Supporting Your Spouse (and Yourself)

by Debra Rooney
(from Ostomy Canada Magazine – Winter 2010: Volume 18, Number 2)

Spouses and significant others of new ostomy patients can often feel frightened, worried or left out of the process. Because bowel and bladder cancers tend to strike later in life, older spouses often find themselves in the position of dealing not only with the emotional and physical aftermath of ostomy surgery but with a loved one’s cancer diagnosis as well. It can seem like all the resources are devoted to the patient and the husband or wife is reduced to being an anxious bystander — wanting to help but unsure how and in need of support themselves. How can you help your partner and take care of yourself at the same time?

ASK QUESTIONS
Don’t be shy about asking the doctors and nurses questions! Make a list of the things you may be worried about such as:
• How soon can my spouse leave hospital?
• Will homecare be available and for how long? How will this be set up and what contact numbers do I need? Is there a charge for homecare?
• Will my spouse need to take any new medications?
• Does my spouse have to follow a special diet now?
• Where is the nearest outlet where I can purchase ostomy supplies?
• What cancer/ostomy support groups are available for my spouse after recovery?
• What support groups are available for ME?

Take the opportunity to ask your questions when you see your spouse’s doctor, and especially their ET nurse. If you can, keep a notebook and write down the answers you get. Compile a list of contact numbers in the same notebook so everything is handy when you need to make or confirm appointments, ie: the doctor’s office, the ET office, homecare or the BC Cancer Agency.

HELPING CARE FOR THE OSTOMY
Ask to be present when the ET nurse begins instructing your spouse on how to apply and change their ostomy products and don’t hesitate to ask to have something explained if you’re puzzled. If you understand the process you can help your spouse later at home if they forget steps or are nervous about handling things alone in the beginning. However, assisting your spouse should NOT become a constant habit. Unless there is a very good reason for it, letting your husband or wife become dependent on you to maintain hygiene is not doing them any favours. There are valid reasons for giving your spouse ongoing assistance such as: eyesight so poor they cannot see the stoma area clearly, hand tremors so severe they cannot apply the pouch or memory impairment that makes it difficult to remember procedures are all reasons for helping your spouse change their appliance.

Fortunately, very few spouses are so dependent on their mate that they would want them to help change their appliance all the time. While your loved one is learning the ropes, offer to be on standby to fetch or hand them something if needed.

Read any ostomy pamplets, books and product advertising you can find or ask for literature on the subject — the more knowlegable you are on the subject, the better.

It’s not unusual to have a few leaks and accidents in the beginning and sometimes some skin irritation will occur. These things can and should be resolved either with practice or consultation with an ET nurse. Chronic skin irritation or leakage is not normal however and your spouse should not be putting up with such discomfort. Make sure they seek help if they’re having problems. Don’t let them try to ‘tough it out’ out of pride or embarrassment.

EMOTIONAL SUPPORT
Your spouse may recover quickly from surgery and resume their previous activities at a surprising rate. Others may take more time to regain confidence — give them time to sort things out. There is no set timetable for when and how new ostomates begin to socialize again or resume previous interests. You are probably the best judge of your spouse’s behaviour and can tell the difference between understandable withdrawal at a bad time or the symptoms of serious depression and unhealthy avoidance. A certain amount of withdrawal is normal as are tears and anger but prolonged behaviours of this sort for weeks or months is a sign that your loved one may need more help moving forward. Encourage them to seek out and speak with other ostomates who have the same type of surgery and if possible, the same diagnosis. Sometimes just seeing another person who has reclaimed their life despite the ostomy is enough to inspire renewed determination.

TAKING CARE OF YOURSELF
This is a stressful time for you, too. With so much going on, don’t forget that you need to look after yourself as well. Make time to get out of the house and have a little ‘you’ time –playing a sport, a little drive somewhere, coffee with the girls (or boys) — in short, whatever you usually did before the health crisis hit. Some spouses exhaust themselves trying to do everything and thinking that they musn’t leave their partner alone for a minute lest they need something. Your spouse needs some ‘alone’ time, too. Give yourself permission to re-charge your batteries from time to time.

Sometimes a spouse may have to be in hospital for a prolonged period of time. If you are spending long hours keeping them company, don’t neglect your own nutrition and need for rest or exercise. Get other family members and friends to share the visiting load and give you a break. And don’t be afraid to ask for favours – people want to help during times of worry so if asked if there is anything someone can do, accept the offer of a lift somewhere, or a meal you don’t have to cook. Or just a friendly ear to listen.

TALK TO OTHERS WHO HAVE BEEN THROUGH IT, TOO
Some UOAC (United OstomyAssociation) chapters across Canada have affiliated SASO groups (Spouses and Significant Others) who may be contacted for support and encouragement. If no SASO group is present in your area, contact the local UOAC main chapter who will put you in touch with a husband or wife who will be happy to listen and share their experiences with you.

Reprinted with permission from Vancouver Ostomy Highlife, Volume 42, Issue 6. Debra Rooney is President of UOA Vancouver BC Chapter.

