22 - A feeling like no other

"Manoeuvrability with a tube hanging out of your stomach ...  was to say the least, disturbing."

The clinic appointment came around, and it was one I can tell you I was not looking forward to.

Manoeuvrability with a tube hanging out of your stomach, that was directly inserted through your skin and into your colon with a bag attached to the end that has to be pinned to your clothes, was to say the least, disturbing.

You see, the tube and bag were there as a pressure relieving system, almost like a release valve to ensure all that no problems arose from any digestive working. On occasion the bag attached to the tube had to be emptied, the tube also had to be flushed with saline solution ( which I can tell you is not a pleasant internal sensation) in order to be preventative in the interim.

However, the time had come when it served its purpose, having been there whilst the other tears in my bowel had healed. My surgeon had not really implemented this solution a great many times and was both nervous and anxious to remove it, which made me understandably feel somewhat apprehensive. My surgeon though was superb, and has been all throughout my case and so my confidence in him was high.

"..in my own mind I had imagined the end of the tube to have a small one inch piece. How wrong was I?"

My wife and I sat in the clinic waiting room nervously waiting for my name to be called, my own anxiety and adrenaline racing each other through my veins in anticipation of the forthcoming removal. I have been told that the end of the tube that breach my skin was attached to a T section and in my own mind I had imagined the end of the tube to have a small one inch piece. How wrong was I?

My consultant called us through to his treatment room where upon I lay on the bed at the side of the room, a senior treatment nurse busied around the room preparing packing and dressings following its removal. My consultant hovered over me like a cat ready to pounce on its prey, and told me that the stitches holding that you been had fallen out. That explained the various discomfiture I was experiencing since it was installed as it was moving about in my colon.

"My consultant hovered over me like a cat ready to pounce on its prey"

So, to the removal. The nurse stood by in observation, watching with piercing eyes at my stomach while my consultant reached in. As I said earlier, my interpretation of a T tube was a mere inch inside my intestines, but what it actually was in reality shocked me. My consultant took a hold of the tube, and slowly, but surely, he began to pull.

As mentioned in the title of this post, this was the most bizarre sensation I have had open to now. For it was not a mere inch of a tube, but considerably longer. It reminded me of a stage magician pulling out a long length of tied handkerchiefs from his sleeve, a vast length of material that appeared to have no end. My T tube was very much like this in that the surgeon was pulling, kept pulling .... pulled some more and it did not seem to end! If I were to say I didn’t feel like swearing, I would be lying, but, considering the room had ladies present, I managed to invent a few associated words to express my feelings as the tube was pulled out of my colon.

".. it afforded me to be able to return to some semblance of normality"

Finally, I saw the end pop free and it was out. The nurse descended with the dressings and patched up the hole faster than a Dutch boy at a leaking dam. The next planned operation would be to reverse the Ileostomy bag once the hole had healed, and this was planned for the October (2011).

This operation was one I was looking forward to, for it afforded me to be able to return to some semblance of normality. What I wasn’t looking forward to were the xrays to be able to check if my colon had healed with no additional tears that were unforeseen, this involved a somewhat invasive scan with what I can only describe as a “visibly enabled fluid colonic irrigation” CT scan! Not a pleasant xray, and one I will describe in my next post!!

21 - The next procedure cometh

The request came through for the next operation date, and it was a welcomed appointment. The metal in my left elbow, though supportive in that it kept my arm together, was painfully restrictive.

"my entire left side had been crushed and subjected to the most severe forces one could imagine"

Range of motion in my arm was limited for it now could not straighten nor fully bend beyond 90 degrees. You'd be surprised how often your arm needs to bend beyond 90 in normal life; whether that is eating, dressing, or doing simple tasks that everyone takes for granted on a daily basis.

In my situation, during the collision, my entire left side had been crushed and subjected to the most severe forces one could imagine. Both my left leg and left arm are restricted in their range due to their imapct damage so, you can imagine the problems.

Take one day in your life, say do it tomorrow, and make a mental note to log everytime your knee and arm need to bend beyond 90 degrees; from going up and down the stairs, eating breakfast or any meal, kneeling on the floor to access a DVD player or plugging something in where you might lean against a wall. You'll be surprised how many times you'll need to bend your limbs.

Whilst in hospital, I was sent to a nerve specialist who reported that the radial nerve in my left arm had been damaged in the collision so I was hoping that, once this operation was completed, that I might have a bit more movement and the feeling return in my hand.

"My frame of mind was one of desperation"

I was taken in to the Trauma ward with high anticipation. This turned out to be a wasted journey however as there had unfortunately been, the day before, a terrible car accident locally (ironically) and there was little room or time to be able to work me into the schedule. Heading home again that day, I was somewhat deflated. My frame of mind was one of desperation to get moving forward again and this operation was a step in the right direction.

