Peter Witt - Manufacture, Wooden Canoes & Paddles

183 Sunny Corner Road
(PO Box 66)
Portland NSW 2847
Ph 02 6355 5144,
Mobile 0408 427 534
Email Enquiry Form

dealing with cancer
Dealing with Cancer

Home | Price List | Dinghies | Choosing a Canoe | Canoes | Tips | Dictionary | Enquiries | Lithgow Tourism

Cancer

"Life was going to be a bit Diferent now"

Prolouge

My body and I have been in various states of conflict for 54 years now. Depression has been an issue that has caused upheaval in my life at various times. It was the depression in conjunction with a variety of physical ailments that seem to well, just occur intermittently that brought life to a carthartic precipice late in 1997 at 46 years of age.

I had lived for 46 years looking for answers as to why I had minor health issues interspersed with periods of phenomenal health and vitality. Over the years I have dealt with many doctors, specialists and allied alternative natural health professionals to try and get a handle on my health problems. All helped to a greater or a lesser degree, but no one had been able to put all the pieces together so that I had the consistent vitality, physical and mental health I have strived to achieve throughout my life.

This story documents the journey with my physical health that came to a precipice late in 1997. My mental health has also played a key role in life but documenting that journey is far more painful.

Things came to a head in mid 1998 when I was admitted for emergency surgery and woke up minus some internal plumbing as result the of bowel cancer. Investigation and navel gazing along with a variety of minor and major complications in the years since, resulted in some of the pieces of the jigsaw puzzle coming together. Genetic testing revealed that I did not have the recessive gene associated with bowel cancer. However the undiagnosed erratic bouts of Ulcerative Colitis and Choangalitis (Grainy Liver) were more than likely predisposing agents. The Odyssey continued till mid 2004 when my Spleen was finally removed in an attempt to bring an end to a nearly 12 month battle with ITP (Idiopathic Thrombocytopenic Purpura)

Fortunately my story has had a happy and surprisingly simple ending. Some of the adoptions and changes I made to my life as documented in the following pages are still undergoing improvement and modification.

1998 - 2001

My story will not be unusual; many will have been through far worse, not quite been so lucky. But I think articulating the progression of my health, analysing the decisions I have made and documenting the adaptations I have made to maintain my lifestyle may be of assistance to others who through no choice of their own, are going through, or have been through, similar experiences.

Each of us is unique, we are a product of our environment (physical and social) as well as our genetics. As such my solutions may not suit anyone else. My solutions and thinking work for Peter Witt, they work for my lifestyle, my state of mind. It is imperative that we have some understanding of ourselves, how & why we are what we are, what can we cope with, what do I need to keep me sane, what really matters to me, all that sort of stuff. I am no expert, our answers must fit for our families and financial circumstances. In many, many ways my journey was made far easier with a supportive family structure and within reason financial security. I certainly do not have all the answers. I do not confess to totally understand myself, but I think I understand and have come to a level of acceptance of many things about me. On many occasions I wish I were a little different. I have no doubts that my family at times feel the same way. My life has been dominated by the necessity to control my state of mind. As one continues to read please keep in mind that some of my decisions and things I have done have been from the perspective that I have some definite physical and mental limits.

During this journey another of my idiosyncrasies at times surfaces, adding an additional dimension to this story. I have this utopian view of life that the world could/should be a perfect place, that we should all care, we are all in the right job, we are all competent, there is no corruption, self interest, hypocrisy, bigotry, crime, wars, drug or alcohol abuse, that there is enough for everyone to live with dignity etc. I am not good at holding my tongue. If I think something is wrong I say so, I ask questions, and I do not suffer fools easily. Well, if one gets to deal with any business or profession, one quickly finds out that things are far from perfect. The health/medical profession is no different. Often things will not go as planned, you will come across individuals who do not care, are incompetent, negligent, in the wrong job etc. From my perspective over five years, I have suffered more than my fair share from that system and such individuals. I only chose to undertake what I hope was my final operation (May 2002) with a safe guard in place to minimise the unnecessary distress. It did work to a degree, not perfectly but wow it helped. Now I am not doctor, nurse, hospital bashing. Over five years I have been cared for, and treated by some of the most wonderfully caring, competent and professional people to whom I owe my life and sanity. But I am trying to give people who have or may be undertaking a similar journey to mine, an accurate picture of what to expect and some of the adaptations I have made to my new circumstances.

Previously I talked a little about my state of mind. Throughout my life I have done many things and created a living environment that has facilitated me to control my state of mind so that I could lead a relatively normal life. It is vital to my mental and physical health that I am able to continue with my existing life style. I hope some of the things I have found with my diet, changes to clothing, ways, to deal with some of the postoperative stuff may be of assistance to others.

Most of the solutions are mine and they do work for me. As difficulties arose with my operations and getting back to a normal life I found the doctors and nurses to be (I will use the phrase loosely) “as useless as tits on a bull.” They were not the patient, they had not had the cancer and complications, and they did not lead my lifestyle and could not help me with the necessary adaptations. I am no expert. Some of the solutions have arisen from someone saying something or from reading, or others hints & my willingness to think that might work for me & being prepared to give it a go.

The Life Style

I guess that I am relatively active. I live in the country and have built my own passive solar house on 4ht. We have approx 1ht of gardens, with orchard & vegie patch & all the work such entails. I block approximately 12 ton of hardwood a year to run the central heating system, need to be able to fence, dig postholes and fell trees. I have a part time canoe building business necessitating lugging around canoes up to 40kg. My primary recreation is bushwalking and canoeing. I undertake extended wilderness bushwalking and paddling trips all over Australia. A backpack can weigh 20kgs plus. When canyoning I need to be able to spend 8 or so hours in my wet suit without having to worry about toilet stops. Bowel cancer, with ileostomy has been no impediment. I have simply adapted and looked for solutions to inconveniences. I hope my journey so far and some of my solutions may be of assistance to others.