“Supporting Your Spouse (and Yourself)” first appeared in the Winter 2010 edition of Ostomy Canada. You can become a subscriber to our glossy, full-colour publication of Ostomy Canada by joining Ostomy Canada Society. Find out more here.

Supporting Your Spouse 01

Do You Believe in Angels?

by Ruth Kenney
(from Ostomy Canada Magazine – Winter 2010: Volume 18, Number 2)

“Friends are angels who lift us to our feet when our wings have trouble remembering how to fly.”

Bette Yetman and I have been cruising for many years now and our bond goes beyond friendship into the sisterhood of ostomy living. So when we went on a cruise (shortly after 9/11) in the Caribbean, I lost my equipment between Halifax and Orlando, Florida (possibly when going through numerous checkpoints in Montreal). Foolish me had put all my supplies in my carry-on and I had no extra supplies in my checked luggage. About four or five days into our cruise, I decided it was time for a pouch change. Bette was up in the piano bar with our newfound friend who happened to have a urostomy and I was in a panic in our room. I tried to calm myself by doing deep breathing problem solving, and by directing my scheming mind toward how I could adapt a urostomy pouch to a fecal one.

I told Bette of my dilemma and her reaction was “What are we going to do?” I told her that I was going to approach Vince, our newfound friend, in the morning and ask him what type of pouch he wore. The following morning, Vince informed me that he had a backup for a backup and what he had he would generously share.

Now let me backtrack for a moment. We shared a table with a few very interesting people – a retired psychiatrist, a foreign dignitary, two ladies from Canada, one of whom had also divulged to me that she had a colostomy. So I had her in mind also as I was grappling with my dilemma.

I was almost certain that the infirmary would have nothing on board for me, and indeed I checked into this and my fears were confirmed. They had absolutely nothing on board but said that we might find something in the U.S Virgin Islands on our next port of call.

Vince gave me some of his pouches as well as some skin prep and I proceeded to cut the opening as much as I could (he had a one inch stoma and I have an inch and one-eighth stoma). He wore Active Life with convexity and I wore Coloplast one-piece with convexity. So not too far off except he had a urostomy pouch. So I released the anti-reflux valve in his pouch and proceeded to cut an opening down on the corner of the bottom of his pouch. I tried the Coloplast clamp and it slipped off. The lady from Edmonton had also given me a pouch, wafer and clamp so I tried the Hollister clamp and voila, it remained secure.

So with the help of two ostomates sitting at our table I was able to survive the cruise and not appear to be in great distress.

Do You Believe in Angels 04Do you believe in angels? Well I do. Vince became a dear friend and sent me a poem after the cruise (see poem below).

This is not the end of my story. A few years later, Bette and I went on another cruise. This time I was prepared. As Vince so aptly put it, I had a backup for a backup! I had a carry on (without scissors) and another kit in my suitcase. We embarked on the boat and went to the cafeteria for lunch, as we were famished. Immediately after lunch we proceeded to our cabin, and I being in a hurry going nowhere tripped over a threshold and fell flat on my face, bending my glasses. The only part that really hurt was my ego, as I knew I would wind up with two black eyes for most of the cruise (I had fallen before).

The following morning I decided to go and report my fall at the infirmary and while I was there waiting my turn, a young man with braces on his legs was pacing the floor. He was there before me and he went to the desk and announced that he has an ostomy and that he had a can of Skin Bond cement which the baggage handlers had removed from his luggage (it was a metal can) as they were afraid it was a bomb or something and threw it away. He now needed to replace it. Naturally the nurse told him that she had nothing on board to help him. He then stated that he might have to fly home at the next port of call.

I approached him and offered my services telling him that I may be able to help him and gave him my room number and my name.

The following day there was a note in the slot of our door. I offered him what I wear and explained to him how to apply it and empty it and he managed to stay on board and not need to go home until the cruise was over. However, I strongly recommended that he go see an Enterostomal Therapist and inform himself of the new products on the market as he had been wearing the same equipment since birth.

So do you believe in fate? I was meant to fall and go to the infirmary on that particular morning to help the young man; thus returning my good fortune from a past cruise to another ostomate.

We need not divulge to each person we meet that we have an ostomy however we should not be secretive about it either. Had Vince not divulged to me that he had a urostomy and the other lady not told me that she had a colostomy, the results would have been disastrous.

It is so important for us to share with others our good fortune and indeed it makes us stronger and more prepared to face each day.

TOHELPYOUREMEMBER by Vince
This little old knight, while cruising one night
Became involved in an ostomy plight…
A lady so fair, was one of a pair, in deep and dire despair;
For she needed to share a pouch with a flare,
To match her existing stoma—.
Then along came a spare and with only a stare,
It prevented the proverbial coma!
Her adjustments were few, the pouch worked like new
And all of us loved her aroma.

Ruth Kenney is a member of Ostomy Halifax and of the UOAC Board.

“Do You Believe in Angels?” first appeared in the Winter 2010 edition of Ostomy Canada. You can become a subscriber to our glossy, full-colour publication of Ostomy Canada by joining Ostomy Canada Society. Find out more here.

