“There is no reason for your wound not to heal or keep getting infections. You must know something more about it that you are not telling us…..we will not offer you any further intervention with your wound”
These were the words I heard from a Dr in April last year on the 21st to be precise. I was being told the wound I had in my abdomen should not be a problem, should be healing and he believed the reason it was not healing is because I must be doing something to negatively effect the wound.
A brief history from January 2022 to April 2022. In January a hole in my umbilical appeared with a tunnel leading deeper into my abdomen. It was a urachal cyst that was infected as well as infection in the surrounding tissue, anti biotics didnt clear it so I had an operation which was partially closed to allow any residual infection to clear, this didnt, so I needed another more extensive operation where all the infected tissue was removed but this meant the wound could not be closed and it had to heal itself from bottom up. I was having regular dressing changes by the district nurses every day or alternate day but was still getting infections so was again admitted to hospital in April ’22. There was an initial plan to operate, clean the wound out then refer on to the complex wound clinic lead by plastic surgeons. A different surgeon got involved and it all went downhill from there. I ended up walking out the hospital and went home because I was so scared by the treatment or lack of treatment I was getting in the hospital. On top of what the Dr said to me, I was left with a dressing on my abdomen that I was allergic too and was not being allowed to have it changed even though my clothes were wet from the wound leaking, the nurses wouldn’t help me, I had a lot of pain that was not controlled but I had painkillers at home that were short acting so in my eyes to be safe I had to be home. I have never walked out of a hospital before but it was all I could do.
Anyway I am now a year on from that fateful day and I am reminded of the Drs actions on a daily basis because I still have the abdominal wound and it is still not healing. It has also effected my attitude to all healthcare now. I am constantly second guessing myself and manage to convince myself that all medical people I come into contact with will be thinking the same as that Dr and that I am doing this all to myself on purpose. The stress of this has been overwhelming especially as I have a lot of regular contact with health professionals. I have to talk myself up every alternate day to go and get my wound cleaned, packed and redressed. I get jumpy and anxious at the thought.
Never did I think that April ’22 would have such devastating consequences to me. It meant I went for over 6 months with no input for my wound except for the nurses who were dealing with it. I could not bring myself to challenge the Dr from April as I didnt have the mental strength.
It was only after it cost me so much when a really close friend died. I was meant to go out to Austria and see her after a meeting I was meant to be at in Berlin but I had to cancel this as I was not well enough to travel. My friend then died and I could not go other funeral either. This broke me. It was after this that I finally got the confidence to go to my Dr and ask them to try and get someone to look at my wound to see what could be done.
I now have the input I need but I still wonder if there has been lasting effects on my wound from not having proper care for so long. In 2022 I had over 25 courses of oral anti biotics. I am still terrified of this wound and if it will ever heal. I keep being told to be patient but there is only so much patience you can have when this has been going on for over 16 months now.
I recently had to reapply for my adult disability payment (formerly PIP in Scotland) and it was while I was doing these forms that I realised just how much my wound impacts my life apart from the infections and wound care that is needed.
This is just some of the ways my wound impacts me on a daily basis
- Wearing trousers- the wound is right on my belt line so wearing trousers is very uncomfy and sore so I spend most of my time in PJ’s or tracksuit bottoms. When I need to wear trousers I need to take extra painkillers.
- The tops I wear need to be looser otherwise I am really self conscious about the dressing showing if a top is tighter making it really visible, I also need to watch the colour of tops as the dressing I have are pink and can be seen through light coloured clothes
- Coughing and sneezing. This is something I cannot avoid due to living with severe asthma but coughing really hurts the wound, I can feel the packing in my wound almost rub as I cough.
- Sitting upright is sore so I slouch a lot- not great for my back or posture but it is the only way that is comfy.
- I need to be careful with wearing my seatbelt as the lap part of the strap goes right along my wound line so I need to fold my jumper up in put a hat or scarf under the belt to provide a bit of extra cushioning.
- I cant be very active as twisting and bending over send shooting pains through my stomach, this makes putting shoes and socks on really hard, I often grimace as I do it due to the pain it causes.
- Even things like eating can impact it because if I eat anything that can make me bloated causes pain due to the bloating.
- My ability to interact with people and go about normal living. I feel like I have constant brain fog due to a mixture of painkillers and lack of sleep (due to my asthma but also pain). This has lead me to be on calls I do with academics in asthma a research and I am never able to find the right words I need and it has been commented that sometimes I don’t quite make sense with what I say.
- I also need to be careful when I wash. I cant have showers as and when I want or have baths. The dressings cant get too wet which is difficult when they are on your stomach, if it was an arm or leg it might be easier to put that limb in a bag to keep the dressing dry but you cant with the abdomen.
You can see from that list that my wound is always present and keeps me aware of it. I can never forget about it.
I don’t know if I will ever be able to get over the events from last April. I desperately want to but while I still have the wound that still needs nurse input I will not be able to run away from it and pretend it is not there. I know that had the events in April not taken place I may very well still be dealing with this wound but I would not have gone so long without medical input and guidance into how the wound needs to be looked after.
I would like to be able to sit down with that Dr one day maybe and tell him exactly how much how actions have effected me. I am sure he doesn’t even remember me or what happened. He was so arrogant he probably didnt even think what he did was wrong. I also want to challenge him and ask him what evidence he had for him to justify his actions and what proof did he have that led him to tell me that I am making my wound worse. Whatever his evidence was there should have been action on his part and not say that I would not be offered any further intervention. If he felt that I was making the wound worse myself then he should have referred me on to psychological services, I should not have been left with no follow up either way, but he just left me. I also want to educate him on how to speak to patients but also listen to what patients are saying. He would constantly interrupt what I was saying. I was trying to explain to him that I have been on immunotherapy and oral corticosteroids for 18 years and this makes me immunocompromised and have impaired wound healing and prone to infection. I am sure there are other patients out there who have suffered at his hand and I hate that.
One day this will all be a distant memory with only the scars (that will hopefully form) on my stomach serving as a reminder of what I had been through. I will get back to the happy person who can work in partnership with health professionals who are part of my care. I want to move on from where I am now, even respiratory clinic is impacted and I find when it comes to the appt I cant actually say how I am feeling and how I am finding life. I just say I am fine and don’t open myself up to avoid having another experience like I had in April.
I will find myself again and be me again.