John West’s "semi-private" Webpage to
help similar sufferers — Updated 14 May 2007 by Tamsyn West
In loving memory of John McCallum West
14th May 2006
Aged 55
The following is a story of my
father’s journey which unfortunately came to a sudden and shocking end on
Sunday 14th May 2006.
The family and I think that my Dad
would have wanted us to keep this website active so that others can continue to
benefit from his experiences and obstacles overcome throughout his journey with
Ulcerative Colitis and Colorectal Cancer.
We also feel that it is important to
warn others of the seriousness and symptoms of Septicaemia which my Dad
contracted and later died from on the 14th May 2006.
I hope my Dad’s story continues to
give hope.
Tamsyn West (John’s daughter).
MY EXPERIENCE OF ULCERATIVE COLITIS FROM START TO RECOVERY plus HINTS AND TIPS ON MANAGING AN ILEOSTOMY (and beating colorectal cancer)
WARNING — readers may take offence at the gruesome nature of
some of the text and pictures
(though it is for personal medical reasons only)
the password to the pictures can be obtained by emailing hjwest@ntlworld.com or
tamsyn.west@hotmail.co.uk
Click on the picture to see my personal details
Introduction
I want my story to give hope to those who are contemplating stoma surgery. As you read, it might seem sad, but I want to emphasise how important it is to manage your own health and to believe that there is a solution. Who would have believed that removing my colon would be such a godsend — despite the stoma.
My experience is provided for information purposes only and should not be considered medical advice. Always check with your personal physician when you have a question about your health.
Apart from my wife and children I have not shared my experience and I thought that there are many who would like some first-hand knowledge. My objective is to expose this taboo subject and give Ulcerative Colitis (UC) sufferers some objective evidence on which to plan their future. Unless the doctor/consultant/stoma nurse has had a stoma himself or herself they don’t really know what it is like. But I have the highest regard for the medical profession and I owe them my life. I thoroughly recommend a stoma if life has got as bad as mine had. It is hard to decide to go ahead with the surgery before your suffering has got intolerable. All I would say is, do not leave it too late. I almost did because I tried to fight it too long. If you cannot conceal the problem from friends then I think it is probably time for surgery. Like any major surgery though you have to accept that there is a small risk of death. You must satisfy yourself that this risk is worth taking. In my opinion the doctors will let you go on as long as you don't complain too much. And just to reemphasise the point, I elected to undergo even more invasive and risky surgery 10 years later (in 2005) to remove the residual rectum and anus as they showed precancerous cell development. And I should never have waited so long because a tumour was discovered in the rectum removed (see an ongoing log at the end of this page for my thoughts and progress on the journey with cancer).
Before World War II, people who had Ulcerative Colitis (UC) badly enough died, probably of peritonitis when their colon perforated, causing the bowel to spill into the abdominal cavity. Surgeons refused to operate because the exteriorised bowel became inflamed, contracted and eventually obstructed. The problems were inadequate surgical technique in joining the ileum to the stomach wall and primitive appliances failing to adequately seal the collecting device to the body. Collecting devices were useless and most people were allowed to perforate. The few who were operated on lived solitary lives (because of the odour) while many died, unable to cope with the complications in the area of the stoma. After the war, a new surgical technique was developed by Professor Bryan Brookes MD MChir FRCS Hon FRACS — an everted stoma (spout). By turning the ileum inside out, the inner mucosa surface was then the surface in contact with the effluent, and this method was so successful it was eventually used worldwide and is referred to as the "Brooke Eversion Technique". This new technique and rapid advances in materials technology, invariably saved peoples lives and undoubtedly gave sufferers an opportunity of a new life from the 1960s. For my Brooke ileostomy and the "simple" bag that I use are marvels of modern technology and they are fundamental to my quality of life. I will describe how I apply this technology in the management of my ileostomy and thus sustain a normal life. I am fortunate that my illness was totally cured by the removal of the colon; others are plagued by complications of Crohns, adhesions, fistulas, prolapse, hernia and other problems but I regret that my techniques will not be sufficient for them.
Some of the things I will describe might seem unpleasant to have to do on a daily basis, but with a positive mental attitude they become second nature. It is interesting to consider that my life expectancy has probably been increased by the removal of the colon (and later the rectum — hopefully removed in time), the second biggest cause of cancer death in men. It is also interesting to consider that there are currently more than a million people with stomas on this earth, that might otherwise be dead. I was astonished to learn in 2001 that my second aunt whom I'd never met, led a difficult life and died of UC in 1986 because she refused to be operated on.
Suffering With Ulcerative Colitis
My UC started when I was 36 years old in 1986 with a sharp bout of diahorrea and extreme anal discomfort that lasted a few days. This coincided with the start of a new job, but I am pretty sure that the apprehension/stress of the new job was not the cause of the UC. It may have been associated with a dental problem that required a course of anti-biotics, for I had a number of inexplicable problems following that. At the time, and until many years later I was not to know that what I had was UC. Following referral by my doctor the Consultant prescribed Asacol, which completely cleared up the problem within 3 weeks and ended 5 months of discomfort. With the knowledge I now have about UC I am surprised the Consultant did not diagnose UC — instead I was told that the cause was probably an anal fissure that supposedly healed. But aren’t we all wise with hindsight — I sympathise with the diagnostic difficulties the medical profession have to deal with.
The problem returned 6 years later in 1992 with almost identical symptoms and circumstances as I started my next job. Again the inflammation was quickly brought under control with Asacol. I had to continue to take 6 per day to keep the problem at bay for over a year during which life was very tolerable. After each blood test I would receive a letter from the consultant physician advising me to take iron pills to replace the iron being lost in my toilet.
During 1993, suddenly the worst symptoms of blood, mucous and frequent calls
to the toilet returned. By now my Consultant was sure that I had irritable
bowel disease (IBD). Over a period of 6 months the inflammation worsened to the
point where I was visiting the toilet every hour and in continuous discomfort
and uncertainty. Eventually warning of the need to visit the toilet became
unpredictable. There followed a period of a couple of months when my movements
(between places) were increasingly dominated by the location and proximity of
toilets. The next 3 months until my operation were the most frightening of my
life. I could hardly get to work — a journey of 20 minutes walk followed by 50
minutes train journey then 15 minutes walk in
Finally my Consultant prescribed Prednesilone that did not improve matters. The Prednesilone may have made matters worse since my appetite deteriorated sharply. Inside 2 weeks I was unable to swallow food owing to scarring of my oesophagus and acute indigestion, both of which I am convinced were caused by the Prednesilone tablets. I was becoming desperate and quite depressed, as I knew that I was dying. It was mid-summer and I was in such a bad state that I couldn't go on holiday with the rest of the family. They were probably pleased to get away from me for a week. I did a lot of thinking and praying that week. I couldn't sleep for more than 30 minutes at a time because I was continually breaking wind by sitting up, and going to the loo. I spent all day and night resting and trying to eat and sleep. I should have been in hospital. My weight was reducing at a rate of 1 Kilogram per week mainly due to my inability to swallow and I knew that something drastic would need to be done. I shall never know whether it was the Prednesilone or simply a deteriorating colon that caused my plight. Unable to wait for my next appointment with my Consultant I arranged an emergency consultation and was immediately admitted to hospital. Once in hospital I felt great relief and confidence that the British National Health Service would sort me out.
