Terry's Story - Part 3

Just as you get ‘soaps’ on the television with continuing sagas, here’s my continuing story!

Why can’t I keep my big mouth shut (see Terry 3)? I’m being treated by different district nurse teams from my area, but not the team which is actually the one supposed to care for me due to the problems they caused. The nurses from the other teams have been superb, though. One of the nurses who had just started on her team’s turn to treat me did the digital examination prior to inserting the washout catheter and commented, “Gosh! Haven’t you tightened up!” The answer to that was that I was aware that I was tightening up as the finger dilation before the catheter was inserted (my rectum is at a strange angle compared with a ‘normal’ person following removal of most of my colon [all but the last 6”] and my bladder) is becoming increasingly uncomfortable and now best described as ‘painful’. The nurse suggested that I speak to my consultant.

I was due at the hospital for my annual sleep apnoea check-up and service of my CPAP machine {Constant positive airway pressure - a mask fits over my nose and an air pump blows air at constant pressure down my nose to keep my airway open}. This was the same day that my colo-rectal surgeon held his clinic, so I went there to speak with his clinical nurse practitioner, Chris Marshall - a lovely lady. I told her what the problem was, requesting that she told Mr Bourke, my consultant (a delightful man and an excellent surgeon) with a view that I would be sent an appointment to see him. She insisted that I saw him immediately and fitted me in to his already busy clinic. He decided to fit me in for an EUA (examination under anaesthetic) as soon as possible. Two weeks later I was admitted for this.

It was a catalogue of excellent practice and disasters. I was supposed to be admitted at 11 o’clock, but got a call from the ward to come at 10 o’clock instead. My bed wasn’t ready until 2.30 pm so I had to sit in the ward’s patient lounge twiddle my thumbs for four and a half hours. The anaesthetist came to see me to discuss anaesthetics. I’m a grade 4 difficult intubation (blooming awkward - as awkward as it’s possible to be. A Grade 1 intubation [normal] is where one’s vocal cords can be seen using a laryngoscope [that curved blade with a torch on the end] - grade 4 is where they can’t even see the tip of one’s epiglottis!)

We agreed that I would be ‘breathed down’ on sevoflurane as my peripheral veins are almost impossible to cannulate (put a Venflon™ in the vein). Sevoflurane is a very pleasant gas to breath - not like some of the older anaesthetics - and is the method used for children and awkward people like me whom they can’t put to sleep by injection. He also agreed to give me a caudal block - an injection of local anaesthetic into the base of my spine to numb me from the waist down.

I was taken down to the theatre waiting area and he came to see me to ask if I would like to have a local anaesthetic instead as it would be simpler and safer. I thanked him politely and declined, giving my reasons. These are that I have only had one spinal anaesthetic which, for me anyway, was agony to have inserted. It took a very long time to take effect so that the operation (TURP) had started before the anaesthetic took full effect and I have had problems with epidurals not working properly in the past. I did say that I might have no problem if he administered it (it pays to be nice to these people!) but I really didn’t want to take the risk. He agreed with me that he would feel the same too and said that I could have the general anaesthetic.

Whilst I was anaesthetised, he inserted a laryngeal mask airway (LMA) and had a look down it with a fibre optic scope to find that he could intubate me by inserting a LMA and then railroading an endotracheal tube through my vocal cords over the top of a fibre scope. He told me this afterwards and put it in writing for me, bless him! I had been ‘threatened’ with awake fibre optic intubation in future if I needed paralysing and his method sounds much better on the basis I’d be asleep at the time!

Post-operatively, I was ‘abandoned’ by the ward staff in recovery. My recovery nurse kept ringing the ward to ask them to fetch me, but, despite saying that a nurse would be down in a few minutes, an hour and a half later, when recovery had quietened down somewhat, my recovery nurse herself took me back to the ward - not part of her job. As the anaesthetist had not ordered i.v. fluids, I was dehydrated by the time this was all happening and the nurse kindly went on a cup hunt and plied me with drinks. At one point she had two patients to look after as I hadn’t been taken back to the ward.

Back on the ward, things weren’t any better. As I’d missed the evening meal, I gave one of the nurses a written list of items for a ward snack box which can be ordered when a patient has missed a meal. Half an hour later, a student nurse came to ask what I wanted in my snack box! When I said that I’d already given a nurse a written list, she told me that the nurse had thrown it away without ordering the box for me!