Do You Believe in Angels 01 Do You Believe in Angels 02 Do You Believe in Angels 03

A Provincial Synopsis of Financial Support for Canadians Living with an Ostomy

Compiled by Kerig Bracken
(from Ostomy Canada Magazine – Summer 2011: Volume 19, Number 1)

[This article was published in 2011 – therefore some information may be outdated]

Alberta Flag Alberta

The AADL (Alberta Aids to Daily Living) typically provides 75% reimbursement for specific ostomy supplies from an approved vendor. Family pays the remaining 25% up to $500 per year. Once the $500 is exceeded, 100% coverage applies. 100% coverage applies if family taxable income is beneath $12,610. Individuals on private insurance plans may not be eligible if their plans cover the expenses.


 

BC Flag British Columbia

The British Columbia government provides support through their Pharmacare Program. This program is means tested into three groups, those earning below $15,000, those earning between $15,000 and $30,000 and those earning above $30,000. Basically it breaks down as follows:
Below$15,000: 70% of costs up to 2% of taxable income. 100% thereafter.
$15,000 to $30,000: 70% of costs, up to 3% of taxable income. 100% thereafter.
Over $30,000: 70% of costs, up to 4% of income. 100% thereafter.
Seniors below $33,000: 75% of costs up to 1.25% of taxable income. 100% thereafter.
Seniors $33,000 to $50,000: 75% of costs up to 2% of taxable income. 100% thereafter.
Seniors over $50,000: 75% of costs up to 3% of taxable income. 100% thereafter.
Certain individuals receive full coverage automatically: those living in long term care, handicapped children living at home, and clients eligible for coverage through mental health centres, palliative care and provincially approved drug plans. Not all items are covered, things like ostomy belts, pouch covers, gauze, tapes, room deodorants fall outside of the plan.


 

Manitoba Flag

 Manitoba

Through MOP (Manitoba Ostomy Program) clients are provided with supplies at no charge. If a client wishes to purchase a specific item not covered by MOP, they pay the full retail price with no reimbursement. A person is registered with the program either at the time of hospital discharge or by contacting an ET Nurse. Once an assessment by an ET Nurse has been completed, decisions are made regarding the type and quantity of supplies. Products then may be ordered on a bi-monthly basis. If a new item is requested, an ET Nurse must order the item the first time to monitor the quantity and combination of supplies being used. Clients who are noted to be using large quantities of supplies are reassessed by the program ET Nurse.


 

New Brunswick Flag

 New Brunswick

Full coverage is provided to those on social assistance, for residents of all ages, through the government’s Ostomy/Incontinence program. Otherwise, no assistance is provided to the general public.


 

Newfoundland Flag

 Newfoundland & Labrador

Social Assistance recipients with a valid Drug Card receive 100% coverage. Eligible Senior Citizens (those on Guaranteed Income Supplement) and with a valid Seniors Drug Card, can apply for reimbursement of 75% through the Ostomy Subsidy Program. The Newfoundlandand Labrador Cancer Society often cover the first purchase of supplies for new ostomates provided the cause of the surgery was cancer. There is no further support.


 

NWT Flag

 Northwest Territories

Seniors over the age of 60, and those registered on social assistance are provided 100% coverage for prescribed supplies. Other individuals may submit a letter from their physician to obtain approval from the Department of Health and Social Services for coverage, should this be granted, full coverage is provided.


 

Nova Scotia Flag

 Nova Scotia

The Health and Community Services Department, through their Pharmacare program, provides coverage to seniors in two ways; with taxable income beneath $18,000 per year with no premium, and for seniors between $18,000 and $24,000 you may be able to pay a lower premium than the full $424. Typically when the registered participant goes to pick up specifically covered supplies at a registered pharmacy, they will pay 33% of the cost to a maximum of $30 per prescription to a maximum payment of $424 per year. After that Pharmacare covers 100% of the costs. Only certain ostomy supplies and products are covered. The covered products are limited to certain brands. There is no coverage of ostomy supplies for the general public.


 

Nunavut Flag Nunavut

All full time residents of Nunavut are covered by the First Nations Inuit Health Branch for 100% of the costs of their ostomy supplies. Much like coverage of medications, a prescription is required. The prescription must be filled at a pharmacy capable of 3rd party billing, which may not be available at all pharmacies.


 

Ontario Flag Ontario

Through the OADP (Ontario Assistive Devices Program), registered participants are eligible to receive $600 per year per permanent stoma. If you have two ostomies, for example, a colostomy and a urostomy, you will receive $1,200 per year. Support is provided on a biannual basis and must be reapplied for every second year. Should participants be receiving social assistance benefits under Ontario Works (OW), Ontario Disability Support Program (OSDP), or Assistance to Children with Severe Disabilities (ACSD), they may be eligible to receive $800 per ostomy.


 

PEI Flag Prince Edward Island

There is no cost for those on social assistance. The Prince Edward Island Cancer Society will cover up to the full costs for new ostomates, provided the patient has a firm cancer diagnosis, this support will be limited to no longer than two years. This support is limited to 24 individuals for any given year. There is no other government support.