After admission, within hours I had been sent to have my oesophagus inspected. This was because my most immediate problem was that I couldn't swallow. Dr Skipper took one look at me and asked me to describe the problem. When I was finished describing my condition, he said examining my oesophagus wasn’t the first priority, and he sent me straight to X-ray my gut, but not before saying "I could give you a neat solution to this problem". This was the first time any of the medical profession had given me any hope of a solution. He gently introduced the idea of a stoma with every sympathy and reassurance. I wasn't going to waste his time and my response was, "Lets get on with it". I felt a load had been lifted from my shoulder. I was X-rayed and fed intravenously for 3 days without any improvement and the doctors were becoming increasingly concerned that my enlarged colon would perforate and empty into the abdomen which could be fatal. My legs were quickly swelling. With a Bank Holiday weekend looming when routine surgery is suspended and obviously not wishing to risk delay, the Consultants were clearly preparing me for surgery which took place on Saturday evening. I had introduced the subject of surgery to my wife in the previous few weeks. By now I was sure that surgery was my only solution to the UC and I did not need any persuasion. With hindsight I would have appreciated a little more practical information about a stoma before the operation. By the time they had decided to operate there was not sufficient time to involve the hospital stoma care nurse that would have been preferable. I didn't even know that such specialist nurses existed. However I cannot speak too highly of the care and consideration given to me by the doctors and nurses in preparation for the operation.
On reflection, when I was searching the WWW in 1994 there was next to nothing on this subject. I am sure there was much in print but public libraries had little information. Now, this is one of thousands of pages that I am pleased to contribute to. Since its inception in 1999 this webpage has been visited on average 7 times every day, so there must be a lot of people out there with related symptoms and I wish you all a quick recovery. Many have sought my advice and I am only too pleased to support anyone that has a question.
There turned out to be some difficulty matching my blood for transfusion before the operation. That was because my blood contained some unusual component. They were delaying the operation for the lack of suitable blood. The uncertainty of finding suitable blood worried me more than the operation or the resultant stoma. When eventually some blood was selected there wasn’t sufficient time to fully transfuse it into me in the 3 hours that remained before the operation. In retrospect, this was probably the normal procedure, but I would have preferred reassurance that they'd found the right blood. I was very apprehensive about any adverse reaction that might occur whilst undergoing surgery.
Recovering from surgery (and UC)
My first recollection back in the ward following surgery, was of my extreme helplessness. I shall never forget how grateful I was for the care given to me by the nurses during the12 hours following the operation before I was in control of my actions again. This seems quite a short time, and it is. I was actually conscious of what was going on and could hear and speak during this recovery period but I had no control over my actions.
I do not remember having any inclination to examine my new stoma. I was primarily pleased to be alive; I could see nothing but improvement ahead and I was longing to start eating. I had not eaten anything substantial now for some 3 weeks. At this time I had still had no detailed explanation, nor read any literature, nor seen any pictures of a stoma or its management. Further I was confused as to precisely what part of my gut had been removed and what remained. A major cause of the confusion was the after-effect on my brain of the anaesthetic that lasted for some 36 hours during which time I found it hard to figure out what exactly had been done to me. I remember how I wanted to talk all the time during this spell and I got delusions, particularly during the night, and one particular fear I remember, was that they hadn't finished the operation and that they would be coming back any minute to take me back to the operating theatre. It took some persistence on my part and attentive listening to the Consultant/doctors/nurses to fully understand what had been done to me. I fear that for those people who do not fully understand or research these subjects they might never actually understand precisely what they suffered from or had done to them.
If you look carefully at my pictures on my webpage you will see a vertical scar about 12 inches long from above my belly button to the bottom of my belly. It healed as a good straight join and is barely visible. You may have heard it said that the stomach and intestines are the body's second heart. I think that's because there is a massive blood and vascular system supplying it. This is, I think, the main task the surgeon has - to terminate all the blood vessels that he disconnects. Though I subsequently learned that removal of the colon and formation of the stoma in 1994 was more straightforward (1.5 hour operation) than the later removal of the rectum (2.5 hour operation) in 2005.
My hopes were somewhat dashed within 24 hours by my one and only real leak (since 1994 until now) due to lifting of the bag flange across a crease on my "shrunken" belly. To compound the problem and my concern, none of the nurses really seemed to know or want to know how to deal with a stoma bag leak. Being a Sunday, no stoma care nurse was on duty nor was one to appear until following the Bank Holiday Monday. We made do with sticky tape and I had to put up with this situation including an odour until Wednesday. A concern at this time was the immense swelling of my legs from the knee down and I was slightly disturbed by the splits that could be seen in my flesh under the transparent skin on my shins.
My first real view of the stoma spout came with the removal of the first bag on Wednesday. I shall never forget my reaction of shock and horror, particularly at the apparent massive size of the spout. Though it does contract with peristalsis (muscular contractions). The stoma nurse’s expression of surprise didn’t help either. She sensed my shock and unease and quickly reassured me that it was a perfectly normal looking spout if only a trifle swollen and it would soon shrink to a more attractive size. It is actually like a small tongue, only more moist as it secretes clear mucous. And thinking like this is one way to overcome the revulsion. Another ruse is to imagine it's a baby's bottom and that's not dirty. Unlike the tongue there is no feeling in the spout so you must be careful not to hurt it or scald it, though it seems to be almost as tough as the tongue but if mishandled it bleeds in minute shows which quickly stop. I discovered in 2004 that hot water, just unbearable to immerse hands in, hurt my spout. It hurt mildly on application and two days later I was scared by what I thought was the return of UC all over the spout. Then after some thought I remembered the hot water episode. But the blistering healed up within another two days.
The first few days were an extremely emotional time as I kept thinking about it and I had fleeting doubts about it all, but I quickly got back on my feet and started to recover from the immediate effects of the anaesthetic. Subsequent bags stayed faithfully secure and my resolve hardened to conquer this problem and get back to normal. During this initial period I was awaiting the results of the laboratory examination of my removed colon to diagnose whether the disease was UC or Crohns. It took a number of reminders to the Consultant before he remembered to debrief me on the histology result. I eventually established that the examination of my colon had revealed UC as opposed to Crohns Disease. It is easy to forget that the result of the lab analysis is important and I am a strong believer in managing my own destiny, when mistakes have been known to happen. This is not a criticism of the medical profession or the NHS — it is simply a fact of life and I do not want to be the subject of human failure.
If your consultant recommends surgery — accept the advice and make sure that the surgeon who does the operation has a good track record and knows what he is doing. It is important to get a well constructed stoma — I had a total colectomy in 1994 and that means removal of the colon/caecum and the ileum comes out of the stomach wall. I recommend a longish stoma spout to ensure it hangs down to discharge away from your skin. Before the operation I did not have any influence on the position of my stoma, nor had I seen a stoma bag. I was fortunate that the surgeon not only knew the best construction technique but also the best position to place it. The spout is about 2.5 inches long when relaxed (90% of time) and 1 inch long when the muscles contract. The latter starts almost spontaneously when food is first swallowed at a new meal. The spout is neatly joined to my skin and was clearly carefully constructed to ensure that it emerges at the correct angle to ensure that it takes a natural position hanging down when standing. I mentioned earlier the problem I had with a leak immediately after the operation due to a crease in my skin across the flange. That crease disappeared when I had put on some weight. So my nice round tummy ensures that I now have a good convex area for sticking the bag flange/wafer on. The Coloplast Assura single-piece bag flange moulds marvellously to the spherical surface. If you get the opportunity in advance of the operation, discuss with the surgeon the best location for the stoma and try sticking a bag containing water for a few days.