Luckily, a few days later, I received a call to say I was to be added to the operational register for the following week and the metal would be removed then. Once more, I can recall the clinical smells of the anaesthetic room flood over me and the face mask of the 'knock out' gas over my mouth.

" my nerve that had become 'fused' to the plating"

After another long operation I awoke with a cast on my arm. This was to hold my arm in a single position while the skin healed to a point and my movement was restricted to ensure no further damage took place. The report from my consultant was that he had been able to meticulously pick free my nerve that had become 'fused' to the plating during the time it had been placed there. This improved the feeling in my arm and hand considerably. It did not totally cure the numb sensations in all spots on my hand but it helped.

A few weeks later, I was having the cast removed. I can tell you, it is a little un-nerving having a nurse, armed with a pair of industrial scissors, advance on you. It was a relief to have it removed, however, and meeting with the trauma team consultant, I was told that there was still a lateral screw left in my elbow joint which would have been a too traumatic ordeal to remove it.

Still with the tube connected directly to my colon, it was decided that it was time for that to be removed and it was one minor clinic appointment I was not looking forward to.

20 - A long time coming

" .. my legs were still not really strong enough .."

By this time, in February 2011, I had spent 10 months in hospital with a brief 'moment' at home. The regular daily grind of the hospital routine had chipped away at my sanity for many an hour.

My mobility at this stage was moving from a gutter frame to crutches, a strenuous and bold move considering my legs were still not really strong enough to support my weakened frame. Bringing crutches in to the equation was demanding on my balance and strength but, working tirelessly and through determination, I was able to succeed at making a little headway.

My next major goal I set myself was to begin to manage stairs. Again, another action that the totally mobile masses take for granted on a daily basis; going upstairs in their home to a bathroom, the bedroom or study. As the stairwell was still a distance for me from my ward bed, the physios took me by wheelchair, often my wife in tow to observe my progress.

"This triumph drove me on .. "

I guess that, psychologically, the fear of falling was a duanting prospect for me. Having broken the majority of my bones in one singular event, I didn't want to stumble and cause more injuries by careering down the stairs.

To begin with we worked on a single step, using my 'good leg' to step up first and, pulling on the bannister, driving through the other hand on the crutch, I managed it. This triumph drove me on to two steps, then three, four, and then six. Tiring though it was, I was not going to let this beat me.

" ..I had spent 11 months in 2 hospitals (and) 11 different ward environments .."

Having this new ileostomy proved, once more, a factor to be considered into the timings of my physio. I was still unable to care for it myself as the range of movement in my left arm was still restrictive. Pain still racked my limbs and the many different oral pain killers I was taking did little to remove the sensation.

When I was finally discharged from full time NHS care in March 2011, I had spent 11 months in 2 hospitals ranging from the coma in Critical Care, High Dependancy, Liver, Trauma and Colorectal totalling 11 different ward environments. But my time was far from over! I still had a further 5 surgeries planned in the coming months. So far, I had endured 19 operations, all under General Anaesthetic, not counting the minor ones I had in CT and Ultrasound.

Its funny but, the other month, I was attending a clinic in hospital and had decided to visit one of the old wards I had been 'resident' in, catching the lift with a lady and ambulance staff. The lady was somewhat annoyed, explaining to the ambulance crew that she had been in hospital 3 weeks, which made me smile internally to my self. Obviously, the three weeks to this unknown woman was subjective to her, coupled with the reason for her stay, but to me, it didn't seem like a long time at all.

My next operation, the 20th, was the waiting for me in May.

19 - More time at the NHS' pleasure

" .. a vent bag plugged directly into my colon .."

I had awoken with a new ileostomy pouch on my right side, positioned, according to my surgeon, at the end of my small intestine. I did have an added extra; a vent bag plugged directly into my colon through my stomach on my left side. Attached to a pipe that ran directly into my bowel, this was there to prevent any further problems arising from the fistula on my hip. I was told that at some point this would be pulled out, with no anaesthetic, which filled me with angst but I would worry about that later.

The surgeon had also remved my appendix at the same time. Not that there was anything wrong with it, it was just a precautionary measure to limit any future trauma.

My now extended stay, at the NHS' pleasure, seemed more and more to me like a prison sentence than a period of recouperation. Although the bed location changed and the ward room changed, the experience was still familiarly repetitive.

" .. a typical day on the ward .. "

Let me walk you through a typical day on the ward in an average hospital in the UK.