 

Quebec Flag Quebec

Through Regie de l’assurance maladie du Quebec, $700 dollars is provided per year, per stoma to all registered participants. Social aid recipients holding a claim slip (issued by the Ministere de l’Emploiet de la Solidarite sociale) can apply for full reimbursement of the costs exceeding$700 with the presentation of detailed receipts.


 

Saskatchewan Flag Saskatchewan

Through SAIL (Saskatchewan Aids to Independent Living) a 50% reimbursement is supplied to all registered participants. Patients must have a qualifying ostomy and have been referred by an enterostomal therapist. Patients are required to pay the full cost of the supplies and submit receipts for reimbursement.


 

Yukon Flag Yukon Territories

Full coverage is provided to Yukon residents who are registered with the Chronic Disease Program. To be enrolled, a physician, or community health nurse (in communities with no resident physician) must apply on behalf of the patient. Once approval has been granted, prescriptions for specific items can be filled at authorized facilities for no cost. Items not covered by the program must be purchased directly by the individual.


 

CONCLUSION

As is plainly evident from the above information; variety and availability of financial support to Canadians living with an ostomy is greatly impacted by where they live in the country. Support levels run the gambit from almost complete coverage, to for all practical terms, next to nothing. We at the UOAC, find this condition to be both deeply disturbing and entirely unsatisfactory. We will continue to work with local chapters, government agencies, allied organizations, and like minded individuals to try to improve the funding levels so that we can better meet the internationally agreed upon Charter of Ostomates’ Rights wherein it is stated “the ostomate shall receive full and impartial information about all relevant supplies and products… and have unrestricted access to a variety of affordable ostomy products”

The United Ostomy Association of Canada, Inc. As compiled by Kerig Bracken, Office Clerk, March 7,2011, Revised March 31 ,2011.

 SOURCES INCLUDE:
• “Alberta Aids to Daily Living”, www.seniors.alberta.ca
• “Fair Pharma Care Plan”, www.health.gov.bc.ca
• “Winnipeg Regional Health Authority, Home Care Program”, www.wrha.mb.ca
• “New Brunswick Health Services, Ostomy/Incontinence Program”, www2.gnb.ca
• “Newfoundland Health & Community Services, Ostomy Subsidy”, www.health.gov.nl.ca
• “Northwest Territories Health & Social Services, Senior Benefits”, http://www.hss.gov.nt.ca/en/services/r%C3%A9gimes-d%E2%80%99assurance-maladie-compl%C3%A9mentaires/extended-health-benefits-seniors%E2%80%99-program
• “Nova Scotia Pharmacare, Drug Formulary”, www.gov.ns.ca
• “Health Canada, First Nations and Aboriginal Health”, www.hc-sc.gc.ca
• “Ontario ADP: Ostomy Supplies”, www.health.gov.on.ca
• “Canadian Cancer Society, PEI. Emergency Assistance Program”, www.cancer.ca
• “Régie de l’assurance maladie. Ostomy Appliances”, www.ramq.gouv.qc.ca
• “Saskatchewan Aids to Independent Living: Ostomy Appliances”, http://www.saskatchewan.ca/residents/health/accessing-health-care-services/health-services-for-people-with-disabilities/sail
• “Yukon Health and Social Services: Chronic Disease Program”, www.2gnb.ca
• “Intestinal Disease Education and Awareness Society (IDEAS)”, www.weneedideas.com
• “Hollister Canada, Reimbursements”, www.hollister.com/canada/
• “ConvaTec Services and Support: Reimbursements”, www.convatec.ca

“A Provincial Synopsis of Financial Support for Canadians Living with an Ostomy” first appeared in the Summer 2011 edition of Ostomy Canada. You can become a subscriber to our glossy, full-colour publication of Ostomy Canada by joining Ostomy Canada Society. Find out more here.

Provincial Synopsis 01 Provincial Synopsis 02

Adventures in Peru & Ecuador (or Six Lessons in South America)

by Debra Rooney
(from Ostomy Canada Magazine – Summer 2011: Volume 19, Number 1)

I’ve travelled a lot since colostomy surgery nine years ago but never anywhere as challenging as South America. I wouldn’t go so far as to say that South America is ostomy unfriendly for it is not, but it’s not a place that an ostomate should take lightly if considering the kind of trip I took. Our itinerary included Machu Picchu in Peru, the cloud forests of Ecuador, the city of Quito, and the amazing archipelago of Galapagos.

PERU
We spent very little time in this lovely country – a scant three days due to a missed connection in Dallas that stole 24 hours from us – but packed in two tours plus an overnight excursion to the world heritage site of Machu Picchu. (I won’t drone on with a travelogue about this astonishing ruin but will just say it is all, and far more, than any postcard could suggest.) The first thing one learns, as an ostomate in such a country, is to bathroom-map. Restaurants do not necessarily have bathrooms and those that do may frown on you asking to use the facilities if you aren’t eating or drinking there. Public restrooms, which are few and sometimes far between, not to mention difficult to locate for tourists with no guide or ability to speak Spanish, almost always require the payment of a few coins to enter. These buy you the toilet and a s-m-a-l-l amount of weapons grade toilet paper.

Lesson One: Carry small coins, carry your own tissue and take note of anything that looks remotely public bathroom-ish. Tip: churches almost always have free bathrooms that will usually be cleaner than public ones. And if you’re in South America it’s a given that you’re going to tour churches.

