Click the link below for the story.
Hi I have had mine for 8 years but in the past 3 weeks it is putting out more than u can imagine. The pain comes and goes drinking lots. I have no large bowel left and not much of small. Had to have rectum removes as well. I have a disease called DIGITS not yet in medical books. My doctor retired last year and i see new one in Dec. I can’t handle this much more. Thanks
Do not handle this issue until December, it is very important to make stoma health care a priority. Contact an Enterostomal Therapy (ET nurse), as soon as possible. Go to the Support button on the bar above on this Ostomy Canada Society website to find an ET nurse, click on Support and the drop down menu will provide a list of information, locate the Find An ET Nurse, click on this and follow the instructions. (Find a NSWOC).
If there is not an ET Nurse in your area go to NSWOCC to assist you in finding the appropriate ET professional for you.
Our friends over at Nurses Specialized In Wound, Ostomy And Continence Canada [NSWOCC] (formerly called The Canadian Association for Enterostomal Therapy (CAET)) have renamed their handy look-up page on their website. It was formerly called “Find An ET Nurse” and is now called “Find a NSWOC“. Click on the image to the left or link here to go to their site.
by Angie Schickerowski
(from Ostomy Canada Magazine – Summer 2012: Volume 20, Number 1)
+ 52 cities in 17 countries
+ 4 overnight bus rides
+ 1 night sleeping on a cold airport floor
+ 1 private island
+ 3 wonders of the world
The HONEYMOON of a LIFETIME
My husband Mike and I feel so fortunate that we were able to live this once in a lifetime experience. Early on in our planning it acquired the nickname of a Full Moon because it just wasn’t your ordinary honeymoon. It took an insane amount of planning, many long hours and hard work to save our pretty pennies, and the faith in our ability to not kill each other after spending 24 hours a day together for six months in a row.
It’s an intimidating experience – packing up and storing all of your personal belongings, renting your house out to an old work colleague, and trying to organize everything you need for six months of travel on the road into two backpacks. Intimidating and exhilarating all at the same time. My husband and I are born planners. Or organizing geeks – whatever you want to call it. I get excited about Excel spreadsheets the same way some women get excited about shoe shopping.
Having an ostomy added an extra element to planning such an extensive trip. One of the more difficult parts of preparing and organizing for a six month trip around the world was figuring out how much and what I would need for ostomy supplies. It was coming up with a plan of what we would do should I encounter a medical problem on the road, in the middle of a non-English speaking country. It was figuring out a plan of action in case our luggage was lost or stolen and I found myself suddenly without any supplies. It was trying to imagine what could happen going through airport security in any one of these foreign countries.
Like I said, it was a little intimidating. A little scary, thinking of all of the ‘whatifs’. But the truth is, the what-ifs are there whether or not I had an ostomy. The fear of losing our luggage, the worries about becoming sick and needing medical attention in a foreign country, and dealing with language barriers – all of these concerns exist regardless of any medical condition I may or may not have.
My husband has his own medical challenge. Born with congenital nystagmus, a condition of involuntary eye movement that results in limited vision, he has never let anything stand in his way of accomplishing his goals and ambitions. His eyesight technically falls under the label of ‘legally blind’- he can’t obtain a driver’s license, and can’t read the menu board at McDonalds. When he was a young child, his mother was told that he would likely never attend a mainstream school, participate in sports or hold down a ‘real job’. He would be living off of disability instead. Fighting against these odds, he graduated from high school, attended college, was captain of the high school football team, won provincials in high school wrestling, and has since become an extremely successful businessman.
He inspires me. It is too easy to become weighed down by the challenges of a medical condition, whatever that condition may be. Our dream to travel the world together came to life early on in our relationship. I was still sick with colitis at that time, and we discussed the challenges we might face between his visual impairment, and my chronic illness. And we started saving our pretty pennies. The question of whether or not we would even be able to leave home and travel for six months around the world didn’t exist. We had made up our minds to do something and immediately the wheels were set in motion.
During the three years of planning and banking our travel monies, we moved in together, I battled a severe flare-up of colitis for eight months, Mike proposed, I underwent a total colectomy and got an ileostomy, we bought our dream house, we got married, and finally the time came when we were ready to set off on our world travels.