I have been struck by the apparent wide range of spouts created by surgeons, though my evidence for this is anecdotal and gleaned from newsgroup postings. I would appear to be one of the fortunate ones, and while it might look hideous, my long spout is functionally efficient at directing the effluent into the bottom of the bag where I make sure it stays. I have never seen an article in the various stoma journals, dealing with the subject of spout construction (diameter, length and angle of entry to the body). I wonder if ileostomists throughout the world might provide the feedback that could create a "Gold Standard" for the surgeons to achieve. Maybe they have one already. Perhaps any surgeon reading this could let me know. I would be pleased to receive any views and if sufficient I could perhaps publish a paper that might improve matters for future sufferers. Contributors could describe their spouts relative to my pictures, and related problems managing it.
Two days into my recovery, a young man who was clearly very ill arrived in the next bedspace. I shortly learned that his problem was UC. He seemed to be suffering exactly as I had been and I could see the inevitability of his ileostomy. Being in as close proximity as I was to him I was aware of his progress and could not help overhear his Consultant’s views and I was fascinated to hear his prognosis develop. Despite spending 4 weeks in adjacent beds (3 of those weeks we both had identical stomas) we never viewed each other's stoma nor discussed the mechanics of looking after it. I guess this was because of the extremely personal nature of the subject. We have kept in touch and he had a successful "pull-through", i.e. construction of an internal pouch, a few years ago.
By the end of the first week in hospital I was preparing myself to leave when I had a setback. My temperature rose a fraction of a degree above normal and I knew that there was something wrong. This was confirmed by extreme pain in the "stump" that by now I had learned remained of my rectum. I was pleased to learn that the stump remained to be reconnected at a later date if all went well. The raised temperature persisted for a further 4 weeks during which I was only too pleased to remain in hospital; my bed was my home and at times I simply didn’t want visitors. During this period the doctors closely monitored me; various scans and investigations were carried out but none revealed anything worth pursuing. I was assured that an infection in the rectal stump was not uncommon and that in time it would correct itself. I had two targets to aim for discharge from the hospital. At the end of 5 weeks (after a misunderstanding between Consultant and nursing staff) I had an unfortunate battle with the hospital authorities to achieve 6 hours discharge to attend my daughter’s final performance in the local theatrical production. I was so pleased to get back to hospital 6 hours later and this proved to me how right the nurses were and just how important an indicator the body temperature is of one’s general wellbeing.
My next major objective was to attend a trade fair in connection with my job 3 days after my daughter’s theatrical production. As if by a miracle, 24 hours before the event my temperature dropped to the expected norm and I immediately felt so much better. The doctors accepted the drop in temperature as enough evidence to discharge me, and I have never looked back.
My faith in God had always been firm. But you can imagine my consternation on the Sunday morning following the operation when the ward sister asked me if I would like a blessing from the hospital chaplain!! A few years later I was ashamed to think that I declined. I could put it down to the anaesthetic but I know that at the time, I didn't want to appear a coward. But reflecting in 2002 after further spiritual development, I think I was showing my own contribution/control of my recovery. Religious leaders are indispensable during normal times, to keep us all going. Despite my respect, I did not really think the chaplain could help me. At moments of crisis, I think we have to rely on our own reserves of faith and desire to live. But there are some things in life that we cannot resolve without God, and I think my faith helped me. Over the next 4 weeks, as one of a handful of people, I got to know that visiting chaplain at the Sunday service. I found great comfort in visiting the hospital chapel daily during my hospitalisation. I am so disappointed at the lack of religious/spiritual interest amongst so many suffering people.
Despite my raised temperature and rectal pain, throughout this period I quickly regained my ability to swallow and my capacity for devouring food regained its previous level. Food had not tasted so good for so long and slowly my weight increased though not as fast as I expected, considering my consumption. Before the terminal bout of UC my weight had averaged 10 stones and my trouser waist had been 32 inches for a number of years. Immediately following the operation the figures were 8 stones and 30 inches. In the 2 years following the operation the figures steadily increased and stabilised at 11 stones and 38 inches!
Learning to cope with an ileostomy
My first outing with the family the following Saturday ended in disaster. Disaster that is for me as it seemed at the time; for to leave my one and only plastic bottle used for washing my bag out in a disabled loo, and to return to find it gone, really upset me. My upset was made worse by our inability to find the same design of bottle anywhere on visiting a succession of chemists. It now seems so silly, but at that time my experience of bag cleaning was limited and I had much to learn. I had become quite attached to the plastic bottle that I had used in the hospital and hadn’t seen anything else that would do the job so well. I have since left about 4 of these bottles in public toilets. I have found a chemist who stocks the bottle and I keep a stock of about 3 bottles.
I returned to work after a 7-week break with a positive mental attitude. I did not want any sympathy or special treatment. I was starting a new life and I did not want my colleagues to regard me as handicapped. Therefore I did not make an issue of my new state — instead I reassured everybody how fortunate I was and that I was in no way handicapped. An early challenge was to gain confidence that I did not indeed smell and I casually asked my colleague at that first meeting to let me know if I smelled. I have never again suggested that I might smell. With a stoma one is especially careful to ensure that other normal bodily hygiene is kept at a high standard. I am absolutely confident that no odour emanates from my bag — fortunately I produce almost zero flatus and hence have no need of venting my bag even during long distance air travel. Years later only my closest, immediate family/friends and people who stumble across this website know about it. Few know at work.
As mentioned earlier my plastic bottle figured prominently in my life. With experience and after losing a few bottles I learned that there are other almost as efficient cleaning methods such as using soaked toilet tissue. And if there is no clean water to hand, urine comes in handy to rinse the bag outlet — but be careful not to get urine repeatedly on bare skin without rinsing out. These alternative techniques take time to discover and a willingness to experiment.
The biggest problem in the first few weeks was managing my sleeping pattern. I found it unavoidable to waken in order to turn over in bed since it is necessary to turn via my back to avoid squashing and possibly bursting the bag. Thankfully the depth of my sleep is not disturbed by the conscious effort to turn correctly and this has become second nature to me. I have since learned that the particular bag I use stands up to the pressure of my full weight without breaking. We have so much to thank scientists and engineers for the technology involved in the construction of our bags not to mention the adhesives without which I shudder to think how our people managed in the early days of ostomy surgery. My first and only leak in bed did not reach the bedclothes and was proved to be the result of my nicking the bag during the prior flange hole cutting. After 4 years I have discovered a method of sleeping comfortably on either side without falling onto my back or stopping the blood circulation through my shoulder. The method involves placing a door draught excluder (3 feet long, 4" diameter filled with cotton wool) each side of me and tuck it into the small of the back on turning over.