Getting Sick

We had just returned from long service leave where we had taken our two teenage children on a 4WD and bushwalking trip to Central Australia. On my first or second day of work I received a telephone call asking if I wished to travel to Thredbo with the SES as part of the rescue crew. Upon returning to work after Thredbo I was not the same. I was starting to feel funny. Things were written off as stress and in November 1997 I was off work on stress leave. Over the next 6 months I received considerable support from my colleagues and employer, the NSW Dept of Education, trying to get me back to work. My health continued to deteriorate with a number of admissions & quick discharges from hospital. During one horrific emergency admission a surgeon woke me from a pethedine stupor to tell me I was going to surgery or I would be dead by lunchtime.

I came out of surgery less two thirds of my bowel courtesy of a major bowel obstruction & tumour in the bowel. Recovery was not pleasant or forthcoming. Some week or so later as things did not improve I needed a heart line to feed me. Somewhere between a week to 10 days my mental health deteriorated to the point I was planning to get access to the roof to jump. The hospital social worker helped sort out some comfort issues but on day 10 I had made a decision. I had to go home. If I ended back in hospital so be it. The sign above my bed read nil by mouth but during the last day whenever meals were served the smell just drove me crazy. All I wanted to do was eat. Thank god for a darn good doctor who I suggest was very attuned to my state of mind & did not fight me leaving for home.

Surprisingly going home worked to a point, my internals did begin to function again. I was to start chemotherapy but something else was not right. My blood test results were crazy. I was referred on to other specialists to try to pin down what was going on internally. I needed platelet transfusions too & had a million more tests. Nothing was found but it was thought I had had a reaction to my anaesthetics. During this time I needed day surgery to remove some horrible big blue stitches that had started to protrude through my surgery scar. Because of the blood problems, my surgeon was not prepared to give me a general anaesthetic so this was done under a local anaesthetic. I would not volunteer for that again.

Chemotherapy started some 6 months after my first operation. Each week I was getting sicker and sicker and my health deteriorated to the point where chemotherapy had to be stopped some six weeks into the six-month course.

Over the next 12 months or so, after being referred to a number of specialists and dozens of tests and visits to day surgery, the pieces of the puzzle started to come together. I was only 46 when diagnosed with bowel cancer. I had led a very active life style, by and large looked after my health and ate a healthy diet. At the time I had no known history of cancer in the family. As the pieces came together it was found that I had a long-standing case of ulcerative colitis that had only manifested itself erratically over the years. Hindsight is a wonderful thing and things that had occurred over the years and were written off as stress now had a different slant. In addition the other funny one was a disease called choangalitis (grainy liver) a disease of the bile ducts of the liver, which sometimes manifests itself in bowel cancer patients.

Over the past 20 odd years once in a blue moon, sometimes only once a year or less, I experienced funny attacks that left me delirious during the night, I had the shakes and bad sweats. I generally had to get out of bed & the only relief was to sit in a hot bath. Later I found a couple of Panadol helped. Strangely the next morning, apart from being a bit tired, I was totally back to normal.

As time progressed life got back to relatively normal. I was walking and paddling again, leading a normal family life. I was not as well as I was pre cancer but things were not too bad. During one of my 6 monthly colonoscopy checks another large polyp was found in the bowel. It was not cancerous but could not be removed either. In light of the colitis & recurring polyps I was sort of given a choice. There was no great hurry but the rest of my large bowel needed to be removed. It was suggested I seek other opinions from specialists in Sydney. My choice was to play dice with the possibility of cancer returning, or to remove the rest of the bowel & to either have an ileostomy and bag or have a “J” pouch formed.

Over the next three months I considered the options. I talked and read stories about people and their experiences with “J” pouches and ileostomies. The stoma therapist at Nepean Hospital was very supportive and helpful. My decision was to go with a “J” pouch. There was nothing to lose and if the worst came to the worst & things did not work out for me I would simply end up with a bag anyway. I was happy with my choice right up to the week before my scheduled operation and I started to take into account my mental stability and life style. I needed to be able to bushwalk, paddle, travel, and canyon. My thoughts began to focus on the past 12 months. I remembered two, weeklong, bushwalking trips. Both had similar stories. On Barrington Tops, in torrential rain, I was continually dropping my pack and running off into the scrub to dig a hole. During the night I would need to get out of my sleeping bag, unzip the tent in the rain & wind to go & dig a hole. That happened maybe 3-4 times during each night. Many of these visits were "just in time" scenarios as well. How could I spend 8 hours in a wet suit to canyon, or sit in a kayak in the ocean or long lake crossing if I could not totally depend on my bowels? My thinking changed. A “J” pouch was a risk I was not prepared to take. I need control over my bodily output and my state of mind necessitated me to minimise the possibility of time in hospital, operations and life style changes. At 48, happily married with two teenage kids, I did not think the cosmetics of an ileostomy and managing a bag posed such a problem.