Lesson Two: Carry water. If it’s being handed out on a tour take as many bottles as you decently can to save for later just in case. Any ileostomate already knows enough to carry water when travelling but I had to learn this the hard way, spending one long bus ride staring longingly at others’ bottled water until our guides handed out water at the next stop. I don’t normally drink a lot of water but the minute it wasn’t readily available I was thirsty.

THE CLOUD FOREST, ECUADOR
We had our own bathrooms in lovely rustic cabins at El Monte nature reserve so no problem there. (And if you really have to empty,  the jungle is a forgiving place to step off the trail.) There was an abundant supply of spring water and excellent food and all in all the place was easy enough for an ostomate to live in. But I got sick. I still have no idea why — everyone else who ate and drank the same as I did was fine. Perhaps it was the relentless heat and humidity, or perhaps the battalions of invisible mosquitoes that assaulted us nightly. Or maybe it was irrigating when my body was telling me “Don’t do this”. The misery passed after 24 hours and QUITE a few bags used up. I was carrying mostly patches and closed-end mini-bags, you see.

Lesson Three: Do not irrigate in a strange country if you don’t feel well. Seriously. You’ll be sorry. You will ride all the way back to Quito lying down in a taxi.

Lesson Four: PACK A LOT OF SUPPLIES. OK, I was prepared but even so, it was a bit worrying to see how fast I could run through closed-end gear when I got sick. I had drainables too but I’d brought them specifically to donate in Quito so it was with alarm I realized that I might have to start using them if this didn’t clear up.

QUITO, ECUADOR
This place was easy. We stayed at a fancy hotel, with a nice modern bathroom plus by now I’d learned that bathrooms were easily found in churches. But you still couldn’t drink (or irrigate with) the tap water.

Lesson Five: Water-sellers are your friend. I use a lot of water to irrigate and became skilled at finding street vendors to sell me the required number of bottles. Tip: check the caps to make sure they aren’t just re-filling old bottles with tap water. This was never a problem in the city but I imagine that in remote locations it might be an issue.(Besides being your safe water supply, water sellers are very patient with rudimentary Spanish.)

GALAPAGOS
Yes, the wildlife really IS as tame as you have heard. We were warned not to touch any of the creatures but that didn’t stop THEM from approaching US. My most memorable encounters included a group of Espinosa mockingbirds who were determined to get at my water bottle. They perched,hopped and lingered most endearingly on my feet, legs, lap and arms, beseeching me all the while to share my water! (Alas tourists are forbidden to give the birds anything – it is feared they will lose their natural ability to find their own water or will pick up contaminants from foreign water – but I was sorely tempted) Another lovely encounter was with a young seal who, curious about our group, flopped amiably up to us and spent long minutes caressing legs  with his whiskers. Again, we were forbidden to touch him but it sure was tempting. I don’t think he would have minded! Throughout all of the protected islands I never saw a scrap of litter or any graffiti. Refreshing.

The Galapagos is where I had to re-think irrigating. We were on a small ship of 70 feet in length, which tossed and rocked with great vigour when underway. When anchored it was reasonably stable but anchoring meant the whole lot of us were scheduled for land tours and sometimes snorkelling twice a day. Irrigating at any time of the day when at anchor meant missing out on something which I was loathe to do, and irrigating at night when underway was out of the question. If the boat was moving one needed two hands at all times just to avoid being thrown against the walls and since one needs two hands to irrigate I had to suspend this practice for eight days. Those of you who do not or cannot irrigate will be amused at my consternation at having to re-orient myself about monitoring, emptying and changing ostomy gear. I got the hang of it quickly — I did manage myself this way during the first year after all — but dear me, did I run through supplies!(even the one-piece drainables did not last long in that environment) I worriedly counted down the dwindling supply that would be left to donate.

Lesson Six: Ya gotta be flexible. So I couldn’t irrigate. So what. Adapt.

FOOD IN SOUTH AMERICA
Many of us must be vigilant about what we eat due to the danger of blockages. I found that there were enough safe choices in restaurants for those who must take care but an ileostomate might encounter problems if touring Galapagos. I can only speak for our ship, but there was no menu selection and everyone was served the same fare, which tended to be vegetable and fruit – heavy with a surprising lack of starches. It was decidedly un-North American and very healthy but I wondered how an ileostomate might manage such meals. I did notice one fellow traveller who avoided a lot of the dishes and simply assumed at the time that he didn’t like strange vegetables. Perhaps he had an ileostomy!! I know he left the table hungry a few times. But for those of you with no food worries, such a ship would be a most interesting food experience. (Look up ‘tree tomato’ sometime.) Oh yes, and corn is a major staple in South America. All of your corn needs will be met.