After a few weeks back at work, with some apprehension I took my first airline flight. I had read in the magazines about the potential for flatus and bag expansion and other difficulties, none of which turned out to apply to me, perhaps owing to my stable flatus-free output. That means no gases come out in the bag, but this is only if I completely masticate my food before swallowing it. In addition to minimising gases this also minimises the risk of obstruction developing in the ileum or at the stoma if its outlet is constructed small. I have never experienced anything like an obstruction. The risk of dehydration of an ileostomist is supposed to be greater as the colon is not there to reabsorb water into the bloodstream. I must say that I have never experienced it even when I fail to drink enough for many hours. But as a rule I do drink a lot to ensure that my urine is kept diluted to avoid the knock-on effect of kidney stones — as I discovered to my cost in July 2003.
Kidney stones
The pain was very uncomfortable. Stones were forming in each kidney, and another lodged in the tube to the bladder. The latter was very painful until I had an ureteroscopy where no incision is made; a small fiberoptic instrument called a ureteroscope is passed through the urethra and bladder into the ureter. The stone is located and either removed with a cage-like device or shattered with a pulsed laser. A small tube or stent may be left in the ureter for a few days after treatment to help the lining of the ureter heal. To minimise/predict future stones I must have an annual x-ray.
My first x-ray revealed a 3mm stone in my right kidney and a number of smaller stones in my left kidney. The latter should pass naturally, and I think I can now recognise the symptoms which are very mild. When a small stone passes down the ureter it sticks owing to its jagged profile and irritates the tube which gives mild twinges. Provided the stone gradually moves on over a few days, the only other symptom is a lack of appetite. It is remarkable how one learns to recognise what is going on inside the body. You can imagine how difficult it is for doctors to diagnose our problems.
The large stone in the right kidney was broken up by Shockwave Lithotripsy. I had to drink lots and take exercise to pass the bits of stone over the next few days. It was fascinating. I laid on my front and the arm with the gun was brought to bear on my back. A large bag of water acted as the interface to the back. The gun was zapped through the water bag about once per second and that was like a pin prick in the back. The next firing was on a different part of the back within a 6 inch diameter circle. Each zap was of course focussed on the stone which the operator had located between the cross-wires that I was watching on the display. It looked fuzzy to me and I hope it was the stone we destroyed at the end of about one hour. The maximum number of zaps in one treatment is 3000. But he was really pleased with my ability to control my breathing to keep the stone between the cross-hairs, and I had to believe him when he said that it was breaking up and eventually he was definite that it had been shattered into little bits after what must have been about 2000 zaps. I had a red circle on my back for 24 hours which wasn’t sore, nor did I feel any soreness inside, though I passed blood but only once on first urination after the procedure. The consultant reported the results of the analysis of my urine which was near normal.
The Consultant declared that the stones are almost certainly a consequence of losing my colon which normally reabsorbs elements back into the body. I am very happy with my situation. I now know the symptoms of a descending stone, and how to deal with it. My only real concern is how frequently this might happen. So far it is no problem. An annual x-ray will keep this under observation.
Another aspect of losing the colon is the potential need to increase salt intake to compensate for the loss of reabsorption of these chemicals by the colon. I have happily complied as I enjoy salt with my food but there is some contention that it is really advisable as it is detrimental to the heart and further it predisposes to kidney stone formation.
Lessons learned in coping with an ileostomy
An inevitable difficulty with UC and an ileostomy is the isolation. Before the operation only you know how bad it is — and the isolation is largely self-imposed, because there is little that anyone else can do to help except sympathise. After the operation nobody really wants to share in the care of the stoma — it's bad enough doing it yourself. So you have to become proficient, quickly. It helps a little if you have a confidant like I had in one of my daughters who would at least look at it to provide a second opinion.
I have found that I cannot tolerate a tight waistband since it eventually makes me aware of the stoma and a need to free it up to "rest". Thus I have adopted the permanent solution of wearing braces to keep my trousers up. Braces are regarded as eccentric and this leads to ribbing from friends and family but I treat it as a joke — indeed I encourage it by wearing the most outrageous matching braces and tie.
As a scientist/engineer I am fortunate to have had the education and training that were to make easier my learning how to manage the stoma. This may sound strange, but working on the likes of quality control for space equipment you learn the importance of process control, for instance to ensure sound flange sticking to stomach skin. Another obvious thing that many might not appreciate is the importance of chewing all food to a liquid consistency before swallowing. I designed and made a stoma bag support system (more later). Emptying and cleaning the bag can be achieved quite simply by adopting the correct procedure sitting on the loo. This is not to decry my fellow sufferers' ability and attempts to learn and I hope this story helps to pass on some of my skills.
After about 6 months I got up the courage to accompany my children bathing in the local public swimming pool. I learned the value of "picture framing" with medical tape to ensure the bag flange remains secure and also how to anchor the emptied bag to the body by enclosure in my briefs. Swimming is now a regular pastime. With care it is even possible to change in public without anyone being aware of the bag. Wiping the cloth backing of the bag with tissue paper results in only a few minutes being required for the remainder of the moisture to evaporate, enabling clothing to be put on without much delay.
During my first 9 months I attended most of the monthly social meetings arranged by the hospital stoma care nurses at the hospital on the last Friday morning of each month. These meetings were invaluable for me to gain confidence and learn of others' difficulties and triumphs. Further I felt that I was helping others in the same unfortunate position, to come to terms with it. I shall never forget a visit 3 days after my operation from a man (and his wife) that had had the same operation only 4 weeks earlier. And he looked and sounded a picture of health. It really motivated me. So much can be learned from others and the publications of the equipment manufacturers, the Ileostomy Association and NACC. To this day I have never by chance met anyone, including my GP, who knew much about stomas. The hospital stoma nurses provide an invaluable service. My first visit to a manufacturer’s Roadshow proved to be a real eyeopener. I saw the variety of appliances and clothing, and spoke to a wide variety of people with different stomas. My prescription supplier Fittleworth provide a marvellous discrete service including advice and equipment like curved scissors, mirror and toilet bag.
It took about 2 to 3 months to finalise on a one-piece transparent drainable Coloplast Assura appliance system and Simcare skin barrier cream combination that I used for 2 years, but I now no longer bother with any barrier cream. The only problem I’ve had was heat rash under the flange — this was solved by ensuring looser waistband/trousers so that the stoma surround did not get too hot/sweaty.
By 6 months after the operation my full strength had returned and I had learned most of what I needed to enjoy a great life. There was no more abdominal pain except for occasional rectal discomfort. The only real physical disability I have is some difficulty tying my right foot shoelace, cutting my right foot toenails, working under the car but only when the bag contains some effluent and standing up again with skis on. None of these is a serious constraint, provided the bag is emptied regularly. The problem with skiing is the risk of bag flange failure whilst the skin may be sweaty and you double your knees up picking yourself up off the ground. However with perseverance, by 2002 I had learned to stay on my feet. By 2005 I'd learned to negotiate a "red route" and enjoy skiing. One lesson I learned in 2002 was to remove the skis before standing back up — it's so much easier and kinder to the bag adhesion. Another lesson was that it is wise to install a new bag as soon as possible after coming off the piste!
