"Refused surgery"

After CT scans and subsequent investigations, I was informed that I had another incisional hernia, and an intestinal, cutaneous  fistula - where bowel contents and stomach acid spill from a small hole/wound, that refuses to  close over.  I was tasked with reducing weight to 80kg. So, I worked hard and managed to get to 82kg (from about 87-89kg) for a Botox pre-surgical procedure, two weeks before the main major surgery. 

However, I was totally humiliated when the doctor cancelled it, because I was two pounds shy of the weight goal – less than a bag of sugar! This was after I was admitted to the ward and prepared for the day-surgery Botox procedure, wearing theatre gown and socks etc. I was in such a state that the day surgery nurses were worried about me, and my state of mind. Surely Dr X's secretary could have called me the day before the Botox day surgery procedure, to inquire about my weight-loss. That would have saved me a lot of unnecessary heartache and embarrassment.

I was actually close to feeling suicidal that day, but just wanted to go home in a taxi asap, instead of waiting for my patient transport. Those nurses were so caring, as I was in tears and shaking, following the surgeon, the doctor's horrible rebuttal. I cannot fault those true angels that day. They are a credit to Wishaw and the NHS. Thank you, day surgery ward nurses, from the bottom of my heart. 

After that distressing experience, I chose not to see the same surgeon ever again. My doctor put me on a weeks Valium, and told me that I was entitled to a second opinion in Monklands, or Glasgow, but I never got any such thing. I was only referred to the stoma clinic in Wishaw, saying I refused surgery. I never did. The doctor cancelled the surgery because I was two pounds over the required weight. I only refused to see that same doctor again! I did not refuse the actual operation itself.

After some misunderstandings, missing letters, and appointment mix-ups, due to my mother's dementia, who I care for at home, I got a telephone call. Following the call,  I finally attended the stoma clinic in ward 18, where I saw a stoma nurse. Unfortunately that too, was a dreadful experience. 

I don't have a stoma - I have a fistula. The small exit wound is situated in a very awkward place, which is not even remotely like a stoma (I've had a temporary stoma before, so I know what that is). I was informed apart from stoma bags, which I know from my personal experience are no use, there is nothing else. I have tried different types of stoma bags, wafers, paste, doughnuts - you name it, I've tried it, to no avail.  There is no actual fistula team or support whatsoever, at least in Wishaw. The nurse told me dryly, that there are no fistula appliances such as foam, fistula crown, negative pressure appliances etc.

While attending the stoma clinic, I got onto the examining table, when asked, then the nurse firmly pressed a useless stoma bag over fistula outage hole, and seemed annoyed when that caused me great pain. They said it had to be pressed firmly, or it would not stick, and continued, as I winced at the burning pain. The nurse told me my pain was not their area, they were only a stoma nurse. Eventually I told them to stop, because the pain was excruciating, and stoma bags were of no use to me anyway, due to where the small exit wound is positioned. That did not go down too well. 

Believe me, I have tried various types of stoma-bags in the hope there would be just one that would suit my needs. None of them did. I discovered a couple of days later my pain seemed to be caused by an abscess or something of that ilk, in the fistula canal, and could have killed me. Whatever it was, burst and pus and blood poured from the wound for 3 whole days afterwards. However, the relief was short-lived, as the pain seems to be gradually escalating again.

After I attended the stoma clinic, I got a letter from the same stoma nurse, in the post saying that they spoke to me on the phone, where the appointment had been made for me, but I did not attend, so they never made any more appointments! This is untrue. I could not believe what I was reading! My mother was with me that day, so I even have a witness! The system is extremely flawed if a member of the nursing staff can get away with telling such falsehoods. I have kept the letter as proof of the incorrect information about my non-attendance. I feel that was, and still is, unforgivable!

To sum up, I have been left with a potentially deadly intestinal, cutaneous fistula, as I was not referred to another surgeon in Monklands or Glasgow. Out of sheer desperation, I even looked into going private, but I don't have that kind of money. Even the Royal College of Surgeons say that denying patients surgery based on weight is not acceptable, as they can be left in excruciating pain. no surgeon should be permitted to play God with patient's lives. Patients should be made aware of the consequences of any type of surgery, even death, but ultimately it should be their decision if they want to proceed or not, if there's a chance of them having a better quality of life.  Mine cannot get any worse.

I do not drink alcohol, take drugs, or smoke. I have healthy heart and lungs, and have never in my life had any problems with a general anaesthetic. However, with past weight-loss, I have been left with some heavy, uncomfortable excess skin, and no amount of dieting is going to get rid of that – which is very debilitating, on top of having the fistula, that has left me with no quality of life whatsoever, at risk of abscesses, and potentially fatal sepsis. The next time, I may not be so lucky.  That scares me more than any kind of surgery.