The beginning plans of a trip around the world were overwhelming. In the grand scheme of things, six months isn’t a very long time to see all of the things that we wanted to see. We had to really trim down our list of potential destinations and begin to focus on a logical plan of attack. It is also difficult finding a time when life slows down enough to be able to spend that much time away from home – weddings, anniversaries, babies being born – there would always be an excuse as to why we had to put off our trip a little bit longer.
But as our travel plans began unfolding, a bunch of puzzle pieces fell into place. We realized that it would actually be cheaper to fly home after travelling through Central and South America, and then depart for Southeast Asia via Vancouver. So our trip got split into two parts, with a three week break in the middle to spend some time at home, visiting family, taking in our niece’s wedding, my parents’ 50th wedding anniversary, and celebrating our 1st wedding anniversary! After soaking up family time, and restocking supplies, we would hit the road again, this time travelling through Southeast Asia for three months before coming home for good.
This plan with the break in the middle really helped with planning how many ostomy supplies to bring. I feel rather fortunate as I’m usually able to go four or five days between bag changes, but on a trip like this I doubled that and made sure that we had enough supplies on us just in case I had to change it as often as every two days. I divided supplies into ‘packages’ of ten – ten flanges, ten bags, ten cloths, ten disposal bags, and one tube of ostomy paste, all stuffed together in large Ziploc bags. Then we split these bags amongst our backpacks. Each of us carried one large backpack, and one small backpack, and each of these bags had some supplies in it just in case we were to ever lose some luggage or have it stolen.
We felt pretty prepared having this all figured out, but we still needed a backup plan to our backup plan. I chose a good friend of mine who is an expert at sending parcels worldwide via Fed-Ex or Purolator, and gave her an extra stash of these Ziploc packets stuffed with supplies. The plan was to get in touch with her should we ever need to restock and she could send a parcel to the hotel that we were staying at.
With ‘what-ifs’ still floating through my head, I was able to get in touch with someone through Hollister International and found out details about their suppliers on the global scale. I felt confident that if I ever needed to access more supplies in any of these foreign countries, I could easily communicate with a local Hollister representative who would be able to help me out.
Supplies were one concern. Getting sick while on the road was another. Been there – done that – don’t really want to do it again. After having had to utilize travel medical insurance once in the past, I know how to read the fine print. I made sure we had a really good and extensive policy before heading out on the road.
However having insurance to cover you is one thing. Knowing where to seek out medical attention is another. I am blessed to have an extremely technologically savvy hubby. He brought along a GPS with us on the trip, and better than that: prior to leaving, Mike downloaded maps of all of the countries we planned on visiting. In each city that we intended on going to he plotted the Canadian Embassy, two or three hotels that were our top picks, and most importantly the English-speaking hospitals. We felt confident that we would be able to seek the proper medical attention should we ever run into a problem on our travels.
The language barriers? That was something else to think about, but knowing that we would never be able to become fluent in nine different languages before we left, we covered our bases the best that we could. We picked up a couple of different travelsized dictionaries with basic language skills that we could reference should we ever need to. The Spanish/English dictionary became a regular read for us and we were quite proud by the end of our first three months when we were fairly fluent in basic conversational Spanish.
In each of my ostomy supply packets, I also carried with me the small instruction manual that comes with Hollister supplies – it has 23 languages on it, including eight of the nine different languages that we would be running into on our travels. My plan was to have it accessible should I ever encounter a problem going through airport security, thinking that between the diagrams and the other languages, it could be my own personal interpreter.
On our trip we went through airport security eighteen times, and I was only stopped once when somebody questioned the bulge underneath my shirt. The unfortunate thing was that we were in the middle of China where zero English was spoken and respect for one’s privacy seemed to be non-existent. Even so, it wasn’t that terrible of an experience. We were leaving Guangzhou, China, flying to Hanoi, Vietnam, and the security officer was quite curious about my ostomy bag. As she should be. I have no problem whatsoever with them asking questions. It’s a bag of fluid attached to my body after all – I actually get comfort from knowing that they’re curious as to why someone is boarding a plane with a bag of fluid attached to their body! The security officer felt it, as she was doing a thorough ‘pat-down’ after I passed through the metal detector. They thoroughly patted everybody – I didn’t feel too special. After noticing the bulge, she slowly lifted up my shirt a little to reveal the bag, and I said the word ‘medical’ a couple of times, hoping that she understood a little English. I was ready to ask Mike to pull out my multi-lingual information sheet when she shocked the heck out of me by giving my stoma a quick but sharp poke, then nodded her head and let me pass through. I have to admit, that was a little strange. Not that it hurt, but nobody’s stoma should ever be poked. I think that’s a rule of thumb.