One thing that you must be wary of is lifting heavy objects as the weak point in the stomach wall (at the stoma) is liable to hernia but it doesn't limit my usefulness for I need be no more cautious than anybody else should be to their back.
For the first 10 years I changed the bag every 2 days. I experimented with different bags and barrier systems but I always returned to Coloplast Assura Maxi — I’d be extremely upset if they stopped making the bag (for a short time). Indeed I was rather annoyed when they made a small design change but I got used to the change. In 2004 I discovered how to use Coloplast Solid Paste. I had previously found it unmanageable to mould with my fingers owing to its extreme stickiness. But after reading the instructions, I learned that with damp/wet fingers it is so easy to stretch and flatten into a ribbon to apply to the skin around the stoma. As a result I don't have to be so careful with rising contamination, there is no skin inflammation and the bag flange wafer can be left on for 3 instead of 2 days. By February 2005 I was so impressed with this new procedure. Not only do I get an extra day or two between changes, I have absolutely no skin inflammation now surrounding the stoma. It concerns me that it took me 10 years to learn this. Why was I not taught all the techniques in hospital? What more do I have to learn by chance?
An early problem was caused by my cutting the hole in the bag flange too small with the result that the plastic edge of the hole was cutting into my spout. I didn’t discover this for a few weeks because the cut was on the lower side of my spout, the side I could not easily see. At my request my daughter had one of her few looks at my spout to confirm the problem. This was quickly corrected by cutting the hole larger — leaving 1 mm annulus around the spout. It is important to minimise the annulus since the stoma effluent irritates the exposed skin and can create a serious problem if left to get worse. If your bag is not secure or the skin is damaged and either sore or itching, life would be miserable. Maintaining the skin around the stoma is the secret of a good life with a stoma. I am ultra-careful on bag removal, hair shaving, solid paste application, bag hole cutting, bag locating and sticking, emptying bag regularly (every 3-4 hours) to prevent effluent rising up the bag and contaminating the small area of exposed skin. Further I never recline during the day unless the bag is empty, and when I run I compress the bag over my stoma to prevent liquid jumping up onto the exposed skin. The greatest risk of skin contamination is lying down in bed so it is wise to eat at least 6 hours before bedtime to allow most of the effluent to pass out beforehand. Further I have observed that the discharge seems to stop for many hours once the body is lying down prone.
I am careful to stick the bag in a vertical position for three reasons — so that it hangs without a twist, so that it can be clamped to my right leg in bed without a twist and so that it hangs between my legs while sitting on the WC.
One of the small inconveniences for me of a bag, was the persistent and increasing weight as the bag filled between my legs. Apart from hanging on the stomach/stoma, the bag oscillated. A couple of months after leaving hospital I invented my own solution to these problems by making a small cloth bag from a section of an old shirt sleeve, sewn along one end. The bag is pinned by two safety pins to the elasticated band of my briefs and contains the hanging bag to provide support. This becomes more crucial as the bag fills and the weight and swing can otherwise be felt at the point of attachment on the stomach.
One learns to sleep on the side and to reverse via the back. To save the bag flopping in all directions I developed a scheme about 6 months after the operation, of applying a lady’s headband around my thigh and encircling the plastic clip that closes the bottom of the stoma bag. Through experimenting with different manufacturers bag outlet clips I eventually found that the ConvaTech clip held most securely overnight in the headband. I am fortunate that my stoma position and the bag are just long enough to reach the band whilst standing. I found this a very comforting arrangement since I know where the bag is and I cannot lie on it. But I've since learned to eat long before bedtime, and hence have little output in bed, and I no longer use the headband.
Until 2 months after discharge I used a transparent Coloplast Assura one-piece bag and I then started to experiment with a flesh coloured bag and also a two-part bag. I soon reverted to my original transparent bag, principally because it assisted with fitting the bag and it enabled me to inspect my stoma and its cleanliness following bag emptying. Whilst it is not so pleasant to look at the contents of the bag it is reassuring to know that it is well cleaned around the stoma after emptying. With care during the day I can ensure that the stoma stays clean by emptying early enough, not reclining and by not jumping up and down/running.
I can empty and clean the bag in about 2 minutes whatever the circumstances. The bag hangs conveniently vertically into the WC between my legs. Provided I have not let the bag overfill it is a simple process to remove the ConvaTech clip whilst bending the outlet upwards to prevent flow. Keeping my hands clean and finally lowering the outlet carefully into the WC I open my fingers to let the effluent flow. Without a water bottle it requires one cigarette shaped roll of soft toilet tissue liberally soaked in water. If there is no sink, as a last resort the toilet tissue can be wetted by flushing the loo but it is more hygienic to use one's own urine. A single 150 ml bottle of water, preferably warm, is sufficient to wipe/wash out the bag outlet after wiping the bag outlet clean externally with folded dry toilet tissue. Ideally three 150 ml bottles full of warm water give a perfectly clean bag. After replacing the clip, a dry toilet tissue dries off the water residue. Clearly there is a smell. But it's no worse than that of a normal person in an adjacent loo. It is helpful if there is an extractor to rid the smell as quickly as possible. And there are air fresheners available on prescription.
My output is normally of liquid consistency, i.e. diahorrea. Only after a meal of many vegetables including potatoes in particular, is my output more pasty. The liquid consistency doesn’t concern me, though the pasty consistency makes for a more manageable emptying but this is only of significance if I have let the bag fill too much.
Another innovation at about 6 months was my discovery of the ConvaTec shield that ConvaTech kindly sent me 3 off free of charge. I also discovered the Coloplast linen bag cover. I was not shown these items in hospital. I have found them indispensable since it has given me the protection that I want. This saves me worrying about knocking the stoma on the desk front when standing up and whilst playing with the children (mid 90s), they could not inadvertently knock me. It generally enabled me to forget entirely about the stoma. At first I wore the shield with a belt to keep it in place, but it was during this period I suffered occasionally from heat rash due to the pressure and heat enclosure. I then developed my own unique solution by velcroing the plastic shield to the linen bag. The shield sticks to the velcro sewn on the bag cover. The linen bag hooks over the top of the stoma bag and envelops it. I learned how important it was to have a continuous garment layer covering the bag assembly e.g. vest over the whole assembly to prevent catching the flange/wafer edge as the garments move around slightly. Otherwise there was a tendency for the bag flange to be lifted by any garment edge dragging across the bag edge. It is important to have a continuous garment layer. The smooth surface of the shield enables the garments to slide easily over the bag assembly.
The shield has a further function which in my case is not necessary. It serves as a barrier to attenuate any burping or gurgling. And it could be packed with cotton wool to attenuate sound. However I do not normally produce any wind and normally my stoma is active without making any noises. I believe that total mastication of my food before swallowing, is a major factor in this and as a bonus it minimises indigestion as experienced by all people.