DONATING SUPPLIES
It was my intention from the get-go to donate what drainable and closed-end bags I had left before leaving Ecuador for home. Astrid Graham of FOW had advised me to give them to any hospital I could find in Quito from where they might find their way into the hands of those who needed them most. This proved to be more difficult than expected due to the language barrier. What’s the word for hospital? How to explain what our mission was, once there? A solution was found, entirely by chance. This is how it came about:

We had also brought school supplies to donate and set out one afternoon in Quito to find a school. It quickly became apparent that we had little idea of where to go, so I decided to ask a passing nun where a Catholic school might be. Much sign language and the words “escuela por niños” later she happily grasped the concept and led us to a school near the main square. Some more translating of our mission was required and we were then led to the outer office of Mother Superior herself! Mother Superior, alas, was in conference with another petitioner and after giving us a suspicious glare through the two-way window to her office, continued to debate at length with her guest. We waited. And waited. It became apparent after 30 minutes that we weren’t high on Mother S’s list of priorities so we left, mightily affronted, to seek more receptive waters. Another hunt ensued, this time for a hospital. We grew weary and stopped to rest at an outdoor café. Suddenly I spotted a large group of little kids who appeared to be in some sort of outdoor daycare. A tall woman who looked like she might speak English appeared to be in charge so I approached her with our offer of crayons, paper, chalk and the like. Her name was Emma Barthles, and she was half Canadian! Emma Barthles and her organization, Desarrollo Social y Hábitat, were happy to take our school supplies and best of all, when I asked where I might find a hospital (one seizes up on the chance to get as much information as possible when encountering a fluent English-speaker) said she partnered with the Director of the local health centre, Unidad Municipal de Salud Centro. They would see that our donation got to the right place. So the deed was done, and done right and I thank you again, Emma B. for helping.

Emma’s group, Desarrollo Social y Hábitat (DS&H), which was founded in April 2009, is an Ecuadorian organization which focuses on empowering children and adolescents at risk, as well as their families, to restore their rights. Following an initial project in 2008, Viajando con Niños, DS&H launched Cuéntamelo Todo in June 2009 in partnership with Fey Alegría, the largest popular education NGO in Latin America. If you want to learn more about Emma’s group, check out their blog: www.dsh-ecuador.blogspot.com

IMMUNIZATIONS
Besides the obvious precautions ostomates should take when travelling I’d strongly recommend that if planning a trip to either Ecuador or Peru you visit a local travel clinic for specific advice on what immunizations to get. These will vary according to regions visited but you can count on needing hepatitis, tetanus and yellow fever. Some areas also advise polio vaccines (we had to get that one) and/or malaria medication. You can probably skip the malaria one if you aren’t heading to the Amazon or other water and jungle areas.

I’d personally recommend the altitude medication Acetazolamide (Diamox) which I took on the clinic’s suggestion. We’d heard scare stories about folks becoming ill with headaches and nausea at high altitude but never suffered any of these ill effects. I noticed I got winded easily if climbing stairs or carrying heavy luggage, but otherwise I had no problems with altitude while taking this drug.

A set of immunizations of this type will run you around two to three hundred dollars depending on the areas you visit. None of my travel immunizations were covered by Blue Cross but they were well worth it!

Debra Rooney is President of UOA Vancouver BC Chapter. Reprinted with permission from Vancouver Ostomy High Life Volume 42, issue 5, Sept-Oct 2010.

“Adventures in Peru and Ecuador” first appeared in the Summer 2011 edition of Ostomy Canada. You can become a subscriber to our glossy, full-colour publication of Ostomy Canada by joining Ostomy Canada Society. Find out more here.

Adventures in Peru and Ecuador 01Adventures in Peru and Ecuador 02 Adventures in Peru and Ecuador 03 Adventures in Peru and Ecuador 04

Costco, Lavender, Polyester, and the Auto-Flushing Toilet

by Katherine Morgan
(from Ostomy Canada Magazine – Summer 2012: Volume 20, Number 1)

Like many, I’m buzzing about my normal routine, we all know the deal… Sweep here, dust there, put a load of clothes in the wash as I’m dashing out the door, stop at the grocery store for a few things, run into the local pet store for fish food (yeah, my Koi are SUPER spoiled), quick grab of a snack at the not so good but oh so quick fast food drive up window, mad dash into the Post Office to drop off a couple of parcels, on to City Hall to stand in line forever for a building permit for our patio cover and then, ahhhh, at last, onto my final stop, Costco (truly, my second home).

It was as I pulled into the parking lot of Costco that I realized that not so tasty snack from the drive-up window was now pooching out my ostomy pouch like the Goodyear blimp. We’ve all been there, waited just a fraction too long to empty and now we have something that looks like a third breast sitting squarely on our abdomen. Not only is this new ‘addition’ similar in size to something off of the top half of Dolly Parton, it is about as hard as cement that has been cured for 25 years. Who knew that poop could stretch the limits of an ostomy pouch to something equal to 15 g-forces. Yes indeed, the ol’ bag was about to blow!

For those of you who aren’t familiar with Costco, before they will even let you sniff the very air inside that building you must first produce the guarded membership card. And to those who aren’t ‘purse organizationally challenged’ this would not be a difficult thing… To others, such as myself, it’s like asking us to find a needle in a haystack. I believe the conversation went something like this… “Yes, Mr. Costco man, I realize that I must produce my membership card… Yes, I realize that I can’t saunter about the store without my membership card or a pass from the membership desk… YES, Mr. Costco man, I did receive my coupon book… YES, Mr. Costco man, I know full well that you won’t be open on Labor Day… Look, Mr. Costco man, put a sock in it or you’re going to have a mess on the floor in front of you that, quite possibly, would bring Attila the Hun to his knees… OUT OF MY WAY, MAN!” And off I ran to the ladies room.