Worse was to come. I’d had a caudal block inserted by the anaesthetist after he’d ‘breathed me down’ and put the airway in. This numbs all feeling below the waist and was given so that I wouldn’t need opiate analgesia on my return from theatre. What you don’t do with a caudal block is get out of bed and walk for two reasons. Firstly, you can’t feel your feet at all, or your legs for that matter, and this makes walking dangerous. Secondly, your blood pressure falls to your feet - literally - when you stand as the blood vessels in the legs dilate with the caudal block. I asked at 9 o’clock for my ileostomy pouch to be emptied as it was nearly full, partly with gas from the anaesthetic. I asked again at 10 o’clock, but was told I’d have to wait as it was drug round. At 10.30, by now very, very full, I asked again and was told by the nurse in a very unpleasant manner, “You empty it yourself at home. Get out of bed and do it yourself!” When I asked her if she would take responsibility for my injuries when I collapsed with the caudal block, she said that she would come back to do it later. My response was, “Fine. When you come back, bring clean bedding, a clean gown, a wash bowl and a towel. By then, my pouch will have burst or leaked, so you’ll need to wash both me and the bed.” She was not amused, but came back immediately with an auxiliary nurse to empty my pouch. She emptied it and then just wiped the outside of the tail of the pouch, leaving the inside where it would be bent over the clip in a very messy state. I had to explain how to do the job properly to her. What makes that worse was she thought she was showing an auxiliary nurse how to do it!

I thought that this was very poor from a ward which is staffed to deal with many patients in theatre (day case and overnight stay) and also has a colo-rectal speciality! We can sometimes get a very poor deal from nurses whose training should have included stoma care. She made it very plain that she thought I was a nuisance, both with my ileostomy and my urostomy as the drainage bag had to emptied as well.

All was well in December and the early part of January, but it wasn’t to last! Just after the middle of January, the digital dilation was very painful, followed by the district nurse saying, “Gosh, you’ve tightened up again!” Other nurses who came on other occasions made the same diagnosis. I discussed this with Steph, my super stoma nurse, who suggested that the nurses could use a dilator to keep my sphincter muscle dilated and to prevent the need for more surgical stretches. I discussed this with my surgeon in the outpatient clinic and he agreed that it was an excellent idea but he wanted me back in to dilate me again under anaesthetic as he said that it would be too painful to just start using a dilator if I’d tightened up again. Unfortunately, this meant a return to the ward where I’d had so many problems before.

In the meantime, life can still come up with the occasional surprise. Before my ileostomy surgery in March 2000, I’d been admitted five times with intestinal obstruction caused by adhesions from abdominal surgery and peritonitis. I’d been free of that problem since the surgery and my urostomy surgery in December 2001 hadn’t caused me to have any repeats. Unfortunately on Tuesday 7 March 2003, I started to feel bloated and nauseous after tea. My upper abdomen started to swell rapidly so that I couldn’t see my feet if I stood up straight and looked down. My ileostomy had stopped working, but didn’t appear to be the cause of the problem as my stoma was soft; when I did have a blockage on one occasion in the stoma area, my stoma swelled and became hard. My urostomy had likewise almost stopped producing any output. During the course of the evening, the pain became worse and worse until my wife drove me to the hospital, arriving at A&E at 1.30 a.m. After checking in at the reception desk, the receptionist grabbed a trolley and insisted that I laid on it on the basis that she thought that I looked ready to collapse - she was probably right! She wheeled me straight in to be seen and very quickly a nurse had seen me, got the details, and called the doctor over. In the meantime, I solved the swollen abdomen problem by filling four grey cardboard vomit bowls as well as spraying the blankets, my gown and the curtains around me.

The doctor came, put an i.v. line in, ordered up an injection of pethidine i.m and X-rays. The pethidine soon kicked in, to my blessed relief. The X-rays confirmed I was very obstructed but, whilst waiting for the surgeon to review me, my ileostomy started working overtime, filling twice in twenty minutes and my urostomy started slowly to produce some output. When the surgeon came, I was feeling much better and declined his offer of a bed in the hospital, preferring, now the obstruction had gone, to sleep at home. I did have to promise, however, that I’d be straight back if problems arose again.

The downside of this is that it’s rather dented my confidence. I lost some small intestine to make my ileal conduit and some more which had to be cut out because of adhesions. I really don’t want to have a fifth major abdominal operation to un-kink a section of small intestine or worse, have to remove some because the twisting has killed it. I don’t have short bowel syndrome and I don’t want it, thank you!

I went back into hospital on 18 March, three years to the day after my emergency surgery for my ileostomy when I had a subtotal colectomy, which left me with the rectal stump. To my great delight, I was put on E12 as there was no room for me on F22, the ward where I’d had the problems in November. Some of the staff remembered me from June 1999 when I’d been there for my reversal of Hartmann’s (removal of temporary colostomy) and they were every bit as good as they had been before. When I asked a nurse to empty my pouch, she did so virtually immediately, without protest. Indeed, far from it, as she said I wasn't to get out of bed until she gave me permission to try and there'd be another nurse present in case I feel if my legs weren't fully back to normal after my caudal block. She also said that I only had to ask if my pouch needed emptying - it was no trouble and it was her job! What a difference! I was very, very glad to be on that ward, believe me!