The frequency of my bag changes has eventually stabilised at 3 days between changes. Whilst there is great satisfaction in a new clean bag, the 15 minutes it takes means that the longer it can be put off the better. However there comes a moment when the urge to change is unavoidable. It is announced by an itch that is usually the result of effluent collecting in the cavity created where the flange adhesive "melts" on the underside of the flange hole. My objective is to change before any itch starts — I am meticulous in the care of my skin for I know my quality of life depends on it. After removing the bag the feeling of pleasure is immense while wiping the skin itch; but like all itches care must be taken not to overdo the "scratching". One minute’s careful wiping with warm water leaves the skin feeling marvellous and ready for the next bag. Click on these words if you want to see the full sequence of steps just referred to. Hence it is my objective between changes to keep that area clean and as undisturbed as possible. Frequent emptying helps to ensure that effluent does not get too high to get on skin. When running, this is aided by my supporting/holding the assembly against my belly with my hand. In 2004 I discovered how to use Coloplast Solid Paste. As a result I don't have to be so careful with rising contamination, there is no skin inflammation and the bag flange wafer can be left on for 3 instead of 2 days.
As mentioned earlier, what remained of my rectum (about 6 inches) caused some pain and worry whilst in hospital. This cleared up and subsequently I was only bothered periodically by passing blood in a minute quantity from the rectum. This occurred for a day every few weeks; otherwise there was a small discharge of mucousy liquid every day. This discharge was expelled voluntarily by opening the anus muscle and contracting the rectum. It was preferable to do this voluntarily when the urge first appears, for otherwise I could get caught occasionally with the strongest urge (just like when I had full blown UC) though the risk of a public accident was nil. At worst I might discharge a few drops of liquid and then only if I delayed reaching a toilet for a long time. The rectal discharge was neither worrying nor inconvenient. Since the operation in 1994 I tried Colifoam and Asacol suppositories when my rectum bled but I did not persist because it didn't seem to do much. The rectum was removed in April 2005 — see later.
Assuming that removal of the colon removes all the underlying medical problems, the choice between a stoma and a reconnect, i.e. internal pouch, to the rectum is difficult to make. Different people will have different reactions to each choice. Many people find the idea of a stoma repugnant, and have great difficulty emptying the bag let alone changing the bag and looking after the skin surrounding the stoma. These activities should be done with great efficiency to ensure that the skin around the stoma is kept in tip-top condition. A further issue is the smell whenever the bag is opened for emptying. However the smell is no worse than doing a normal toilet. However the fact that you might be handling the output at the same time as a smell is off-putting to many people. Only you know if you can cope with the stoma which is effectively an open wound though there is no blood and it is not sore to touch and handle provided one is gentle.
The reconnect (internal pouch) has I think four disadvantages. Firstly it is a more complicated operation if done all at once and the delving around in the bottom of the pelvis is not straightforward for the surgeon. So I believe that the reconnect is best left to a later operation when the surgeon can take his time and ensure that the job is done to the best of his ability, and that means secondly minimising the risk of damage to nerves and blood vessels adjacent to the rectum that service your bladder and sexual organs. Thirdly, without the colon the output is very liquid and high in acid (bile juices) that are very corrosive to the anus and can result in much discomfort. And fourthly it would appear that the internal bag associated with a reversal can in itself develop IBD or a type of ulcerative colitis and believe me that is not comfortable.
So I am afraid that it is a very difficult decision but I would favour a stoma as the first stage. After some experience of the stoma you can decide to proceed to an internal pouch in stage 2 at a later date if you find the stoma intolerable. One issue that is common to both options is the skill of the surgeon and I am afraid that you might have little choice in this matter. But when you discuss the matter with the consultants and doctors you should ask what their competence is in the two options and that might help you to make up your mind.
Recent Years
After the stoma operation in 1994, I made follow-up visits to my Consultant every month for 3 months, then quarterly for 9 months and then 6 monthly until in Aug 96 I volunteered to stop visiting. In 1999 I read about the risk of cancer in my rectal stump, especially if it still had UC in it, as mine seemed to have. So I saw my Consultant in August 1999 and he was minded to remove it — because of the risk of cancer developing — though he offered an alternative of a biopsy with a flexible probe to see the extent of the inflammation and/or evidence of dysplasia which is early signs of cancer.
Update December 2004 Annual endoscopy examinations have kept the proctitis (UC in my rectum) under observation. Biopsies taken at random along the 6 inch length, showed no signs of dysplasia until December 2004, resulting in the need to remove the rectum. Apart from the risk and discomfort of the major surgery involved there was a small risk of bladder and sexual dysfunction due to inadvertent severing of critical nerves/blood vessels. But I accepted Colonel Edwards' advice to have the rectum removed on 26 April 2005. An unlikely option was to have a "pull-through", creating an internal pouch and dispensing with the stoma. But this was discounted because I cope well with the stoma and it might be difficult to retrain rectal muscles after 10 years dormancy.
Update 13 May 2005 Notes on surgery to remove rectum:—
· I elected for epidural instead of morphine etc. My whole body from belly button down was immobilised until 3-4 days —no feeling, no movement except to wiggle toes. The latter was reassuring though the anaesthetists seemed concerned about the total lack of movement/feeling. I couldnt sit up. By 4th day, pressure sores developed on heals. On reflection, I think I’d prefer the mobility and self control that goes with morphine.
· Surgery consisted of 8 inch reopening of old vertical scar from belly button to pubic area. The ileum was moved out to gain access to bottom of abdominal cavity to excise the 6 inch rectum. The anus was removed and a neat one inch join appears externally.
· On return to the ward following surgery, I took and ate a sandwich which was well received by my system and indeed was passed out in my stoma bag after about 24 hours, so this gave confidence that all was fully functional. But the surgeon was not best pleased that I’d eaten!!! I blame the hospital communications, for I didn't know any better.
· Soon, the ileum developed what they called ileal colic/paralysis. For about 5 days the ileum was convulsed with uncertainty as to what was up and down. Nothing came out in the bag and meanwhile the stomach was producing bile at a rate of 1 litre every 12 hours. The ileum appeared not to be accepting any of the bile for reabsorption, which happens naturally to the 8 litres of bile that can be cycled daily in a normal person. And it had to go somewhere which was in vomit. Eventually this had to be brought under control by intubation through the nose into the stomach, allowing oesophagus and teeth to avoid erosion. After about 5 days the ileum settled, started processing the bile and gradually water and food by mouth, allowing IV drips to be removed by day 8, and home on day 10.
· I went in weighing 64kg; after 5 days without food I weighed 72kg!!! which is explained I think by fluid retention. After the operation my scrotum was the size of a grapefruit with body fluid for a few days!! I came out weighing 60kg. Isn't that an amazing fluctuation?
· Fortunately I steered clear of any hospital acquired infection, e.g. MRSA, though I saw numerous examples of poor practise that seem quite innocent but clearly result in greater risk of bacterial transference. I believe that only the institution of theatre-like processes, for at-risk patients in closely-controlled wards, will reduce the MRSA problem in UK hospitals.
· After 18 days I'm very happy that bladder and other functions have returned successfully. I'm still quite fragile across the belly and in the rear-end and thus short-tempered. I like to lie down half of each day. I plan to return to work on 23 May.
Update 5 Jun 2005 A new chapter in my life has begun and I have decided to share it with the world as it unfolds. I will update the following log as significant events occur. Please e-mail me if you have information that may help me.