Medical problems? I didn’t run into anything serious. Two partial blockages. And two important lessons learned. Lesson One: Chewy seafood such as calamari doesn’t agree with me that well. Lesson Two: When eating extremely spicy food in Thailand, make sure your dish does not have large nuts in it. You see, here’s the thing: The spicier the food, the less I am able to focus on thoroughly chewing my food. I gulp it down in a hurry, in order to chase it with cold beer as an attempt to douse the flames that feel as if they are shooting out of my mouth. In doing this, the nuts don’t get chewed and the pain the next day is unimaginable. Luckily after a few excruciating hours of pain, the blockage passed on its own and I was able to avoid visiting a foreign hospital.
We travelled throughout some of the hottest weather imaginable. During a particularly hot day on the beach in Panama, we watched the thermometer climb to 41 degrees Celsius! And we didn’t melt! I feel very fortunate that I didn’t run into problems with the adhesive on my ostomy pouches. On average I had to change it every four days, and on days when we had a long hike ahead of us, or when I knew I’d be spending a lot of time in the water, I would be proactive and change it a day or two early if necessary.
We learned tricks of the trade for those days when we had long hikes, or ten hour bus rides with limited bathroom breaks, or we were visiting a venue that had restricted bathroom access. A jar of peanut butter became our best friend, and I would load up on PB sandwiches for breakfast before we started our day. It’s something that works for me at least – the peanut butter really thickens things up and slows down my ostomy output. Thank goodness.
Bathroom adventures? They are aplenty… Wow! There should be an Olympic event that incorporates emptying your ostomy bag in some of these terrifyingly disgusting bathroom conditions. Trying to not dump the contents of my bag all over myself, in the dark, while balancing on one foot in the middle of a mud floor, hovering over top of a hole dug in the earth, trying to ignore what I’m fairly certain were the glowing eyes of some rodent in the corner of the bathroom – that’s the worst of it. Becoming proficient at squat toilets throughout China, I felt like I should have earned a medal. Discovering that bathrooms tinier than cramped airplane bathrooms actually do exist on the overnight buses throughout Peru – mind boggling. And then conquering the challenge of this bathroom that’s roughly a quarter the size of its airplane counterpart, and emptying my ostomy bag while the bus bumps and jostles along a windy mountain road – the accomplishment was surprisingly gratifying.
The challenges of our trip? Currency conversions… In Vietnam, one Canadian dollar equals roughly 17,500 Vietnamese dong. Do you have any idea how confusing it is trying to convert those numbers in your head while a taxi driver is doing his best to rip you off? Remembering the different names for all of the currencies while travelling from one country to the next was another challenge. One early morning we were boarding a bus in Cahuita, Costa Rica heading over the border to Bocas del Toro, Panama. We had gotten rid of all of our local Costa Rican currency (the colone), and we were trying to pay for our bus tickets in American dollars, which is pretty much universal currency. The bus driver was having difficulties giving us change and kept asking if we had any of the local currency (the colone). Mike kept answering him by saying “no tengo camarones” – he was mistakenly calling the currency ‘camarones’ instead of ‘colones’. So to translate what he was telling the bus driver, “I have no shrimp.” No wonder the bus driver kept looking at us like we were crazy!
Other challenges? We were forced to learn how to become less trusting. In many of the countries we visited, people make their livings by scamming tourists. It was so natural for us to think that people were genuinely trying to help us out, when really they were just trying to make a quick buck. Although it was disheartening at first, after a while you just get used to it.
The highlights of our trip? Where to begin? For Mike it was definitely diving – seeing amazing underwater life in Honduras, Costa Rica, Panama, Vietnam, Thailand and Malaysia. Mike rented a private island for us to celebrate my 30th birthday – that was unforgettable. About the size of a football field, the island was secluded in the middle of the ocean off the coast of Honduras, and was jaw-dropping beautiful. Seeing Machu Picchu and climbing to the top of Waynu Picchu was amazing. Singing karaoke in Vietnam. Walking along the Great Wall of China. Finding a little slice of paradise in Khao Lak, Thailand and completely unplugging for a week of utter relaxation. Taking personal Thai cooking lessons from a restaurant owner that we became good friends with. Visiting Angkor Wat, riding an elephant, trekking to a remote waterfall. The memories are endless.
