My Journey Through the Healthcare System

My experience with the health care system started a long time ago, I was about 12 and our doctor diagnosed sagging arches, told me to roll up a towel with my toes, at 12 so much for the health care system. Next came when I volunteered for the Dutch air force as an electronics technician. This was the most intense check-up I ever received and after one and a half days of prodding and poking, I was deemed fit to join the air force, but after they told me that I would have to sign up for six years I decided against joining, six years for a 17 year old is a life time. After six months in an office in time study of an aircraft manufacture I signed up on a cruise ship as a bellboy, worked my way up to waiter in first class, worked long hours but had fun travelling to and from Rotterdam to New York, around the Caribbean and South America. After a year it was time to change and I was being drafted for the Dutch army. I decided that would be a waste of time and at nineteen I emigrated from the Netherlands to Canada. My first real experience with the Canadian health care system was when I slipped on the wet grass, kicked my then 12 year old daughter and broke a toe. After three days of the somewhat painful experience, I decided to visit our family doctor who send me for x-rays and then confirmed that I had broken my toe, AND he couldn't do anything about it. In 1978 he delivered my youngest son in the middle of the night, we spend quite a bit of time talking while we were waiting for my son to arrive. He was an excellent doctor providing healthcare appropriate to his patient, he would offer to prescribe, but explained if it was necessary or not. Unfortunately he retired. Next experience with the healthcare system came in 1999, had a mild heart attack, ended up in the ER, decided that I was allergic to Morphine; spend 5 days in the hospital, made sure I passed the stress test. I stopped smoking, changed my eating habits as well as my lifestyle, which caused my cholesterol to go from extremely high to below normal, dropped most of the medicine for cholesterol and high blood pressure and continued living a normal life.

December 2011 – I noticed that walking up one or two flights of stairs I ended up slightly out of breath, since this was rather unusual I decided to check it out. I called my doctor to make an appointment. But went to the walk in clinic instead where they did a bunch of tests and referred me to a heart specialist. In spite of the significant number of various test for the heart they couldn't find any problem, finally it was determined that I had a very low haemoglobin count, So after spending some time trying to find a heart problem, it was decided I still had one and it was working fine. Next a visit to a gastroenterologist, a gastro what?

The gastroenterologist scheduled an endoscopy and a colonoscopy. I asked the doctor that if he used the same tool would he mind doing the endoscopy first; I got a blank look he explained that they don't used the same tool, then realized what I had said and started to laugh.

After the procedure during which I was luckily mentally absent, he apparently asked a general surgeon to have a look, of course just what I wanted to have my insides shared.

But fortunately for me the general surgeon decided he would take me as a patient, and again with luck on my side for having this surgeon, he explained that I have four masses of colon / colorectal cancers and he has to operate and remove my colon.

He explained what an ostomy is; he tried to tell me that it may be possible to eventually reverse the procedure.

After researching the procedure, I quickly realized that reversal was just a gesture to let me down gently. I remember complaining to the receptionist about false hope; then she explained how devastating it is to some people, she tells me that some people walk out crying. The surgeon schedules a bunch of procedures, x-rays, blood tests, and at the last minute decides he wants an MRI. This typically takes six months of waiting for a spot, my surgeon personally goes down to the MRI department and asks for an appointment for his patient but it would have to be today, I get a call around 9:30AM, can I come in at 12:30 for an MRI, I agree then half an hour later: "Do I work with metal, such as grinding or cutting, yes, could I come in at 11:30 for an x-ray of the eyes.

April 12, 2012 I end up in the operating room where the surgeon removes my entire colon, including my rectum, closes me up and eight hours later leaves me with a stoma.
Obviously I wasn't quite awake when this cute young nurse comes by to show me how to replace this bag that is stuck to my stomach, or maybe I was awake but not paying attention. It was the first and last time anyone showed me how to handle the replacement of the flange / bag. Five days later I was home dealing with a change in bathroom methodology. My biggest problem was sitting down with a rectum that needed healing.

I soon learned that the best idea was to tape my cheeks together to prevent the (rectum) wound from opening up when sitting down. Then came the chemotherapy, first I was outfitted with a PIC line, first try fail, but she got it on the second attempt, which apparently makes her an expert, especially since there was no pain involved. Chemo was a pain in the neck, just sitting there doing nothing, started to read books (again), eventually complained that if they were going to continue to give me placebo's I would not come back. They assured me they were giving me all the chemicals I needed, I asked them if they wouldn't mind putting some extra mind altering stuff in, no luck.