Let me just interject something here… why, in the name of all that is sacred, do stores insist on putting the restrooms in the furthest corner of the building? Move those puppies up front so the public at large is not exposed to the many ‘pee-pee dances’ we see as folks (myself included) attempt to make it across the store without leaving a trail that Hansel and Gretel would be ashamed to follow.

Ahh, I digress, back to my adventure. Steps quick but close, determination carved deep in my brow, I make my way to the ladies room, bypass the yellow barrier tape that the cleaning lady has put up and into a stall I rush. Do ya’ll realize that when you have a rock hard Triple E Dolly Parton breast on your tummy that it is a bit difficult to slide your jeans down without ripping that thing into pieces? Well, it can be done and given enough incentive (the poop collection is growing!!) those jeans can be at your knees before Mr. Costco man can say “Membership card please ma’am”.

I’m a ‘stander’ when I empty my pouch (we’ll have to have a discussion on standing versus sitting someday), clip in hand, pouch gripped tightly to control the force of Hurricane Ostomy as he tries to exit my pouch, facing the self flushing toilet, feet spread just enough to avoid any possible splash as the lightning speed of waste hits the water… all systems are go, let ‘er rip! Ahhhh. The relief I felt as that pouch emptied from a good two-gallon capacity down to less than an ounce was paramount to the birth of my son. But quickly, ever so quickly, that feeling of bliss was instantly erased as I realized that my pouch clip that had been tucked not so securely in between my fingers is now floating in that rather overfull toilet bowl. Now, don’t tell me no one else has done that, I can’t be the only klutz with an ostomy. It is here I have to admit that the thought of reaching in and snagging that little plastic jewel crossed my mind for a split second but just as quickly as that thought crossed my mind, the automatic flusher on the toilet kicked in and, SWOOOSH, down my little retention dam went, onto sewer headquarters.

You know that deer in the headlights, ‘oh crap’ look, well, yes, indeed, within a flash I was garnering that very look. Hmmm, what to do… Now I’m not one to carry an extra clip in my purse when I’m out running quick errands (lesson learned now!) so onto my less than organized shoulder bag in hopes of finding a rubber band. Wallet, check, debit card, check, Costco membership card, check (where was this thing hiding not three minutes ago?), pens, check, lipstick minus the cap, gross but check, half a pack of brittle gum, check, three sticky jelly beans, check, $47.53 in coin change, check… Rubber-band, NO check. Okay, plan B… PANIC! Okay, Katherine, think…

At this point I figure there is no use in staying in there until the cavalry comes as the cavalry doesn’t even know I need backup! Ahhh, cell phone! Call the everhelpful membership desk at Costco, speak to a rep and briefly explain that I’m in their restroom and I need a rubber band. Let’s just say this right now… BWAHAHAHAHA! Yeah, right!!

If I recall correctly, that special little conversation went something like this: Costco employee: “Costco, may I help you?”… “Yes, I am in your store, in fact, I’m in your restroom and I need a little help…”

Costco employee interrupts, “You’re where??” “In your restroom… in the store… you know, the restroom that’s way the hell ACROSS the store, as far away from the membership desk as is humanly possible!” Costco employee: “Oh… Okay… And you need help? Are you stuck in a stall? We had a lady get stuck in one of the stalls last week… ramble, ramble, … blah, blah, … Jiggle the hinge side of the door… ramble, ramble, …” “NO, I’m not stuck in a stall, but I am in one of the stalls and I have a bit of a medical situation”… Panic interruption from Costco rep… “Do you need an ambulance… Carol, call 911, we have a woman in the restroom who’s in trouble, HURRY!!…” “WAIT!! WAIT!! Do NOT call 911!! I repeat, DO NOT call 911!! Don’t let ‘Carol’ call 911 either!! I just need a rubber band, not half the city’s emergency crew running full code across town to your store!!” Costco employee: “Ohhh. Are you sure you don’t need an ambulance? Carol is dialing now…” “Sweetheart… Ladybug…, I think I would know if I needed an ambulance at this point in time and, trust me, I DON’T! What I need is a RUBBER BAND! You know, the stretchy thing that goes around newspapers?” Costco employee: “Ohhhh, okay… We don’t get a newspaper here at the store… did you not get your monthly coupons?” “GRRRR… Ummm, do you also work at the front door?” Costco employee: “No ma’am, but I worked in the bakery… will a bread tie work? pssst, Carol, hand me the walkie-talkie.” “For the love of Mary, would you please find a rubber band, walk across the store to the restroom, I’m in the handicap stall… I’ll be waiting for you… CLEAR?” Costco employee: “Ohhhh, yeah, okay… Carol, did you get the ambulance cancelled? I think there is someone on drugs in the ladies restroom, find the walkie talkie, call security!”