Operations do not seem to be simple affairs for me. Things were explained pretty well to me before the operation & my view was, “Ok lets do it.” My memories after the operation were of being wet & uncomfortable. I was lying in a pool of blood. What they did not tell me about was the possible healing difficulties when one cuts out the rectum & stitches up the backside. The hospitals solution was simply to put a cover on the sheets & let my wound weep. The bag & ileostomy were no problem but the bum certainly was. I quickly began to think I was on my own, these people have no idea. I needed a solution. I had my wife go out & buy me some menstrual pads, super absorbent. I had my solution. My dignity disappeared a while ago, and a solution is a solution. I used those pads for some 6 weeks. Although not perfect, this visit to the hospital was not overly traumatic, except for one incident with one of the young interns. This young man was undertaking the wrong profession, he needed to pursue a career in a meat works. Hell, he seemed to be on duty a lot. One incident I remember after he had three goes at my hand to put a cannula in, I told him to piss off and to find someone who knew what they were doing.

I went home on a Friday, seven days after the operation, but was back in day surgery the following Monday. I had developed an abscess and my rear end was not healing. The stitches on my rear end were cut & the wound had to be left open to drain, scar up & heal from the inside to the outside. Now this was one lousy job. My time in hospital was now determined by my ability to complete my own dressings. Each day I had to use my finger to keep the wound open and insert a dressing that acted as a wick to drain my internals. Not particularly pleasant. In hospital I would give myself a number of hits with the painkiller before I could face doing the dressings. At home I would spend a lot of time in a soothing salt-water bath. It was some 6 weeks before the rear end had healed.

My second major surgery occurred in September 2000.Apart from the time taken for my rear end to heal, living with my stoma and bag presented few problems. My physical and mental condition rapidly improved. I gained weight and strength and was back bushwalking and canyoning in January. As a matter of fact I was feeling better than I had in 10 or so years and thought my life would have been better if this had been sorted out years ago. I shall deal with the adaptations I made to enable me to resume my life style later on.

The one possible complication with an ileostomy that was not fully explained to me was the possibility of a hernia occurring and what could be done if I was so unlucky. Guess that there are not a lot of people my age with ileostomies that lead such an active physical life style, so in hindsight a hernia was inevitable. Some eighteen months later I was back in hospital to have a rather large Para stomal hernia repaired and to have my stomach meshed. The meshing of my stomach could not have been done when my stoma was formed, as there are generally the possibilities of complications and infection, so they are usually done at a later date if necessary. As per usual things do not seem to go particularly easily for me. I entered hospital weighing 84kgs and left some two weeks later having lost 13kgs over 14 days.

After having my stomach muscles cut and intestines laid on the operating table three times in 4 years I think my odyssey with the medical profession and my physical health has finally come to an end. I am a vastly different person mentally to the one who started this journey some four or so years ago. That is a different story.

Adaptations & Changes To Live With An Ileostomy

Coping with the operations

Before agreeing to have my last operation to fix the Para stomal hernia and adhesions, I gave some serious thought to how I was going to cope. I have stated earlier that the events of the past 4 or so years have had a profound effect on my mental state and ability to cope with things. To be honest these changes are not simply the result of the operations but some other dynamics and life events have interacted with my physical health to change me.

I hate being helpless in hospital and need to be able to manage my stoma and bag myself as much as possible after surgery. As I undertook my last operation in a private hospital we had lined up that my wife was to stay with me in my room to help with my post operative care. This proved to be a godsend and saviour for me with a million & one little things. She paid a fairly high price for the week of disturbed sleep & stress as things did not progress well for me, but it enabled me to cope.

Fluids. Going without food for 11 days did not present any problems apart from the 13kg weight loss. What presented my problem postoperatively were fluids. Nil by mouth & just sucking ice is generally no problem, except I had developed a bad distaste for ice. Coping with the postoperative pain (I am also allergic to morphine) the nasal gastric tube (another aversion…….. reasons with past operations for this) my need for fluids & managing my bag was beginning to take a toll mentally. On talking to the doctors about my difficulties the type of fluid was not the problem so long as it was clear but the quantities were the important thing. Thinking laterally I solved this problem. My wife lined up with the kitchen staff to freeze small containers of apple juice, and we bought from the supermarket Zooper Doopers to freeze & some different flavoured water ice blocks. My taste & fluid difficulties were solved. Another word of caution. If you can negotiate things & make changes with your doctor make sure it is written in your notes. Nurses can be a rather authoritarian group & if it is not written into your notes it does not occur.

Seven days after my operation I was beginning to feel not too bad & was moved from the self-administered pain doses to oral painkillers. Things were so well that my wife went home to get a full nights sleep. Well the wheels fell off the billy cart that night & my mental state went back to rock bottom. My choangalitis (grainy liver) played up & I had my first attack in some 12 months. I had the DTs; I saturated my bedding with sweat. I could not get out of bed by myself to change my wet sleeping gear, get into a hot shower, look after my bag & because I was on 6 hourly doses of oral painkillers the nursing staff would not budge to give me anything to help with the fever. I was in such a desperate state that I had to telephone my wife to come back to the hospital late that night to assist me. Things got sorted out the next morning when my doctor arrived & was told of the nights events and that was when the realisation occurred that if things are not written into your notes the nursing staff do not budge, sometimes to the point of stupidity & total indifference to a patient’s distress.

Living with a bag

Living with a stoma and bag is not an addition one would ordinarily make. But it is not an impediment to leading a totally normal life and returning to whatever your life style was pre operation. One needs to have an open mind, adapt & look for solutions to inconveniences.

The companies who make the appliances make a fairly good living and are always seeking your custom. All generally have 1300 or 1800 telephone lines and will happily offer you advice with regards to their products and send you free samples of these products to try. Try everything. We all have different needs and life styles. Nurses & doctors may not necessarily be the best people to offer advice here. You have the stoma and need to manage a bag, our individual physiologies are unique. Ultimately you need to work out what system works best for you.