Regardless of the evening before, whether you were successful at getting to sleep prior to midnight or not, you will be woken regardlessly at 6am when the nightshift has to take the first of the days 'obs' ('observations' to you and I), which consist of body temperature taken using the ear probe device and a blood pressure reading using the traditionally velcroed arm band and noisy machine that is wheeled about the ward from patient to patient.

"Bleary eyed and non compus metis .."

Should you be one of those unique individuals that is able to instantaneously drop off to sleep again following a disturbance, then you will be fine at this stage. However, if you are anything like myself, once disturbed I find my mind engine begins to start up and the difficulties of retrieving slumber again elude me until the next phase of the morning routine.

At 7am, the morning shift of nurses arive .... and the lights go on. Not only at the ward nurse station, but the corridors (if there are any) and the ward rooms. Bleary eyed and non compus metis, the ward swings into action with a 7:30am start at the individual patient washing gambit. Those patients again lucky enough to be able to walk are a godsend to the nurses and healthcare assistants; a quick command to march off to the sinks with their washbags is a tick on the list. Those unfortunates who are restricted to their beds are another matter. When it's your turn to be honoured in this daily ritual, a healthcare nurse descends into your bedspace, draws the discretion curtain and brings the bowl of hot water and wad of wipes. If you have shower gel, it will be added to your bowl, frothed, and applied to your naked body following being stripped of your nice green, one-size-fits-all (ed.-like heck it does!), NHS pyjamas.

However, regardless of whether you're unable to move a great deal or not, it is the 'prime directive' to have neat looking wards and so it is of the utmost importance that patients aren't lounging about on their beds, rather, sitting nicely in the somewhat uncomfortable seats next to their cabinets for the day. So, once washed and dressed in a clean set of (not) made to measure pyjamas, you're sat in your chair awaiting breakfast and the tea trolley.

" .. not the most glamourous affair .."

On the ward in those months, you can see the weight loss I suffered

Breakfast in hospital is not the most glamourous affair, very basic and simple. Added to that, it is also regularly the same. On the breakfast menu is:

• Cold toast (its frigid temperature owing to the fact that it is made en-masse prior to the trolley coming into the ward from the small kitchenette. If you're looking for an adequate weapon to throw at people, save this item and use in a modified frisbee action at 10 paces)
• Cornflakes
• Rice Crispies
• Bran flakes
• Ready-brek porridge
• Orange juice in an unbelieveably difficult to open carton which, if navigated unsuccessfully, will decorate the ward floor in front of you in a nice orange swatch

" .. and a phalanx of trainee doctors .."

From the drinks trolley, you have a choice of either tea or coffee and your choice of milk (whole fat, semi, or skimmed).

While you are still consuming your breakfast, the teams of doctors flood the ward. Each primary consultant (that you have been assigned to, and there could be as many as 3 or 4 consultant surgeons on the ward) has a team of associated doctors, secondary surgeons and a phalanx of trainee doctors in tow. Depending on the severity of your individual circumstances, the curtain may or may not be drawn while you are visited.

Your notes consulted from the mobile notes trolley, the team leaves you alone for the day having requested blood tests, x-rays or other specialist actions. Following the doctors rounds, which should conclude at about 10:30am or 11am, the phlebotomist swoops into the ward like a vampire in a white coat. My phlebotomist was great. With the veins I had, she always knew how to tap my veins to obtain blood if it was needed. We used to have many a discussion on all topics.

" ..like a vampire in a white coat."

Your blood having been drained, if you were lucky enough to be on the list, you should now be in receipt of your menus for the following day. These, if you are in a hospital that has outsourced its meal supply to an external contractor, are a sheet of tick boxes for your lunch and dinner. I found this very bizarre. It was difficult enough knowing what to eat on that day, let alone having to choose what you want for the next day. Peoples taste can change hourly; what you fancy to eat one hour might be something completely different the next. The menus used to be arranged in a three week rota. This changed to a two week rota where I was able to begin to predict what meals were offered on what days. This then seemed to be reduced again to a weekly rota so that every Monday the meals were the same, every Tuesday the same, and so on.

It did get to a point where my wife was bringing in rotisserie chickens from the supermarket, soups not available on the menu and we even sent out for evening pizza, chinese and indian on a few occasions.

Digressing from my daily breakdown for the moment, let me touch on the food aspect. It was at this time that a documentary was completed on television about the NHS outsourcing their meal supply to external contracting companies. The hospital that I was residing in had their contractor featured heavily on the programme. Being in charge of the television remote control for the ward, I was in the unique position to ensure all patients in the room saw the show.  Such was the programme, the following day the hospital catering department urgently sent around 'Satisfaction questionnaires' for all patients to fill in. I can say that filling it in was very satisfying. I recanted all my problematic issues with the system; the poor quality, the importance of nutricious meals to aid recovery and previous meal disasters.

