‘ paddle’ as they called it, enabled them to view the wound regularly to make sure the flap was working and no tissue necrosis was forming.

DAY 1- SURGERY DAY- PART 1

I set my alarm for 5am so that I could drink the rest of the pre-op drinks.  I didn’t need the alarm. My nerves are just starting again so I watch The Real A&E in the hope that it takes my mind off my problems.

Weird being up and showered by 5am, don’t normally see this side of 7am unless I am going somewhere hot. No bikini where I was going.

Nerves were kicking as we made our way to the ward. I was prepped and ready to go. Usually I walk with my pillow and anti slip socks down to the theatres but this time I was in a brand new theatre further away so got to have a ride on a bed. I was given an epidural for after surgery pain relief, which took a few goes because of my ” Wonky back”, anaesthetists words, as was ” Did you know that this kind of surgery is very painful?”. Thanks for that. The oxygen mask came next, not keen. It reminds me of horrible teeth extraction as a kid with the gas. I can still smell it. After a few stabs in my arm, a vein was suitable and a few minutes later I was asleep.

I remember waking up and being told that surgery was finished and all went according to plan. I wasn’t in pain because of the epidural, and I am one of the lucky ones in that anaesthetic doesn’t affect me badly. I was taken to the ward. I couldn’t see much of the wound yet, I had a drain in the top of my thigh which I thought was a weird place until I saw the actual scar…..

 

The next day the nurse changed my dressing and I asked if she would take a photo of my scar on the buttock, I unfortunately won’t be showing my actual flap as is it hidden between my butt cheeks, but you can get the idea that it is a rectangular piece of skin and tissue that is stitched there. When I first saw the photo I was a bit shocked at the scar, it was like a great white shark bite is the only thing that came to mind. Although since then I have other pics that show it looking reasonably neat and tidy, and a district nurse has since said that it actually looks good and some that she had seen looked barbaric, so I guess it’s not too bad after all.

First pic is second day, second pic is about 10 days post surgery.

 

The care was excellent and my surgeon and plastic surgeon came and said they were pleased with the result and were hopeful that this would do the trick with the fistula. I opted to have the epidural removed after only a couple of days because it caused awful itchiness, and my left leg went too numb and they were concerned the epidural had done something. It was all good and the numbness went away ( except at the site of surgery).

I was very surprised how quickly they discharged me, drain came out on day four and that is when they let me go home. I was a bit concerned because the drain site was leaking, and I wasn’t allowed to sit at all for four weeks AND I wasn’t allowed to lie on back OR right side for much the same. This is all well and good but eating was a mess and my left leg was so so achy and painful after a short while. I didn’t get any offer of occupational therapist to see how I would cope with this, and mentally it was dreadful after about 2 days at home.

I have an issue with NHS surgery aftercare, it is more or less none existent as I will explain in my next post. In fact if it wasn’t my surgery and life on the line it would be comical. When you are discharged home even with district nurses ( who can’t tell if surgery is failing or what the fluid coming out of other exits is ( yes this was happening ) then you would think there was a plan to get in touch with someone who does……..