It took me the best part of 12 months to sort out what worked best for me. I am sort of active. I need to spend 8 hours in a wet suit without a loo stop, I swim a lot and on bush walking and canoeing trips may decide not to change my bag and flanges for 4 days. I have had an occasional accident with my bag, two times in really inconvenient places but now I regard my system as bomb proof. This is not the place to promote brands but for me, one system is so far ahead of the others it is not funny.

The biggest challenge my stoma presented with my bushwalking and canyoning was my inability to have any sort of firm attachment across my abdomen. Backpacks have a waist belt that transfers the majority of the weight from the shoulders to the hips. All waist belts necessitate a tight belt across the abdomen. My initial solution to this problem was use a ladies backpack. A ladies backpack has a shorter back harness than a pack designed for males & hence the waist belt could be fastened above my belly button. This arrangement worked reasonably well, but put heavy downward loads onto my lower abdomen which I think contributed to the formation of my parastomal hernia. Although I started the project some eighteen months ago, I have since finished a new hip harness, utilising a custom made fibreglass support that loads a back pack on my hips and a waist belt elevated to give me some 20mm clearance above my stoma. No more hernias I hope.

My abseiling, climbing harness presented similar problems. All conventional harnesses require tight attachments across the stomach. To solve this problem I spent an afternoon with a harness manufacturer in Sydney trying on every conceivable combination of harness. (keeping in mind that weight is also of critical importance) The only harness that would allow me to return to using ropes was a harness designed for abseiling front wards. This is not the way one would choose to canyon if you were intending to come home. By changing the attachment points on this unconventional harness and combining it with a light chest harness I was now able to canyon and climb safely without needing any attachments or pressure across my abdomen. On trips I may spend up to eight hours in this harness and a wet suit, completing multiple abseils, prussicking, carrying a 20kg pack and lasting without a loo stop.

I undertake these activities on totally equal terms with the other members of our parties. Most participants are generally totally unaware of my medical condition. I always notify the leader, give him/her a copy of my emergency information sheet & check that it is okay for me to participate. I hope I never need to be rescued, as I suspect the police or coroner would ask some pointed questions about why I was where I was. Just in case, & also for my own use & reference, I keep a diary and log book of all the trips I undertake. If I happened to have an accident the log book is the testimony to my ability and competence and experience, taking the responsibility from the trip leader or the clubs I am a member of.

Preparing for Emergencies

I have two emergency kits. One I use if I am simply going out for a few hours or the day. The other I use for trips of up to a week.

Day kit

My day kit simply consists of a spare bag, some deodorant; a couple of skin lotion wipes to clean my hands and a small plastic freezer bag to dispose of a bag if I need to change it. I use a two piece system so would normally only need to change a bag, as the flange can be good for up to 4 days. When going out I always carry a small plastic bottle of deodorant to help with the smell when emptying my bag in public toilets etc. This day kit fits into a small draw string bag smaller than a packet of cigarettes, small enough to carry in a pocket or I generally carry a small kangaroo skin hand bag large enough to hold my wallet, coins & the day repair kit.

Overnight Kit

My overnight kit consists of sufficient gear to undertake two complete changes, including a razor and plastic bags to dispose of used bags & flanges. I have a small shoulder bag with multiple compartments measuring 16cm x 13cm x 7cm (far smaller than a ladies handbag & can also be carried on a belt)

One important addition to this kit is an information sheet. Due to the extreme nature of my recreational pursuits if I had an accident, needed a helicopter rescue etc the people rescuing me need to be aware of my medical condition, how to look after my bag etc. Sometimes I walk and paddle solo, but when with a group, (I also lead groups) I always ensures someone responsible is aware of my medical condition in case of an emergency. This information sheet also carries the telephone number of my surgeon, family etc.

Clothing

Underwear

I think females have a great clothing advantage when it comes to managing stoma and a bag. In some ways the clothing challenge was my greatest hurdle in returning to my normal lifestyle. My stoma is located on my right hand side approximately 30mm below and 50mm to the right of my belly button.

That location has an advantage and a lot of disadvantages. The only advantage I can think of at the moment is that for the majority of the times I wear a large bag and the bag closure finishes just above my crutch level. Any lower and it would be continually digging into my thigh and genitals. Male underwear and pants are totally unsuitable for my stoma. The waist band generally is located straight across my stoma. With male underpants I needed to have my bag lying outside my underpants. A simple, cheap and very comfortable solution for this has been buying female undies. I am not sure whether I am embarrassed or excited when I go to pick out my female undies, generally I take my wife to disguise my agenda. Full female briefs and control pants come up to or above the belly button. The ideal solution is to be able to have my bag underneath my briefs. The major problem with female undies is the lack of ball space so generally in some brands (specifically with control briefs) I need to go a few sizes larger than normal to leave enough ball space.

The most comfortable pants I wear are a cotton lycra blend, the sort of pants that ladies might call gym, aerobic or sport shorts. There are a number of brands available, you can get long or short leg varieties & I find them more comfortable than the male jockettes I used to wear pre stoma. I wear “Collection Basic” a Best & Less Brand. On occasions when I need a little more support, especially bushwalking or when wanting to disguise my bulge a bit, I also wear either medium or firm control briefs (there are some really nice frilly ones if they turn you on as well) I weigh in the vicinity of 80 kgs. In a light control brief I need a female size 18 but in a firm control brief I need to go to a size 20 to allow enough ball space.