"This was, in my view, totally inadequate"

So, to return to the daily diary. After the tea trolley returned for a ward sweep at 11am, the ward physios now cascade through the ward doors and begin their tireless activity of moving the more mobility needy patients. In my case, I was one such person requiring the attendance of these teams. One of my gripes with some of the physio sessions is that, owing to the nature of the circumstances of the NHS, they have to get around so many patients in an allotted amount of time which was 10 minutes per patient. This was, in my view, totally inadequate. With most in this time frame, it was only possible to get the patient to their feet, walked 10 feet in the ward room, turned and walked back to their bed.

Another of my exasperations was one of ability. Some of the physios I encountered were unable to both interpret and understand restrictions from a physical perspective. Rather than analyse how the injuries I had sustained limited my movement in differing ways, they instead expected that I should be conforming to their taught practices and ways of conventional movement. I feel that a team should be able to look at a patients file, note the injuries sustained, and develop more ideal ways of adapting movement to yield the best outcome, rather than just expect that all patients are 'equal'.

If you were lucky to be seen by the physios before lunch, then count your blessings. If not, you'll be scheduled afterward.

Since my original move to this hospital 6 months ago, the way of serving meals changed. Lunch would now arrive at 12:30pm by way of a heated food trolley, rather than reheated in the kitchens. The previous days meals selection tick sheet is referenced and your meal is served.

" .. a woefully inadequate filling .."

Lunch over, physios receeded, there was then some adequate respite before the first of the visiting hours with another return of the tea trolley at 2:30pm. On some occassions, the porters (also sub contracted with the cleaning staff to the same company that handles the meals) would take you to x-ray if required. At 4:30, it was visiting time for an hour, giving you a little time to catch up on events on the outside.

At 6pm it was tea time. Tea usually consisted of a combination of:

• A sandwich (which already on the Use by date on the packet had a woefully inadequate filling and barely any butter. If there were any left over, these sandwiches would be collectively sold to the nurses the following day)
• A salad (consisting of a large proportion of coleslaw, beetroot, lettuce, a cut tomato and an added extra which was either processed turkey, ham, plain tuna or corned beef)
• Soup (tomato, vegetable, chicken, mushroom if you're lucky or a local specialty that left you aching to rub a scouring pad over your taste buds)
• Cheese and crackers (a packet of two Cream Crackers and a small shrink wrapped centimetre square by 4cm rectangle and a pack of butter)

At 6:30pm it was visiting again, until 8pm.

The nurses on the night shift would arrive at 7:30pm and the handover would commence. This was either done by senior nurse to senior nurse or, if time was going to be an issue if staffing levels were low, by a recorded message detailed by patient and bed number.

8pm saw the drinks trolley of coffee, tea, Horlicks or hot chocolate be dispensed. Then the night team would busy themselves with preperations for the nightshift; obs, catheter bag emptying, urnine bottle replenishment and other tasks.

Depending on when you wish to sleep depends on whether the television is switched off in time. Additionally, the noise levels are tried to be kept to a minimum but this is not always possible. Nurses will still have jobs to do, the lights are dropped but not switched off and unforseen problems with patients in the middle of the night still arise.

That concludes the daily grind of a typical ward!

18 - Yet another trip into general anaesthesia

"This was, for me, a big day"

The ambulance came for me early in the morning on the 5th of January. This was, for me, a big day. The ileostomy reversal.

Both my wife and I had been thrown into the life of care with this medical solution to the tear in my bowel and, to be rid of it after almost a year, was a blessing. We imagined restful nights, not having to wake up every two hours, not having to spend many a day weary from the previous night. The thought of that alone was shear bliss.

I was taken into the admission ward and checked in with all the usual checklists and questions, meetings from the anesthetist and the surgeons team. I was first on the operations roster and was taken down to theatre at 8:30am.

" .. placed over your face like a plastic parasite .."

Even now, going to the operating theatre is a bizarre experience for me, even for the amount of operations I have had to date. By my count, I had had 18 operations with the 17th being my knee reconstruction, so I was getting rather used to the procedures involved. When the breathing mask is placed over your face like a plastic parasite, it is then that the time in that side room is short for your waking conciousness. Breathing in the 'air' they give you, you rapidly come to the conclusion (as the feeling starts to go from your limbs) that the descent into arranged sleep will be quick. My only advice I can give to those seeking solace from this blog if they have a pending surgical procedure and are nervous is, simply, don't be. Breathe deeply and you will come out the other side. Faith and trust is key. Belief that you will awaken in the recovery room, the procedure all completed, helps to cope with the experience.