I was expecting to be in theatre for 5 to 6 minutes, but was surprised to read in my operation chart that I’d been there for 21 minutes. My consultant came up later to explain. There had been three problems as the dilatation had been simple. Whilst I was there, well anaesthetised in the most ungainly lithotomy position (legs out on poles like is done sometimes for childbirth), Mr Bourke decided to have a good look inside my stump. He discovered three soluble sutures which most certainly hadn’t dissolved. These had been used to sew up my rectal stump three years earlier and were working their way through the tissue of my rectal wall. Secondly, despite having had a saline washout the day before, my stump had a great deal of bloody mucus in it which had to be suctioned away. Thirdly, the lining of my stump was more swollen and much redder than he’d ever seen it before, so he took two biopsies. I am awaiting the pathology results.

The next day, Zoë, came to do my first dilatation on the ward. It is much easier in hospital as she pumped the bed, with me on it, to a convenient height so she didn’t have to bend over. Contrast that with the district nurses kneeling beside my bed on a foam pad (aren’t I kind?) to carry out the procedure. The next morning (Thursday) one of the nurses was kneeling, holding the dilator in place with a finger, and commented that she felt sorry for my having to have such an embarrassing procedure done to me and that she would hate having to have that done!

I have seen another consultant to ask about removal of my rectal stump. He obtained all of my medical records and decided that there was no way he wanted to operate on me! Basically The risk is now too great because of the problems I’ve had with adhesions in the past, the fact that, should something go wrong, there is nowhere to resite a stoma as my two stomas are in the only possible positions, and, prophetically, he said that removal of more small intestine if it was so adhered that he had no other option could leave me with short bowel syndrome. He’s tried me on Colifoam and this has helped, but the build up of residue of the Colifoam in my stump is uncomfortable after a couple of weeks as I can’t expel it. It does, however, free me from the problems of having the district nurses twice a week.

I went on holiday with my wife and 27 year old disabled daughter to stay in Harmer Hill, Shropshire near Shrewsbury - a lovely part of the world. On Monday 19 May, we had been shopping in Shrewsbury, stopping in Marks and Spencers Department Store late afternoon for refreshment in the cafe there. I used the disabled toilet and noticed that the output from my urostomy had become very thick and unpleasant - characteristic of a urinary tract infection. I mentioned this to my wife who agreed that I should go the next morning to see the GP in Clive, the nearest GP to where we were staying. Unfortunately on our way back to Harmer Hill, I developed severe renal colic pains. My wife decided that I should be seen that day and, after leaving our daughter at Harmer Hill, she drove me to Royal Shrewsbury Hospital A&E department, arriving at about 19.00 hrs.

I gave the A&E doctor a detailed medical history which he took away with him to telephone the urologists. The response basically was that I have a complex medical history and the urologists didn’t want to know! I was advised to return home to seek medical help at home. suspect that I would have been treated very differently if I had been a ‘local’. The A&E doctor gave me trimethoprim antibiotic, the strongest which the A&E department had, even though I protested that, in view of previous infections, it would be ineffective. My urine had been tested and come out ‘top score’ for blood, protein and leukocytes - a sure sign of a bad urinary tract infection.

My wife had to drive me home in my car the next day whilst I was running a temperature of 40C and suffering from alternatively rigor and profuse sweating. I saw my own GP the next day (the Wednesday) who gave me ciprofloxacin which had proved effective before I had my urostomy surgery. When she later came back to Shrewsbury by train to collect our daughter and her car to drive her back to Nottingham (she has a Motability car, but is unable to drive it more than short distances herself), my temperature rose to 40.8C, so I rang the emergency doctor who decided that I should be admitted to hospital immediately. At that point my wife arrived home from Shrewsbury and was able to drive me, exhausted though she was (she suffers from severe rheumatoid and osteo-arthritis) straight to Nottingham City Hospital where I spent five nights on i.v antibiotics to deal with the infection which had become much worse due to the lack of sensible treatment from RSH.

A few days later, I saw my colo-rectal surgeon for a routine visit and told him what had happened. He expressed no surprise as he felt that I’d got short bowel syndrome. He kindly wrote me a letter for future visits to hospitals with infection.

He wrote: “This man has an ileostomy in place. He also has an ileal (urinary) conduit and has had removal of some of the ileum. Thus, he is "short" of small intestine compared to others and his absorptive area is reduced. With a recent urinary infection, use of oral antibiotics was ineffective and therapy was only effective by the intravenous route. If further infections occur it may be appropriate to use the intravenous rather than the oral route for antibiotic therapy at the beginning.” At least I’ll know next time! !

Terry

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