Outwear

Trousers and shorts presented a problem primarily from the location of my stoma and secondarily if I wanted to disguise my bag bulge a bit. The majority of trousers & shorts either fell below my stoma & constricted my bag or the waist was right over my stoma. Overalls are a solution to part of this problem. black and beige. The female body is a bit shorter than a males & I have simply got the sewing machine out & lengthened the shoulder straps.

I have bought Bib & brace overalls & cut the legs off to make shorts out of them. They are phenomenally comfortable and practical. I have been stopped in the street and asked where one can buy them. Denim overalls are commonly available in female clothing stores. For the summer again in female clothes you can buy shortalls. Big W carries them at a price of between $12 in $16 in denim, , black and beige. The female body is a bit shorter than a males & I have simply got the sewing machine out & lengthened the shoulder straps.

I also but pants with a baggier fit and there is stacks of stuff around that is meant to be worn baggy, They look good and work really well with braces. During the cooler months I wear comfortable baggy pants and braces bushwalking. So there is something else to enjoy shopping for, as there are lots of nice braces available. Once you wear braces you may decide they are actually more comfortable than belts.

Another pant that I discovered 6 months or so ago is exceptionally comfortable. Mountain Designs makes a pant that can be bought as shorts or zip-off-leg longs. These pants are made from a very tough & durable fabric, are made to be worn at belly button height and have lycra side panels that provide a very comfortable firm but flexible fit across the stomach These pants are made in a unisex fit for males & females but they are a bit pricey. I can wear these pants with a t-shirt tucked in with nothing looking odd. (Ostomates will know what I mean here)

Swimming

Another problem. Up until recently I have been using a shortie sleeveless wetsuit. This is excellent to swim in and protects my stoma and bag no matter what I get up to in the water. I generally wear a swim top as well. I have since found a more comfortable alternative. A canoe manufacture makes a pair of paddling shorts with a 2mm neoprene backside and a heavy lycra stretch front. They are worn at waist height and are so comfortable that on paddling trips I wear them all day & use them in preference to ordinary clothes around camp. My wife loves hers as well & people on trips often comment on how comfortable they look & ask where they can buy a pair.

Food

There are some foods you need to be careful with if you are an ileostomate. I have been very lucky in that I still eat all the foods I did pre stoma, even all of the 'no no' foods. I do not eat large quantities and I tend to chew them fairly well. Sometimes I get a bit ravenous & just need to eat. I need to be very careful then, as on one occasion I remember whole kidney beans passing through my stoma.

Due to the nature of my recreational pursuits I primarily change my diet to control my stoma output and to minimise some of the possible medical problems of the stoma. From my understanding the two main problems of living without a large bowel are that primarily the large bowel absorbs fluid and salt.

I now eat a little more than I did pre stoma without putting on weight and on occasions I just have to stop to eat a little. I am also conscious of keeping up my fluid intake. When walking, to help with the fluid and salt issues, I take biochemic 12x cells tissue salt tablets and eat to greatly slow my stoma output. One needs to experiment, but some foods have a profound impact on the consistency of my output. Rice, pasta, potatoes, banana & oats greatly thicken my output & help reduce fluid use. When walking and especially when needing to be in a wetsuit for eight hours my breakfast consists of porridge made from a mixture of rice flakes and rolled oats. Lunch will usually include rice or pasta. The other absolutely wonderful food for ileostomates is dried whole banana (not banana chips) If you shop around it is possible to purchase whole dried banana for approx $11kg. These are my staple snack food when walking & paddling. They thicken my output, taste beautiful, are one of the few dried fruits that you need to chew & can suck on. Sometimes I have used drugs such as Imodium. All drugs do have side effects & if possible I prefer to go without. I have found that modifying diet for the occasions I want to control output works equally well, if not better.

Towards the end of long days in the bush I can get a little sore & bushed still & one thing that works exceptionally well really & does help to thicken my stoma output is to take a couple of Panadeine Forte Tablets. I do not use them often but may use a few a day on walks & paddles.

Purchasing Medications

If one needs a few prescription medications the costs can mount especially if one does not have a concession card. There are ways to greatly reduce these costs. Pharmacy Direct supplies drugs at greatly reduced costs. One needs to use the postage system wisely, it is not cost effective to post a single script but getting scripts in bulk will provide considerable savings. For example if one gets their doctor to write a script for a bulk pack of Panadeine Fort, 5 packets of 20 tablets (100 tablets) the cost from Pharmacy Direct is approximately the same as buying a single script of 1 x 20 from a local chemist plus postage.

Sex Life

My wife and I have always had a very active, healthy, enjoyable sex life. I was warned by my surgeon that as soon as one starts playing around with ones insides etc there is the danger that ones sex life may be affected. I can say that my sex life is better now than it was before my operations. The surgery did not improve my sex life I think that it simply did not damage anything inside, but more importantly, relationship wise, we both have been through so much over the past few years our relationship has been strengthened. I have had to deal with myself physically and mentally. I think the combination of all of these things has had a positive effect on my sex life.

By and large having a bag is more of a mental problem for me than my wife, I am the one who worries about the cosmetics etc. The cosmetic solution took me a while to sort out but I purchased a couple of female boob tubes. They are comfortable to wear, come in a variety of colours and I simply wear one around my waist and it beautifully covers & contains my bag during sex.

As I use a two-piece bag system I sometimes change to a smaller bag before sex as well. I can change to a midi or mini size.

As a final word, having an ileostomy and bag is certainly no impediment to an active sex life. One should be able to pursue exactly the same types of sex etc post stoma & bag, as they did pre operations.