After a few deep, lung filling breaths, the familiar feeling of inky sleep flooded over me.  I slowly awoke, an indeterminable time later, hearing the noise of movement and voices reading paperwork. Forcing my eyes open, I recognised the recovery room and a nurse looking at me with a smile.

I had made it through another operation and I smiled at the nurse that came to collect me to take me to the ward for observation. With this type of reversal, it was common practice to stay in hospital for a few weeks until it was noted that digestion was working correctly.

My stomach after the operation

" .. not even morphine, oral or otherwise, was effective in controlling the pain .."

Staples, as a form of closing incisions, have a tendency to pull somewhat and, on their removal 14 days post surgery, can be a little painful. Even the dressings used were painful to apply with the nerve endings coming alive again. It was during this time that not even morphine, oral or otherwise, was effective in controlling the pain and was decided that Entonox gas (Nitrous oxide and oxygen) would be useful to help me control it better. I can truthfully say that it doesn't make you laugh and doesn't mask the pain much, it just helps to distract you.

One of the most painful experiences I have endured was awaiting for me on this ward, however. My blood samples were showing signs of some infection and the senior nurse practitioner was called to the ward to take a sample of my blood. Not from my usual veins which were now shrinking fast, but arterial blood. There are a few locations to obtain that sample, and a few were tried. My memory of that event still lingers, I can still see her face as she withdrew what looked to me like a knitting needle length syringe. The first location she tried was my wrist, bypassing the surface veins to access the artery below. Unsuccessful, another location was tried; my groin. Nothing prepared me for this.

Anguish was rife, just like the guided CT minor operation I endured in the previous hospital. I was unable to move again, having to just remain motionless whilst the needle was slowly pushed deeper into me to reach the artery. The fight or flight response is meaningless here, being unable to move, and all I could do was sink into myself and grimace through the pain. Unsuccessful again, she tried my wrist once more, this time reaching the artery and drawing off enough to complete the requirements for the test.

"Seeing death is humbling to ones own existence."

Once again, I made many friends during this stay, from the man who watched 24hours a day news to the young lad I gave emotional support to through sharing our experiences. I also saw death in this ward. The poor gentleman opposite, for whom I was unsure of the diagnosis, one night did not make it. I watched helplees as his curtain was drawn and numerous doctors and nurses tirelessly moved back and forth but to no avail. I heard, the next day that, despite being moved to Surgical Support Unit, he did not make it.

Seeing death is humbling to ones own existence. I was very lucky to be alive. So many times I could not have pulled through, so many times it could have been my wife in unconsolable grief looking at an empty bed that she regularly visited. I thought much on this during my stay.

After 4 weeks, I was released back home. This was, unbeknown to us, to be a temporary reprieve. There was still the fistulation from my side to my intestine. While my digestive system was in trying to cope with the sudden reboot following almost a year out of action, there was a tract of escape for feacal matter to come out of my hip abcess. After 10 days my pallor wasonce again turning a lighter shade of grey. The district nurses that attended our home, on a daily basis to dress my surgical wounds, suddenly found a need to call the emergency 'hotline'. The ambulance turned up, the sun had faded low on the horizon, and I was once again taken back in to hospital.

" .. good and bad news .."

My surgeon was called and he met me on the ward with both good and bad news. The bad news was that I was going back under the knife for a replacement ileostomy. The difference being, and this was the good part, it was further around my small intestine giving me more bowel to digest food. I wept once more, having the rug pulled out from under my progress again.

We had become such frequent friends he took me down to the theatre himself, which was the best bedside manner I had seen from any surgeon since my stay thus far. Lets face it, he'd seen parts of me that even I hadn't seen!

At around midnight, I was returned back to the ward. It was becoming more and more difficult for me to put on that 'happy face' but my determination was astronomical. I was driven to the extent that nothing was going to defeat me, I would endure whatever life decided to throw at me and come out on top.

17 - Jingle Bones, rattle all the way

So on the 20th of December, having been able to pull myself from a seated position with help from a physio and being able to just about make a 20 foot assisted walk with the gutter frame, I was temporarily discharged for Christmas!

"..I was unable to walk at all .."

My knee, now containing the large titanium plate and screws holding my knee together, was not able to bend more than 90 degrees and was painful when reaching its maximum range of motion. My arm, still with the plating and cables, was still uncomfortable not being able to rest it adequately on any surface nor bend it beyond 90 degrees as well. The plating, now removed from my shin but still present in my ankle, was causing undue swelling. Owing to the amount of surgery I had experienced to date, I was having daily injections of Deltaparin, which is used primarily to prevent blood clotting in this scenario. My stoma was still needing daily care and I was unable to walk at all without the aid of the gutter frame and even then only 20 feet. Stair climbing was a prohibited act so I was to spend Christmas sleeping on the sofa.