The most common question that we were asked after returning home from our Full Moon was “what was your favourite place?” Mike always had the same answer, “Home.” It was an absolutely incredible journey, but was it ever nice to be home again, surrounded by family and friends. Seeing the world can really make you appreciate the lives we have back in Canada. I would have to say that one of the most gratifying outcomes of our extensive trip was seeing how easy it was to travel around the world, with or without an ostomy. One year after finishing this trip we find ourselves with a six year old foster daughter and a six month old baby, and we know full well that as soon as we can save some pretty pennies again, we’ll be bringing our entourage along with us to show them the beauty of the rest of the world, and create some more amazing memories together.
Angie Schickerowski is a member of the Calgary Ostomy Society
“Our Full Moon” 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.
by Angie Schickerowski
(from Ostomy Canada Magazine – Winter 2013: Volume 21, Number 2)
The power of kindness. It’s overwhelming how the simple act of a stranger helping you out in an extremely embarrassing and awkward situation can impact your life so greatly. And it almost, emphasis on ‘almost’, makes up for the ignorance and poor attitudes of others who make you feel even more embarrassed and ashamed in those situations. In the four years of having an ostomy, I have had trouble with the clip closure on my ostomy pouch only four times. Make that five now. It doesn’t seem like a huge number, but each of those memories is vividly ingrained in my mind. I think anyone who’s been in one of ‘those’ situations can identify whole heartedly. It was an average day for me as a Mom of two and seven months p regnant with the third. Our daughter was at school, and the little mister and myself were at the pool, taking part in one of those mom and tot swimming lessons. You know… the ones where a group of one and two year olds splash around in the water as the moms all sing “ I Had A Tiny Turtle” in unison for the twenty-seventh time.
I love swimming and I especially love spending time in the water with our kids. Being seven months pregnant and starting to feel like a walrus, I also really enjoyed the weightlessness of being in the water. Having an ostomy has never held me back from enjoying time in the pool. Ahhh… Life was good.
The class ended, the kids got their ‘report cards’ and our little guy Lincoln got a high five for passing the ‘Duck’ level of Swim Kids. In the change room, we got our stuff all together and I wrangled the squirmy little dude into a change room so that we could change out of our swimsuits and back into our clothes. As I was pulling my swimsuit bottoms down, and trying to stop the little escape artist from crawling under the door, the clip o f my ostomy pouch got caught on the fabric of my swimsuit, came undone, and WHOOSH, the entire contents of my bag went crashing to the floor, splashing all over the floor, our towels, and my son.
“ NOOOO… ” I cried out, along with a word I’m not proud to have said out loud in front of a bunch of children.
I grabbed Lincoln and pulled him off the ground as he started to try and play in the mess that was all over the floor. My brain started running in circles, trying to think of how to even tackle this mess. I could feel the panic starting to rise up in my throat, and then I hear this from the other side of the change room: “Oh my GOD! Disgusting! Madeline get over here this instant! NO! NOW! We’ll go to the family change room…” Followed by the quick rustle-rustle as another mom and her kid hurry to pull their stuff out of a locker and rush out the door. All of this happened in a matter of seconds, and the tears started pouring down my face. Lincoln was trying to scramble out of my arms, and as shame and embarrassment overcame me, I really was at a loss as to what to do next.
Then I heard another voice. “Excuse me, are you okay? Can I help?”
I was full on sobbing by this time. My emotions tend to run on the more sensitive side of things to begin with: add on the hormones of pregnancy, and you’ll find my picture in the dictionary under the definition of ‘basket case’.
“I don’t know,” I squeaked out. “I… I… I need to give my son a shower… and I… I don’t know. I need to clean up this mess. It’s hard to explain…”
I heard her quietly murmur something to her kids and then she was back at the door to our change room. “Why don’t you pass your little one to me?” she asked, “I can give him a shower.” “No, that’s okay. He’s… Um, he’s covered…” I was really struggling with how to explain this. He’s covered in my poop? Is that really something I want to say out loud? Lincoln is crying by this time. He doesn’t like that I’m crying, but he also REALLY hates the fact that I’m not letting him down. “Listen, it’s okay. Don’t worry. I’ve got three boys. They’ve been covered in all sorts of messes before. Let me take him to the shower quickly if that will help you out at all?” This lady is pretty much a complete stranger. We’ve attended six mom andbaby swim lessons together. We’ve sung the stupid turtle song a hundred times together. But I don’t know her name. We’ve never made small talk. And here she is offering me what feels like the greatest gift of kindness in the world. “Okay…” I sob, and use my swimsuit to clean a little bit off Lincoln before opening the door a crack to pass him through. I hear her chattering away to him as she rinses him off in the shower, and he’s squealing with glee because he’s a little fish. As I use the already dirty towel to clean up some of the mess on the floor and off of my feet, I hear her come back to the locker area with Lincoln and instruct her four year old to share some of his cars with his new friend.