Physiotherapy

There were some unforseen consequences from my operations that my surgeon & stoma therapy nurse did not warn me about (Maybe they did not know) These probably only became problems for me because of my need to resume my very active recreation interests. At times I have had a bad back & have also had a couple of knee operations over the years.

When I resumed my normal bushwalking my knees played up very badly. I visited a specialist in Sydney fully expecting to need another knee operation. But no, my problems did not require surgery but were due to the degradation of my leg muscles and quadracepts. He referred me to a local sports physiotherapist. Two visits to the physio a new stretching and strengthening program solved my problems quick smart.

Six months or so later my lower back started to cause me some problems. Back to the sports physio and the culprit this time was a consequence of the stomach surgery. As a result of my weakened stomach muscles the multi difidus muscles that control the individual vertebrae of my back had been degraded. Another stretching and strengthening program solved this unforseen consequence of my surgery.

I also visit a chiropractor and sometimes I just need to be belted into shape. Ones pays a price for every thing. Surgery does have foreseen & unforseen consequences. I found my sports physiotherapist to be worth his weight in gold in my quests not just to solve a problem but to try to develop a routine that takes into account my surgery & lifestyle to stop problem recurring.

Conclusion

In no way am I advocating that a bag is preferable to having a “J” pouch. Sometimes I wonder if I made the correct decision. In regard to my medical history, my mental state and the lifestyle I wished to maintain I do believe the decisions I have made were the correct decisions for me.

This is my story and my solutions. I hope some oestomates or people who may have to undertake similar surgery, may find some of my solutions helpful. I have covered a lot of territory in a superficial manner. If people have any questions, would like more information or would like to pass on their tips please do not hesitate to contact me.


2002 to 2004


For a time now life has been back to relatively normal. I shall paraphrase that and say relatively normal for me. Others may think bloody abnormal, but we all have our own points of view. I am walking, paddling, building canoes, gardening, doing jobs at home etc. As has been the norm for the past six or so years, I have my off and on days. I have those days where one lacks the energy and motivation to do anything very constructive and those days are interspersed with periods where I can work a normal day and feel on top of the world. A hard weekend bushwalk, cutting down trees, jobs to finish the house. Maybe I over do things and if I slowed down a little the discrepancy between the good and bad days would meet in the middle. Pigs might fly. The thoughts of getting back to walking, paddling the jobs I want to do at home is what has kept my head together over the past six or so years, so in some ways I am stuck between a rock and a hard place. The physical activity keeps my head together. One could be cynical here and say that it does not necessarily do a very good job but struth the alternative would be bloody frightening.

Health wise things got a little complicated again. Around August 2003 I joined a weekend walk with the National Parks Association into the Northern Wollemi Wilderness. In many ways I am very spoilt. By and large I only do nice walks & paddles. A lot of walks especially some of the well known classic walks can be what I call crappy. Again things are always relative to what one is used to, the country one has been into, what one has knowledge of and many of the what I will call spectacular walking areas in the Gardens of Stone, Wollemi National park etc that are not published, do not have tracks and are much more difficult to access etc.

I had not walked much in this area before and the walk into Corricudgy Canyon proved to be another of those special places that very few people access. The walk was into beautiful, spectacular wilderness with a nice group of people..

From such a positive weekend things turned nasty with my physical health starting to deteriorate again with more bad days than good. After the usual profusion of trips to the doctor, specialist, various pills and a million blood tests to eliminate every strange complaint on the planet we played a waiting game. Basically my body was chewing up my platelets. My physician gave me a diagnosis of Idiopathic Thrombocytopenic Purpura (ITP). ITP is an autoimmune disorder that causes very low platelet counts. It is a disorder in which a person produces antibodies against his/her own tissues.

It is not known what causes the problem. There are many possibilities, but the doctor & I played a “lets see how things go” game for some nine months. Oodles of tests, blood tests to check my platelet count up to 3 times a week and courses of prednisone. Most of the times I did not feel all that bad but there were some worrying signs. I still kept walking and paddling (Had to moderate things a bit) and if I scratched myself a bit I bled like a stuck pig for a while.

My son and I erected a carport at home and a spanner slipped while I was tightening some bolts. Jordan had to get me to the Doctors quick smart as the blood just poured out of my cut fingers. My physician thought that there was a possibility that the problem would gradually remedy itself. In keeping with my luck, things did not go as hoped.

At times my prednisone doses were up to 60mg a day and were playing havoc with my body. Sometimes I was as high as a kite, my sleep patterns were totally destroyed I was eating like a team of football players and began to balloon out in the face and stomach. Not to be unexpected I was getting to the end of my tether and had decided that no matter what I had to get off the high doses of prednisone. People will have their own perspectives on how I think but as I was not going to live my life on the high doses of prednisone, I would take any option the doctor suggested, or say, I have had a good life with the peace & tranquility of death being preferable to a life of mental and physical torment. That’s relative to ones perspective as well, but I do not have the ability to keep my head together without the outdoors.

The only option suggested was to have my spleen taken out. My physician said that that solution worked in 50% of cases to fix ITP. Taking the spleen out creates problems of its own but I would deal with them as they arose (or choose not to).

The surgery became sort of an emergency as the doses of prednisone were increased again to get my platelets up to a level where the surgeon could operate safely. Bathurst private hospital here I come. St Vincents Private Hospital proved to be the nicest hospital I have been in so far. Surgery was a breeze. I was up for a walk (bent & stooped, zapping on the pain killer button but struth I need to make myself look good) that afternoon after surgery, and left the hospital in 4 days.