Being handed over to the District Nurses for my care from home, I arrived home at 8pm at night to a tearful reception, not only from myself but my wife waiting at the door. I ask you to picture the situation that has now presented itself, having been married for only 9 months before the collision, my wife was nearly a widdow but, owing to the masses of inner strength unbeknown in my possession, I survived a horrific crash. She was now, having been ad-hoc trained by various departments in the hospital as a helper (the physiotherapists, tissue viability, healthcare assistant, stoma nurse and general nurse), suddenly promoted to my full time carer.

" ..I still wanted to regard my wife as such, not as a nurse .."

Both our knowledge of medical processes, dressings and application, and bodily care had increased 200 percent due to my stay thus far in the hospital environment. Personally though, I drew the line at the Deltaparin injections for my wife to administer to me. I still wanted to regard my wife as such, not as a nurse, so I was very specific in desiring that District Nurses resume the role of injections.

Which brings me to the next NHS failing that I believe exists: the after care. Speaking to a nurse that attended our home one morning, it has now been the 'unwritten' request to hand over as much care of patients in the community to the relatives. This comment was met with much chagrin by ourselves. Quite simply, this short sighted decision to encourage relatives to become more 'actively involved' basically means that there is a clear staffing level issue in the community that cannot be met. Additionally, the extent of my injuries, and the dressings in place to help combat them, confounded some of the experience of the nurses. We felt that a good, active policy, would be to rotate the District Nurses to spend time on the wards with the patients they may eventually care for. That way, they can be kept up to date with modern practices of health care and provide more active solutions in the residential area.

" .. the after care by the NHS is one that needs considerable attention."

In general, from many other patients I have spoken to, ones with traumatic injuries and ones with mental health issues, the after care by the NHS is one that needs considerable attention. To me, it seems that once discharged, the after care is lacking in support; from specialist transportation back to hospital for clinic and appointments, to out-patient physio. The emergency services and Critical Care front end of the NHS is amazing. It is effective, efficient and life saving (I am proof of that). It is only when the long term care begins, from some wards, to the community, is when the issues arise.

I will cover more aspects of this as I talk about when I was discharged.

Back to the tale.

Christmas 2010 was both a physically demanding affair and an emotional rollercoaster rolled into one. Comfy though our sofa was, looking back in hindsight over my desperate need to see homelife over a hospital ward, I don't think I was fully ready to be at home. In order to work into my daily schedule of washing, walking and resting, my wife had to shoulder a great deal of the burden that was once fulfilled by teams of nurses on a shift pattern.

".. can be a blessing in one hand and a nightmare in the other .."

Nights were the worst. Neither of us were able to get much sleep; myself on the sofa downstairs and my wife in our bedroom upstairs. This was primarily because of the ileostomy. It seems to me that those with intestinal problems and have an ileostomy / colostomy to cure them, they can be a blessing in one hand and a nightmare in the other. A blessing as they can give people the freedom to live a semi-normal life, but there's always a concious cloud on the horizon in that your approach to life has to adapt.

The first thoughts on attending any social activity, when having one such colorectal solution, is "Where are the nearest toilets?". Being able to cope with these medical solutions is challenging. With my experience of an ileostomy, it was continually working, throughout the night and day and our adaptions to this resulted in scheduled 2 hourly alarms to wake and ensure it did not need attention.

"Broken sleep leads to broken spirit.."

Broken sleep leads to broken spirit and both my wife and I were constantly tired during this phase. It became a willful necessity to deal with this, when, in a hospital environment, I could reasonably rely on the nurses working a nightshift to assist. If during the night it needed attention, I would use my mobile to send a message up to my wifes phone.

Christmas Day arrived and I opened my parcels on the sofa. Despite the frustrations of my situation, I felt  more mentally strengthened by being in a home environment. We ate a Christmas dinner, even though my food intake was not what it once was, and New Year's Day passed in much the same vein. It was then time for me to be re-admitted for my ileostomy reversal.

Little did we know that it would not all go as planned.

16 - Insanity from lack of minerals strikes!

My knee surgery was immense. 

As you can see from the above 3 dimensional snapshot that formed one of the many CT scans, the condyle of my thigh bone had broken free in the collision. It's splintered shape ran the risk of severing my main leg artery at any time during, after, or since the collision in hospital. This was the first task during surgery.

Second, the resetting of my knee bone (what was left of it) to its correct position was next on the list for the operation. It appears that the patella was shattered to almost nothing and the largest piece that remained had tried to heal itself to the end of my thigh bone. This had be cut free and then repositioned back to its original location.