As I was moving my valued cell phone from my ear the final words I heard from that somewhat misguided Costco employee were “Yeah, she’s wanting a rubber band, she’s really agitated, I think she’s doing drugs in there!”

And now I have to say God Bless older women who have organized purses and listen in on the conversations of others while in public restrooms. As I sit like ‘The Thinker’, elbows on my knees, banging my head with my fists, I see this little, timid well-aged hand reach under the stall door with a rubber band, and in the tiniest of voices I hear, “Here you go, deary.” At that moment I had found my new hero! Delicately taking that little stretchy object from her, I quickly secured my now deflated pouch, up go the jeans and out of the stall I rush. And there I saw her, she was all of 4’9”, 90 pounds soaking wet and toting a hand bag the size of a small mini storage. She was a vision in lavender polyester, silver hair, glasses the size of dinner plates and ‘spunk’ written all over her; all she needed was a tiara and a cape and I know she would have been able to conquer the world! She was absolutely precious! We exchanged pleasantries, I offered to explain my need for a rubber band, she offered me a hanky along with a peppermint, we bonded instantly. It was a friendship that would last a lifetime even though we both knew we would, no doubt, never see each other again. We washed and dried our hands, tossing the tissue over our shoulders like pro basketball players and then walked to the exit door of the restroom… It was in those next moments that I realized that this precious little lavender clad lady was one of the most spirited people I had ever met. As we approached the exit door of the restroom we were met face to face with a Costco employee, a security guard, Mr. Costco man from the front door and a couple of burly males who looked like they could work as bouncers at the toughest joint in town. My heart stopped, I was going to jail, the local law was going to be there any moment! I wanted to shout: SWEET HEAVEN, ALL I WANTED WAS A RUBBER BAND! I DON’T LOOK GOOD IN STRIPES!

And now, my friends, this is where we learn from our elders. As bold and in your face as a person can get while still maintaining dignity, my new little lavender lady sauntered right up to Mr. Costco man from the front door, shifting her mini storage size hand bag from one hand to the other, placing her free hand on her hip like Mae West and tilting her head ever so gently to the right as she looked up into his eyes, her words were short and concise, she wasted no energy, her mere presence commanded their attention… all eyes were on her, including mine!

“Sir… Your auto flush toilet just sucked the Depends right off my hiney. Now, unless you want to put those hands of yours to work on operating a mop, I suggest you get out of our way, we have diapers to purchase!” And with that she laced her arm through mine, stuck her chin out a good three inches and proclaimed, “Dear, let’s go shopping!”

Yes, it was a day that will stay with me forever. As it turned out, this sweet little grandma was sporting a 40 plus year old colostomy. She was of that age where, as she so eloquently put it, “Too damn many kids, I leak like a sieve.” While she was taking care of business in the ladies room she loosened her diaper and perched on the toilet to tend to a flange issue with her colostomy. When she stood up the diaper didn’t, falling partly into the toilet bowl. Before she could grasp the diaper the auto flush kicked in and sucked that thing right down!

For a brief moment it crossed my mind that I was now strolling through Costco with an 80 plus year old women who had nary a stitch on under her little lavender polyester suit! And in the next moment I realized that I couldn’t have been more blessed, I couldn’t have been any prouder than I was at that very moment. I was in the company of grace, charm and a woman who had probably experienced more in her life than most of us could possibly imagine. She had buried two of her children, a grandchild, her parents, siblings and more friends than she could count. She had endured what would have been considered barbaric surgery by today’s standards but she not once uttered a word of remorse. She walked with confidence, she commanded respect, she had a twinkle in her eye that still melted the heart of her sweetheart of 65 years… And she was not the least little bit taken aback by her ostomy. She oozed that amazing comfort that well-worn blankets give us. As she briefly shared the ‘coming’ of her ostomy I realized that God truly has a plan and purpose for all of us and He had opted to share this amazing woman with me in my time of need. Granted, my life was not in danger as I watched my pouch clip float down that drain, I was not in harm’s way, my universe was not going to be shifted off its axis simply because I lost grip of the clip… life WAS going to go on. But my life was indeed changed. I had the amazing pleasure of sharing a brief moment with a woman who I can only dream of becoming.

So, the next time you are rushing about in your busy world, stop for a moment, listen to the world around you, take in the beauty of a friendship that you might otherwise brush off as a passing conversation, carry yourself with pride and dignity, wear lavender, carry rubber bands in a pocket, don’t be afraid to reach out to someone. And above all else, remember to count your blessings, open your eyes and live! Live loud! And should you happen upon a petite little lady sporting a lavender polyester suit, a handbag as big as the whole outdoors, and showing no fear in the face of a self flushing toilet, give her a hug from me. Mrs. Blankenship, you ARE da bomb!

Katherine lives in Albuquerque, New Mexico

“Costco, Lavender, Polyester, and the Auto-Flushing Toilet” first appeared in the Summer 2012 edition of Ostomy Canada. You can become a subscriber to our glossy, full-colour publication of Ostomy Canada by joining Ostomy Canada Society. Find out more here.

Costco, Lavender, Polyester and 01Costco, Lavender, Polyester and 02

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