A Whole New Life

Home and recovering as the prednisone doses were gradually reduced to zero, the platelets were improving & getting back to normal but I was back to the old lethargic states. More lazy off days than good, the states when you just do not have any energy and enthusiasm. So as night follows day my head space becomes worrisome again. Not as an excuse but we are all different, we cope with things differently, behave differently, have had different life experiences. I know that if I eat perfectly, get adequate rest, do not get stressed out, meditate etc, etc I function far better physically and mentally. But I do not have the personal discipline, energy or whatever to continue with that path for any length of time. I am not too bad normally, but, I do overdo it physically, sometimes get slack with morning breathing and stretching exercises, love a hamburger, when I am tired and whacked out need a coke to drink, have a sweet tooth and find it hard to pass up dessert when I go out, let alone all the tempting not to good for morsels they tempt you with in shops etc. Thank god I live out of town and do not face those temptations every day. Within those parameters I was at the state of ok, where the stuff to now? The normal medical profession certainly had no answers. I made an appointment with a naturopath just to see what they might say. After looking at my medical history & being on the receiving end of me being in a bad space, I was really in a terrible space at the time, the naturopath said in the overall scheme of things she could treat the gout a bit, blood pressure etc but that may not bring me the whole body changes I was seeking. The naturopath suggested I look into Glyconutrients. After some reading and researching I thought there just may be something in this nutrition stuff but I had a major hurdle with how they were marketed. “Network Marketing basically” The manufacturers have world wide patents so there was not much choice of a supplier if I was going to give this stuff a go.

Nothing has worked very well for me over 40 years and I have tried everything, so trying something else for a few months will not do any harm. The optimist in me says well the way I am is not all that good, just maybe this might help.

I have a whole new life. I am not prefect in any way but after many years I now look forward to and enjoy each day as it comes and generally when asked how I feel, or how is it going my honest answer is usually 10 out of 10. Research suggests that Glyconutrients may need to be taken for 6 to 24 month before the body gets itself back into full swing. My overall head space is different now. I can think clearer, do not get so stressed out & depressed. Physically I am better than I have been in 10 years. Working at home, walking, paddling etc I again have the energy & enthusiasm to cope and enjoy the Sate Emergency Service (I had not been active for some four years). No matter what we do, I believe it is important to give something back to the society we live in. If we work long hard hours we may only have money to give. If we have the time, volunteer work may be the go. There are probably two ways to judge a persons overall character, one is how they treat animals and the other is what they give back to the society they live in when there is not material or status gain expected or forthcoming in return.

The past 54 years have been a long and at times difficult journey, mentally and physically. At times the past seven years have been bloody horrible. But now life once again is fun and enjoyable. Within some physical constraints I am able to undertake the physical challenges and have the lifestyle that I desire (probably more accurately keeps me sane) and for the first time in seven years the head space and depression is under control and no longer buggers up my life to the degree it has in the past. This old body isn’t doing so badly considering its age and the abuse and trauma it has been through.


NB. At times in this story I have talked about my headspaces. Depression has been as big a challenge for me as my physical health. Writing about the depression, how it has affected my life etc is a little more personal and difficult. So in writing I have chosen to detail separately how my life has been affected by depression to the ongoing battle with my physical health. They are invariably linked and in reality I do not believe I can have my physical health without my mental health and I cannot have my mental health without my physical health. (what a horrible scenario)

September 2004

Just when I think my health is all in hand the wheels fall off the billycart again. I have obviously been a very bad boy in a past life and this one is my penance.
For a considerable time now I had been getting minor blockages with my stoma. Generally I would gently manipulate my intestine to clear the blockage. I was away walking on the weekend of the 4/5 September and on Sunday night I experienced the worst blockage I had ever had. The blockage took some 8 hours to clear after numerous cups of warm herbal tea, gentle massage and sitting in a hot bath. Something was not quite right with my plumbing and I started to worry about another parastomal hernia or strangulated bowel.

I am always reading about the state of our hospital system but the chain of events that follows illustrates that the system can work very efficiently at times. I guess I am lucky in the context that my doctors have got to know me and my problems well over the past seven years and if I phone up needing attention or assistance they deal with me promptly. As well having private health insurance obviously helps.

I phoned my local surgeon on Monday to explain that I thought I had a major complication looming. He was not in his offices so his secretary contacted him during a break in his operations. My surgeon telephoned me at home to see what was going on. He suggested that I simply come in for day surgery on Wed to investigate what the situation with my stoma.

I drove my self to the hospital on Wednesday morning having arranged for my daughter to drop in after university that afternoon to take me home. The outcome of the day surgery was really positive. My surgeon thought I simply had some excess loose intestine between the mesh in my stomach and my stomach muscles that was blocking up as my internal output was trying to work its way through my small stoma opening. Dr said that he would book me in for surgery the following Monday. All he need to do was to cut my stoma free, pull out the excess intestine that was bulking up & becoming blocked, cut that excess off and re stich the stoma to my stomach. The surgery was relatively simple and should fix the blockage problem.

So our hospital system …….. I phoned my surgeon on Monday with a problem, I was booked in for day surgery on Wednesday and then had other surgery on the following Monday. (Not bad service from a system in crisis)

I had no concerns about the surgery, as what the Doctor said made perfect sense, Ideally, my plumbing would function better if my stoma was approx 4/6mm longer (that will seem stupid to someone without a stoma as you really need to have your own to understand) Anyway when I was being prepped for surgery I mentioned what I wanted to the nurse and asked for a texta to write on my chest that I wanted my new stoma to be 4/6mm longer than it was at present and if complications arose that required him to totally open me up, to relocate my stoma 20/30 ml lower than it is at present.