Then, the placement of a large piece of titanium plating was added to my knee to help keep it all secured in place.

The knee plate viewed from the top, finishing mid thigh

(Looking at the 3D image, you can still clearly see the holes in the bone from the exterior fixator on my thigh that rant to my shin!)

"The operation lasted for hours"

The operation lasted for hours. My wife was getting somewhat aggitated in the waiting room of the ward, hoping all was proceeding well. After a long and agonising wait, I was brought back to the ward from the recovery room. 

My recovery from this operation was the worst. Under orders from the surgeon, I was to have, on my leg day and night, a CPM machine. This is a Continuous Passive Motion machine that bends the leg for you and can be preset to move to increase the speed and finishing angle. 

Image borrowed to highlight the machine used in my case

A similar functioning machine, like the one pictured above, I had to have working even when I slept to avoid my leg becoming static and ceasing to function properly. Or, as the surgeon put it, "I don't want your inability to walk to undo all of my good work!"

".. forced down your nose and into your stomach .."

My body reacted to this operation in another unforeseen way, however. For it was owing to the general anaesthetic and extended period I was under in theatre that shut my digestive system down. My bowels went on strike! 

I couldn't eat, nor drink, without being sick and, to really make my stay in hospital that more enjoyable, I had to have an NG tube. Again, for those not clear on medical practices, an NG (or Nasal Gastric) tube is a tube that is forced down your nose and into your stomach to drain its contents. As a consequence, I was only allowed sips of 60mm of water per hour to keep hydrated. Boy, was I lucky!

Another borrowed image to detail the NG

This went on for several days. I had to have regular blood tests to ensure my chemical balance was achieved but my veins receeded when these tests increased. It would have been easier to get blood from a stone than dip into my veins for a sample. 

Then, after an infection, I was moved to a single room on my own and that's where a chemical imbalance made me go loopier than a circus clown. You see, the body requires a delicate balance of minerals in order to function properly; sodium, potassium, magnesium and a whole host of others. My wife had arrived one day for visiting hours, only to be intercepted by the Sister of the ward who proceeded to tell her, "He's not himself today."

".. completely 'lost the plot'.."

Further investigation from her proved the Sister's comments to be right. I had completely 'lost the plot'. From my delusional perspective, I had died. For some reason, I had formulated some waking dream that I was needing to get to the next world by way of interstellar travel. I remember only two hours or so from those two days that  I was mentally impaired. They had assesed what the cause was: potassium deficiency. Such an innoccuous mineral could cause such a mental imbalance. 

I was quickly put on a potassium rich intravenous drip and by the morning on the third day, I waved at the Sister as she came in to the ward. An action, I can assure you, relieved her to the utmost. 

Me in the private room after my mental episode

By this time it December and it was rapidly approaching Christmas. I was determined to spend it at home and be temporarily discharged to have some time in my own environment. Working with the physios again, I had an arm gutter frame to support my weight and I had begun to stagger short distances. 

It was planned that I be discharged on the 20th of December and return for my ileostomy reversal on the 5th of January. Christmas was even more of a challenge than we dared to guess!

15 - The A to Z of wards

"..  moved wards once more.."

I was moved wards once more after the transfer between surgeons. By this time I was seriously gathering material for an A to Z reference book on both hospitals, wards and service! Having seen 6 wards and 2 hospitals already in my stay, from Critical Care, HDU, Trauma and Colorectal wards, I was meeting many people, nurses, doctors, surgeons, students and patients.

It seemed my case was something of a medical student requirement. My surgeons were refering ward students to sit with me and learn the severity of my injuries from a patient point of view. Oddly, I found great solace in retelling my story thus far to students. They would sit with me for great lengths of time, scribbling their notes and comprehending the emotional trauma I had experienced.

".. visible dye needed to be pushed into my bowel.."

The time came for me to be taken to theatres for the surgeon to remove my stomach abcesses. Prior to this, I was taken to x-ray for a detailed analysis. They needed to see exactly what they were dealing with and, to do this, visible dye needed to be pushed into my bowel and into the abcess pockets. My ilieostomy pouch was removed and a tube was inserted into it, pumping the dye through while the scan took place.

All the time I was thinking, imagining, what the driver of the other vehicle was feeling. He was lucky enough that his irresponsible driving behaviour did not injure him in any way and, within days of the collision many months before, he was probably back at work and earning his wage.

The scan completed, my operation took place. The effects of the general anaesthetic wore off and I was taken back to the ward. The hip abcesses, my surgeon advised, were too difficult to deal with at this stage, for the fistulation track apparently was intertwined over my hip bone and not easily resolved. That had to be left for the time being.