· 23 May I returned to work on 23 May 2005. My only problem was sore leg muscles as they needed toning up after a lazy month. Today my wife relayed a telephone message to me that Col Edwards wanted me to attend his outpatients clinic on Wednesday 25 May.
· 25 May This was the most awful day of my life so far. I was naive to think that Col Edwards had called me in, at 2 days notice, to see him to give me the all-clear. And it should have been even more obvious when I received a letter invitation on 24 May to attend his outpatient clinic on 29 June. It turned out he had the bad news to break to me, that they'd found cancer (poorly differentiated invasive adenocarcinoma) in my rectum classified Duke's C meaning "Cancer has spread through the bowel wall and into at least some lymph nodes". He said it was found in 4 of the 24 lymph nodes surrounding the rectum, that he had removed along with the rectum. He said 5 is a danger point. He is satisfied that all the relevant surgery so far (based on known information) has been done. So I am awaiting a CT Scan within 2 weeks and a decision on whether further surgery (other organs perhaps) and chemotherapy is appropriate. It sounded as though chemotherapy at least is necessary. An immediate issue was just who to tell. And I quickly came to the conclusion to tell all my friends so that their thoughts and prayers are with me. Col Edwards had not been aware of the tumour, even during the operation, so I was subsequently worried he had not got it all out. Subsequent examination of the pathology report suggested to me that there is a significant risk that some may remain in my pelvis. I learned that the tumour was in the closed off end of the rectum, invisible to the endoscope camera. Clearly the dysplasia that had been detected in the rectum wall in December was related, and I regret delaying the operation until after my skiing holiday in April, but that's life.
· 27 May I had what I thought was food poisoning when nothing was passing through and I was vomiting everything. The hospital A&E did nothing except bloods and x-ray and some gentle prodding and the gut started working again Saturday lunchtime. The doctor said it was a partial obstruction. Though they did nothing they did a wonderful job, and knowing they are on my doorstep is really reassuring. I've never had that before. We'll just take these things as they come and deal with them.
· 1 June I've had a long bank holiday weekend to think about it. I know that time is of the essence so I went into the hospital today and on the 2 June to progress an appointment for the CT scan. It was scheduled on 20 June, but I subsequently managed to get this improved to 9 June. My anal wound has almost completely healed and is no longer uncomfortable to sit on.
· 3 June My 55th birthday. On Friday I got the 0639 train to work and had breakfast with some work colleagues to celebrate. On Saturday evening Linda, Hayley and Tamsyn took me for a meal at the Royal Oak Pirbright.
· 4 June Today I received a letter from Dr Middleton, an oncologist, to attend his outpatients clinic on 13 June. So things are moving as fast as I could hope for.
· 9 June I had a CT scan today. Preparation (drinking 1 litre of orange/iodine) took 90 minutes and then the 3-part scan took just 20 minutes and diagnosis will follow on Monday 13 June when I see oncologist Dr Middleton. On leaving the hospital today I made my customary visit to the charity bookshop, and I was astonished when my eyes landed straightaway on Betty Shine's "Mind Magic". I have been impressed by her stuff before and reading this afternoon I was inspired by her evidence that "there is always someone wishing to link up with your mind and help you, but unless you meet that person halfway.....". I thank all friends for helping me through the uncertainty.
· 13 June The oncologist's expertise, CT scan and blood test results came together today with a good prognosis because there are no obvious signs of secondary growth/development of the cancer. So I have accepted the advice to proceed with 5FU/pump continuous chemo for 3 months to sweep up any residual cells. Radiotherapy may be required in the pelvis — Dr Middleton will refer back to the colorectal surgeon Col Edwards for more objective assessment of whether he got adequate margins on the tumour.
· 16 June Today I received the most wonderful inspiring card from my great friend Fay Broyles. Fay has overcome her own problems and her faith in God is awesome. Fay is the kindest person I know and we lost Internet-touch in April 05 when she lost her job. I miss her email support in recent weeks but Air Mail to Texas only takes 8 days.
· 23 June I was counselled at St Lukes Cancer Centre, Royal Surrey Hospital and again I was given options for treatment. I chose the PICC that entails feeding a plastic tube from a prominent vein in the crook of the arm into the heart to deliver the chemo from an infusion pump that was shown to me and its operation/maintenance described. It will deliver drips over 7 days and be replaced by the District Nurse. The external chemo "syringe" is quite large but I'll cope with it and tubes in bed which will be the only problem. It will hang around my neck inside my shirt during the day. I'm disappointed that, despite my repeated enquiries the two consultants (colorectal & oncologist) hadn't completed their correspondence on whether radiotherapy is necessary but I'm confident the delay is a result of their workload and that I don't need this treatment. There isn't too much urgency to get on with the chemo because its efficacy is not brilliant, and I'm relying on the hope that the offending tissues have been removed and that there is low immediate risk of further growth. I will probably start chemo on 28 June. Whilst at the Centre, I took the opportunity to visit The Fountain Centre that provides support and in particular, on Complementary Therapies. It is a wonderful tranquil place and I read much literature. I have never been one for unconventional therapies, except God and my own willpower. But one thing I'm going to pursue is diet and I started next day with apricots, tomatoes, carrots and spinach.
· 25 June I attended the monthly Bags of Support group meeting of the hospital stoma support group at Frimley Park Hospital. As previously mentioned, this group provides an invaluable service, as I rediscovered today. I met someone who was in exactly my position 2.5 years ago, despite a number of major setbacks in the interim. That was reassuring, especially as she looked and sounded a picture of health. Secondly the visiting speaker's subject was craniosacral therapy which made me reconsider my views on complementary therapy. As an electrical engineer, I am aware of the wonders of the electro-magnetic spectrum, Maxwell's Equations and indeed at a deeper level, quantum mechanics, Heisenberg's Uncertainty Principle and Einstein. Studying them at University in 1969-72 was hard going and I was glad to take up a career in more practical applications of engineering. But in recent years my study of matters spiritual brings me back to these subjects and, whilst I'm no more capable of understanding the subjects in depth, I am more respectful of their relationship with God and how this Universe functions. The craniosacral therapist clearly had little scientific expertise, as I exposed when I asked whether she had found differing success depending on what shoes she was wearing whilst conducting hands off therapy. I explained in a kindly and informative manner how the insulating properties of one's shoes (and indeed the humidity of the air) govern the electrostatic charge build-up in the body and as her therapy was linked to the electromagnetic field (aura) surrounding the patient's body likewise with her body..... She didn't understand the technicalities that I raised, but acknowledged their significance. This showed me how she could learn from me just as I could learn from her. So I am going to try some of this — the objective being to repair my immune system if it is not working well and anything else I don't understand!! At £20 per hour it's not going to break the bank.