We joked around about sign writing my chest but the nurse became concerned about the Doctors reaction to finding a message written on my chest in surgery. It was my chest and my request but not wanting to risk getting my nurse in trouble I wrote my surgeon a note with my requests, that I gave to him when he came to say hello as I was lying in the prep room prior to going under.

Recovering after surgery was my worst recovery from any previous anaesthetic. It seemed to take forever for me to become sensible again. When the Doctor came to see me after the surgery he said the surgery went fine and the problem should not recur.

Not trusting how the doctor or nursing staff would have attached the replacement flange and bag in surgery I decided to do a change myself in the shower the next morning. When I removed the flange they had fastened in surgery I was totally devastated. The doctor had cut my stoma totally off. How the **** is this going to function. I thought I needed my stoma longer, not flush with my stomach. I could imagine someone with a colostomy functioning with a flush stoma as their output is solid. However the output from an iloestomy is very runny. How the hell could I keep a seal.

I was going to go home that afternoon and when the doctor came to see me on his rounds I said I was devastated that he had cut off my stoma as I had left him explicit written instructions that I would function better with a longer stoma. My doctor explained that he suspected he had fixed the problem that caused the blockages and when the swelling went down my stoma would extend out further.

Things just deteoriated from there. I found it impossible to maintain a seal around my stoma. I was changing appliances a couple of times a day. The skin around my stoma was becoming totally corroded from the leakages from the ileostomy.

Panic and anger started to set in as I was reading my self for a major operation to totally relocate and refashion a new stoma. (Another two weeks in hospital and three months recovery , just like I need another hole in the head.)

I arranged to visit the surgeon during a break in his day surgery program and he reinforced that he thought that as the swelling went down my stoma would extend. It did not quite work out as he thought. Struth I was angry with him as something he thought was relatively simple had totally gone haywire.

I telephoned my professor in Sydney seeking an urgent appointment and explained my predicament. As per my luck he was away and I could not see him for some three weeks. I had no idea my stoma was going to hold up for three weeks let along my mental state.

The professors secretary suggested, that in the mean time I get in contact with the stoma therapy nurse at Nepean hospital re my difficulties. The nurse thought that there was a chance I could get my ulceration heal, making the suggestion that mercurochrome and calamine lotion may work. She also sent me a range of new appliances to try to see what might better suit my new plumbing. Low and behold, the Mercurochrome and calamine lotion did the trick and one of the new samples of a convex flange enabled me to keep a seal for two to three days without leakage or too many failures.

Once again the storm has passed. My stoma is definitely functioning far better without any blockages so that problem has been fixed and so long as I can maintain a seal I will leave my plumbing as it is. Any decision to undergo further major surgery is best left, preferably for ever.

Epilouge

The remarkable changes that have occurred to my life in the past 12 months I can only attribute to Glyco Nutrients. Mentally and physically I have a whole new life. I took over as Controller of Lithgow State Emergency Service (voluntary position) in late December 2004. 12 months ago, I could not have contemplated coping physically with the workload, let alone mentally with the challenges and conflicts that invariably arise with such a position.

I suggested my wife, Anne, who has always been in perfect health except for a dicey knee with osteoarthritis start taking some Glyconutrients to see if her knee improved. Anne plays competitive squash and still bush walks with me but needs to wear a cartilage support knee brace. Anne continues to play squash without discomfort and comments that she finds bush walking easier without the soreness and discomfort afterwards.

My daughter Morgan (21 years old in July) displays some of my troublesome mental attributes at times, so a month ago I gave her some Glyconutrients to trial. Morgan only takes a half dose and commented that after a month she felt better (not as moody, irritable and tired) the interesting comment she shared was that her boy friend had passed a comment that she had changed and was easier to get along with as well. It may not be the Glyconutrients but she continues to take them.

Jordan, my 20-year-old son, is at the Australian Defence Force Academy as an Officer Cadet completing a civil engineering degree. When I bush walk and paddle I use some sport specific Glyconutrient supplements to help me cope with the heat, fluid loss, and aid my recovery from strenuous exertion. For his 19th birthday I gave Jordan some Glyconutrient supplements to try and see if it helps him cope with the rigours of military training. Jordan’s comment is that "the stuff works"

My mum is 85, living by herself and still runs her hairdressing business part time. She has osteoporosis in her back and had a major fall a few months ago tearing some muscles from her pelvis. She has been largely immobile and miserable since. After enjoying exceptional health things were beginning to get her down. Now she has just started taking Glyco Nutrients. It will be interesting to see how if she feels any different in a couple of month’s time.

If anyone wishes to contact me with regards to any aspect of my physical and mental health or Glyco Nutrients, please do not hesitate as I enjoy talking to people and swapping war stories. 12 months ago I was not recovering well after my spleen was removed and I was on the verge of giving up the battle. My starting point was rock bottom physically and mentally. I was clutching at straws with nothing to lose. Something turned my life around.

General information on Glyco Nutrients can be found at www.glyconutrients.com
Scientific Information can be found at www.glycoscience.com

Peter Witt
183 Sunny Corner Road (PO Box 66)
Portland NSW 2847
Australia
Ph
0263555144 MB 0408427534
Email witt1@bigpond.com
April 20, 2005

Home | Price List | Dinghies | Choosing a Canoe | Canoes | Tips | Dictionary | Enquiries | Lithgow Tourism

Auzzie.Biz © Peter Witt Canoes 1998 - 2009 DebWeb