".. keeping the nurses on their toes.."

It was now a month wait until my knee was rebuilt by my Trauma and Orthopaedic consultant. During those waiting days, my sense of humour kept me sane. The ward had residing there, a rather scatty brained individual who was famed for his antics in keeping the nurses on their toes. I heard stories that, during the night, he had gotten into bed with other patients claiming they were in his bed, taken some of their possessions with a similar excuse, and found in the bathroom with his face covered in shaving cream while running his finger down his face in a shaving action. His absent mindedness was a breath of fresh air! On many occasions he walked an invisible dog around the ward and could be heard talking to it, not to leave out when he didn't want to be there anymore and simply walked out the doors. I remember one day, one of the healthcare assistants had to run down the main road outside the hospital entrance to catch him before he reached the next town!

He and I got on well, in that I was his visual reminder he had another two rooms to walk around the ward before he reached his own bed. I would be watching a DVD on a portable player when he would poke his head around the door, look at me and say, "Still another room to go!"

".. the comode, and the aroma of ... well, you get the idea"

Breakfast in a colorectal ward was an interesting challenge to. By the very nature of the ward, people had bowel issues and, those with mobility issues, had to use the comode to service a vital function. One big drawback with this was that those bodily necessities occured at mealtimes and, one such memory of mine was trying to eat breakfast, the next door bed curtain drawn around the seated patient on the comode, and the aroma of ... well, you get the idea .... drifting through the curtain while I am trying to eat but 2 feet away.

Thankfully, smells aside, my time had come to be moved to the Elective Surgery ward for my knee reconstruction. It was now November 2010, some 7 months after the collision. 

14 - Scrunch your fingers, make a 'fistula'

"..we all were determined to try to get me to my feet."

Again, I had the pleasure to meet a fantastic team of physiotherapists. These guys and gals really made improvements to my less than adequate mobility. Despite my injuries that plagued me, still including at this stage a broken leg, we all were determined to try to get me to my feet. Interspersed with being deposited into my wheelchair for the occasional trip outside to the car park to see the trees, where my leg had to be tied to the chair to stop it from dropping and causing more damage, a mechanical standing machine was utilised to help me to stand.

The trick, at this stage, was raising my bed toward the vertical as far as possible for brief periods prior to their arrival at my bedside to ensure my equilibrium was balanced. These periods, by my own determination, were ever extended to help.

The machine that helped me to my feet

".. weak with all the muscle wastage from inactivity.."

These sessions were very physically demanding for me. I couldn't put weight at all through my left leg because my knee was stll smashed, my right leg was so weak with all the muscle wastage from inactivity, which meant that I was solely dependant on pushing my weight through my arms. That would be fine if one of my elbows didn't have metal cables running across the joint (see below x-ray) which made it vastly uncomfortable to lean any weight on it whatsoever.

My progress with this was always going to be limited with a broken knee but it was rapidly brought to a halt when the domino effect that was started in the previous hospital took hold and that delicate house of cards that was my health suddenly had an earthquake.

If you recall my previous post that described the physical pain endured with the two CT (computerised tomography) and ultrasound guided drainage attempts on the internal abcesses. Access to the infected pockets was through my side and over my internal organs. My body's reactions to this trauma were to create a further multiple abcess cluster on my hip. The additional twist to this event was that the two clusters (in my stomach and on my hip) had joined themselves through a term known in the medical profession as 'collar studding'. Basically, this means that the two clusters had a tracked connection between them.

".. it can cripple mobility.."

Not only that, the hip cluster had another medical assocaiated term that was to be a major hinderence for me, a colonic 'fistula'. A definition of this term for the non medical readers out there is a connection to my large intestine. I strongly believe that this was the result of those initial attempts to drain the pockets. Anyone who has suffered an abcess will know how it can cripple mobility on their own. So for me to have two clusters in different areas of my mid section, an area vital for any sort of movement, my deliberate tries and attempts to get myself mobile from my consistently prone position.

This was not taken too well by the ward manager, who believed I should have been progressing far faster than I actually was. This over-estimation and obvious pidgeon holing I was refering to, led to a heated arguement between her and myself. She was clearly arrogant in her assessment and, because I was not making progress that fitted in with her guidelines, it must have seemed like a failing on her part to which she would have been held accountable, so she 'lashed out' at the only one who did not need that kind of stress.

These abcesses and fistula would need to be addressed in further, additional and unplanned, operations before I could progress further. I met with my colorectal surgeon, an excellent and knowledgeable individual, who agreed to transfer me to his own ward to sort them out. Before that could take place, the metal in my right leg needed to be removed as it was reacting with my skin. So, in my 17th operation, I was taken down for surgery.