· 28 June Good news and bad news today. First the good news is most encouraging. Since 13 Jun I have awaited the colorectal surgeon's considered opinion on whether he believes he removed all the margins of the tumour. Following numerous phone calls to hospital secretaries, today I was sent a letter explaining that the mesentery?? tissues (including the main blood supply/lymph drainage) to the tumour site were removed along with the colon, by Mr Skipper in 1994. That left the rectum supplied by other blood supplies from the lower pelvis and my lower rectum that shows no signs of cancer, so this gives me confidence that metastases to liver and lungs were unlikely and tissues adjacent to the tumour may not be contaminated. We will see. Thank you Mr Skipper. Now they will finalise my chemo (no radiotherapy I expect) and I have been asked to pencil in Monday 4 July to get underway with chemo, though the chemical combination may now be changed by Dr Middleton, given this new information. The bad news is that my only root-filled tooth shattered yesterday and broke off at gum level, leaving an exposed root. This morning the dentist gave me three options — surgery to cut out the root, fill over the root, or leave exposed and brush clean daily. I am aware of the controversy in the dentistry profession about the possibility that bacterial contamination in root fillings may be the root/route of many body infections. So I decided to fill it over next Thursday 7 July and in a few months time I will have the surgery.
· 1 July It's already 2 months since the operation and I'm feeling great. I've deliberately put on nearly a stone in weight in anticipation of a poorer appetite!!! I was quite relieved to learn today that I've got a slot at 0830 at St Lukes Cancer Centre on 4 July, hopefully to start the chemo treatment. The delay was caused by the Consultant correspondence that I instigated. But it was worth it as follows. The letter I received confirmed what I'd been told on 28 June; the surgeon states "My feeling is that the operation was entirely adequate and that because of your previous surgery where the normal drainage of the rectum was altered when the colon was removed this may actually have some beneficial effects as far as the prognosis is concerned". This is good news and I don't anticipate radiotherapy being necessary.
· 4 July I'm sitting here this evening feeling great. It's now 6 hours since I got this infusion pump installed. It was a long day but they are so nice in St Luke's Guildford. I wonder why cancer patients get treated so well. If we were all so nice to each other all the time the world would be a better place. The pump dispenses 5FU at a rate of 23mg of 5FU per hour. I haven't felt any high yet!!
· 6 July 48 hours after starting infusion (and 2 days work), I have felt no adverse effects whatsoever. This morning immediately after rising, as I emptied my bag in the WC, I found blood dripping from my PICC arm at a modest rate. I was sure the exertion rising following dormancy in bed must have upset the catheter exit wound. After wrapping the arm in bandage, I went to St Lukes rather than my local hospital and I was pleased to find Sister Gemma (who had installed it) on duty to examine and redress me. It turned out that I was the first patient at St Lukes, to receive the new Groshong NXT catheter and the best method of securing the line externally was not clear. Lying in the crook of the arm the catheter exit point is subject to much arm flexure and the best method of anchoring close to the exit is not obvious. I wish they had entered the vein a few cms down the forearm. Now I will have to be more careful than I had expected to be, when bending that arm for the next 3 months.
· 11 July Yesterday was the best of the year regarding the sun. So I was out awhile getting a little more tan. My treatment supposedly limits my sun exposure. I'm being careful of course, but so far no noticeable effect. I even drink a couple of glasses of wine or beer or whisky despite the warning on the Warfarin that alcohol should be avoided. But I'm on a very low dose of Warfarin. So to summarise, after 7 days chemotherapy I'm still my old self; my appetite seems better than ever and I hope this continues for the 3 months treatment. I'm working full days and keeping up my voluntary work. No signs of lethargy/tiredness or any other potential side effect such as nausea, mouth ulcers, sore hands or sore feet. The stoma output hasn't changed though that has always been diahorrea in any case. The District Nurse came today to change the Infusion Pump. After some initial uncertainty and a telephone call because she didn't recognise the new catheter termination, this was quite straightforward but it is essential to maintain completely sterilised conditions while reapplying the new dressing. I am not at all happy with the way they have terminated the catheter adjacent to the crook of my arm. When I bend my arm the fine tube kinks and I wonder if it will last 12 weeks. And it is not very comfortable but to reinsert it would be too much effort and they might do no better next time.
· 21 July I was at the hospital this morning for my 3rd week check-up to ensure that chemo is not having adverse effect. Blood tests were OK, so I continue with the treatment, and still suffer no side-effects. I am keeping remarkably well. The only side-effect being a mild taste/sensation in the lining of the mouth. I made my first craniosacral therapy appointment for next Tuesday. I got home at 1330 and was going to go into work in Central London, as I have a few jobs to complete before 2 weeks holiday. But seeing London bombing on TV I just stayed home. Linda and Hayley go to Florida next week. I'm receiving my brother and his wife for 5 days before going to Torquay (seaside resort in south west England). From there I'm going to travel by train to Berwick to see my Mum for 3 days in time to return to get my infuser changed on Thursday 4 Aug.
· 26 July Today I did my first ever alternative therapy (Craniosacral). It was an interesting experience. I went in open-minded, and though nothing extraordinary happened - I didn't get any strange feelings except pleasure as this nice lady caressed me. It was especially nice when she finished off with my feet. And I nearly fell asleep twice. But her few spoken words were helpful and reinforced my inner strength. Whilst at the hospital I went to show the nurses the red track, coincident with PICC line vein in my upper arm that has been sore for 48 hours when I straighten it. She called Sister. Sister called a doctor and I've started an anti-biotic course plus painkiller, though I don't think the latter necessary. They want me to go back Thursday for another check on progress.
· 28 July The discomfort in my arm has eased and the doctor is confident that it is phlebitis — inflammation of the vein in reaction to the foreign body (catheter). But I will continue with anti-biotic to counteract any risk of secondary infection. Otherwise, after 4 weeks chemo I'm feeling wonderful and I'm off to Torquay today for 2 days and then on to Berwick to see my Mum for 3 days.
· 31 July Despite cloudy skies I had a great 6 days with my brother and his wife latterly at Torquay from where I returned this afternoon. The phlebitis has cleared up completely, so much so that I had no qualms about disco dancing last night, but I was slightly concerned when the girls started twirling me by my PICC arm. On undressing in my hotel room I was shocked and concerned to realise that all the clingfilm and steristrip adhesives dressing my PICC termination, had completely lifted (because of sweat) leaving everything dangling. At 1 o'clock in the morning without supplies, there's not a lot you can do; I considered going to the local hospital but ended up strapping it together with Sellotape which I was pleased to have refreshed this evening at Frimley Park, none the worse off. I relate this to show how I want to get on with the things I enjoy doing, even if the doctors told me not to engage in physical exertion of my PICC arm — you should see me disco dancing!!! And I'm so grateful that I am as fit as I am to do all I want. I'm off to Scotland in the morning to see Mum.
· 11 August Thank God for another wonderful week in perfect health, though my horizon (now 3-5 years minimum) is increasing week by week. I spent 7 hours in Royal Surrey (RS) today as they first couldn't get my blood results (White Blood Count lost!!!) given yesterday at Frimley Park Hospital. So I had another blood test at RS and then they had to make up three infusion pumps for the next 3 weeks and then finally I had to go back because they'd failed to give me the prescription card without which the District Nurse would not have changed my pump next Thursday. Never mind, everything looks good to me and I continue with the final 6 weeks chemo.
· 1 September I have had a wonderful 3 weeks in the best health I've ever had. Maybe I never appreciated it before. I've had one craniosacral, one reflexology and one body massage free of charge thanks to Tricia and Kim at the Fountain Centre. I've practiced reflexology (foot touch/mas