I complained that if they gave me the appropriate chemicals, then how come I still have to pay for haircuts.

During this time I continue to work and I return to the cancer centre often, I park on a side street, (hate paying for parking) and walk 15-20 minutes to the hospital; they give me a bag for the chemicals to wear during the week, finally a real use for my fanny pack. The positive aspect of all this is there is a period where every week a nurse comes to my house asks me to follow her to my bedroom and asks me to disrobe, whereupon she dresses my PIC line, my rectum wound and leaves....

After the operation I researched in various countries for information on being an ostomate, I subscribe to the Mayo clinic for cancer information, do research on the various methodologies, appliances. Learn of a study in Sweden of providing ostomates with a titanium valve which when applied to the stoma would alleviate the need for a bag, possibly soon to be available for people with a colostomy.

I'm waiting for research going on to provide an ostomate with a 3d printed colon / rectum using stem cells, but probably not in my life time.

Read an article where a 3d printed oesophagus was created for a baby whose own oesophagus would not stay open. I firmly believe that we are on the threshold of extending life by decades.

After the end of chemotherapy I went on to radiation, and again I advised the people operating the device that I would not come back unless they turned the machine on, and in spite of their assurances I couldn't help but ask then why do I not have any side effects?

Clearly I have been very lucky in my experience with cancer and its removal; there were no side effects and any after effects I blame on old age, of course attitude is paramount and my surgeon states that my attitude is the main reason it has been this easy. In 2015 my radiation oncologist informed me that it wasn't personal but he didn't want to see me anymore and then my chemotherapy oncologist would continue to see me, although she must be getting fed up with me since she reduced my visits from four months to six months.

In one more year I am sure I will be declared cancer free.

Interesting to note, in 1999 I was in hospital for five days, in 2012 I was in hospital for five days. In 2013 I ended up in the ER with what turned out to be a gallstone and guess what I was in hospital for seven days, it is in elective surgery and consequently was continuously postponed due to more urgent matters. Finally on the seventh day my favourite surgeon came back at 10:30 at night to remove the gallstone and at 11:00PM I was in the recovery room, note this was after the surgeon worked his regular long day.

During one unscheduled visit I asked him why he leaves the stoma protruding while it seems to be the norm in North America to leave a rather short stoma, the doctor explained he was educated in Russia and there it is the norm to leave a reasonable length of stoma, I'm glad he did leave mine the way he did, since the intestines expand and contract to move the stool forward, and if it is small and then contract it is obviously more likely to cause leaks, and requires a convex flange, but I always wonder why there is no concave flange, since I have a stoma on top of a hernia.

I have had a few experiences with leaks but now practically never have major leaks, I usually tape the flange using medical tape (Strappal) and it will start to irritate the skin before any leak shows, time to change. Also instead of using a belt I use a sports bra to keep the bag close to the body, and as a side effect it contains any small leak.

The most significant leak was of my own making, driving tends to put a strain on the flange and causes the skin to try and pull away, one time driving home from visiting a friend about 120 KM away I felt the bag and needed to empty. I stopped at IKEA, and thought I vent the bag before going into the washroom, big mistake, on the way in I realized that the bag was full and not with air, and is now on its way down.... I made it into the washroom, got cleaned up as best as I could, went back to my car retrieved the garbage bag from the trunk, placed it on the drivers seat, drove home removed the items from my pockets and jumped into the shower clothes and all, placed my clothes in the washing machine and was ready to go. Had a good laugh, stupid me serves me right to try to vent a full bag. I now use Ost-EZ vent and to thicken the output in the bag I use Gel-X, which is a desiccant (drying agent, it absorbs the liquid, same stuff you find in the little packets with electronics).

Having an ostomy seems to make you liable for dehydration, consequently I now drink three to five litres of liquid a day, it is either water with zero calories and zero sugar crystals, fruit juice preferably sugar free, have to watch my sugar intake due to having type 2 diabetes, or my own recipe for smoothies, ¾ litre of yogurt (any kind) honey and or sweetener 1 banana (for potassium) and 1 lb of fresh (or frozen) fruit, strawberries, mango, raspberries, peaches, apricots into the blender, I also buy the occasional litre of Kefir, a pro-biotic yogurt drink.

In conclusion it's my opinion that having an ostomy is a bit of a nuisance, but there is an upside, when driving out in the country (Canada is a large country) and you have to go just pull over to the side sit in the passenger seat and fertilize the country.

Recently I was interviewed by a university journalist student and she published and article: "what's in the bag"

The article can be read here or on my Flickr accounts, somehow I ended up with two accounts and am unable to combine them.

https://theroguemagblog.wordpress.com/2015/10/22/whats-in-a-bag/

While I am now finally retired I continue to work on my hobby:
Wood working the result you can see on my flickr page, A few years ago I build a wishing well for my front lawn, but I couldn't keep it since people insisted on buying it, over the years I have build quite a few but the latest is probably my most successful and it is actually sitting on top of a real well. Of course the real satisfaction comes from the thank you letter I received from the owner (I posted the letter on my Facebook. Electronics, recently purchased a fully functional computer for 35 (US) Raspberry PI 3 and intend to purchase the next one Raspberry Pi 0 5 (US), yes 5, A far cry from the first computer I build, but not as cheap as the first radio I build, a crystal radio (1957), but the antenna was not cheap, then followed a single tube radio (1958), followed eventually by a portable radio (1962), I still fix computers mainly for friends for free – always hated doing the invoicing, It's a lot easier now I can use "Teamviewer" (a program that allows me to control other computers including my own) and the internet, fixed problems for someone in Holland and in Florida, quite a difference than when I introduced online computing using terminals in the early 70's at Xerox of Canada. In closing let me say that it is imperative to not let having an ostomy define who you are, in the end it is a bit of a nuisance, but nothing more, and without it I wouldn't be around to make everyone's (including my children's) life miserable.

On the other hand it is very easy for me to be able to have this attitude; I never suffered with a debilitating disease such as Crohn's, UC or any of those IBD diseases.

Unfortunately any of the websites do not seem to have any cross references, which makes it difficult to find answers, but if you need help don't hesitate to ask, I seem to have this frustrating idea that when a subject tweaks my interest I need to know as much as possible. Also I experiment to find a compromise between effectiveness and cost, but please note I am not cheap, just frugal, for example Eakin rings are probably the best barrier available but at around 5.00 each, a cheaper alternative would be Coloplast strip paste and or Hollister karaya paste.

While I am not qualified to give medical advice I can tell you what has helped me, using Head and Shoulders (unscented) on the peristomal skin, or when it is rather sensitive I use calamine lotion leave it on for a few minutes, then clean, I use Skin-Tac or Osto-Bond as glue if a small separation occurs.

Keep smiling.

Ed Maste

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Wow, man. That was inspiring. I'm sorry they wouldn't give you extra mind-altering stuff in your chemo, though.

Growing up in the Netherlands, I never touched the mind-altering stuff even though it was readily available.
And it seems like I am allergic to morphine; it gave me a splitting headache.
So it looks like I can't even be a junkie. LOL
But I am glad you enjoyed it. I hope others realize that having an ostomy doesn't need to change your lifestyle.
The only thing that has changed since before April 2012 is that I finally stopped lifting heavy stuff after developing a good-sized hernia.
Let me suggest that one shouldn't let a stoma redefine who you are.
Ed

Hello Ed. Thanks for sharing your story, I was captivated by every word and was agreeing with your advice and admiring your attitude. As a result of reading your blog I also read the rogue mag blog and enjoyed that too.
Best wishes
Bill

Hi Ed. I found your story very interesting - and useful! I'd never heard of Ost EZ Vent so I Googled it, found a UK supplier, and have ordered a sample. So an extra thank you for sharing :-)

Dear Rosa, I'm glad it helped you. It's the main reason I wrote the story. It's unfortunate that a lot of people have such a hard time dealing with the subject.

Hello Ed, I too read your story. Thanks for sharing. I agree with Bill, it was, in fact, captivating. The most important part is that you're still here. Happy holidays to you and yours. Be safe always!!! Best wishes, Angelica Marie

Hi Angelicamarie,
I'm glad you enjoyed it. The reason I wrote it and did the interview (see below) is to prove that having an ostomy is just a bit of a nuisance, nothing more, and the only change in my life has been the extra time in the bathroom when I change my appliance.
Cheers, Ed Maste
https://theroguemagblog.wordpress.com/2015/10/22/whats-in-a-bag/

Thanks for responding. If all of us could just look at it like that!!! Happy holidays!!!