Miraculously, the downpour from my ostomy bag missed me almost entirely. And thankfully didn’t hit our bag with clean clothes in it at all. By this time I was able to finish getting myself dried off and changed back into my clothes. As I opened the door, I saw my Angel In Shining Armour expertly putting a diaper onto my son who was twisting and turning on the change table in an attempt to get back to the little race track of cars that had been set up on the benches. His two new friends were still in their swimsuits and making expert car noises as they raced up and down the ‘track’. “ He seems to be the same size as Aiden,” she smiled at me, “so I just used one of our diapers.” “Thank you so much,” I started to say as tears welled up in my eyes, “ I don’t know…” As my sentence trailed off and the lump rose up again in my throat, she waved her hand in the air emphatically, “It’s seriously nothing,” she told me, “I’ve had strangers help me out before in some pretty sticky situations. Once, I had our van running, as I ran into the post office to get the mail. When I came back out, Lucas here (she points at the older boy) had undone his seatbelt, locked the doors and was in the driver’s seat trying his best to pull the gearshift out of park. It was awful! But the guy in the car next to me, who I’m pretty sure learned his skills in a shady way, was able to get my door unlocked in less than a minute. Thank God! It was one of those ‘I’m the worst mother in the world’ moments for sure.” Her rambling story put me at ease and I was able to smile as Lincoln started driving the car up and down my leg. “Hardly the worst mom in the world,” I told her, “and it is definitely something. Not NOTHING! I am so grateful for your help.”
“I need to get some janitor supplies or something to finish cleaning up in there,” I continued as I lifted Lincoln up to go out and ask a staff member for help. “They already know,” she told me, “they said they can just spray down the floor and pour on some bleach once we’re out of here. There are no lessons for the next hour so no one will be in here.” I have no idea where she found the time to talk to somebody about this. As she wrestles her one son away from the cars to get changed she goes into their locker and comes out with a plastic bag. “Maybe you already have one,” she said, “but in case you don’t, here’s one for whatever laundry you might need to put in there.” “Thank you,” I reply, and am seriously at a loss for words. She waves her hand again in the air, and as she starts getting her little guy changed, and I start putting on Lincoln’s clothes, I try to find the words to explain to her what happened. I feel like I have to.
“I have an ostomy bag,” I blurt out, “and it has this silly little plastic clip that keeps it closed. And it normally works just fine, but somehow today, it didn’t work fine,” I’m completely rambling, but I don’t know how else to explain all of this, “and my bathing suit got caught on it and so then the bag opened and everything inside spilled out onto the floor.”
She’s listening intently and looks up momentarily with a puzzled look on her face, “I really hate having to ask this”, she says, “but can you tell me what an ostomy bag is? I’ve heard the word before. I actually think my grandfather had one, but he passed away when I was thirteen. I really don’t know what it is.”
For some reason, I had the impression that this stranger had some sort of idea of what had happened inside that change room. I had a gut feeling like she was a nurse or something, and that’s what made her come to my aid because she had an understanding of what was going on . My heart is bursting with gratitude for this amazingly kind woman.
I have an ostomy ‘schpeel’ at this point of my life, a short and sweet description of having had colitis, going for surgery, what an ostomy is, and how it’s one of the greatest things to have ever happened to me. As I rattle it off to her, she listens carefully, all while dressing her kids, herself, and handing over a snack to all three kids. I feel like I have actually met Super Mom.
“I am so sorry that you’ve gone through all of that,” she says to me when I finish, “but wow, does it sound like you have the right outlook on life! I can’t say that I’d be that grounded if I were in your shoes.” I have a hard time believing that. My Angel In Shining Armour and I make our way out of the change room with our munchkins in tow and say goodbye at the door. Both of the one year olds manage to have meltdowns at the exact same time while we’re putting their boots and coats on , and we never get around to exchanging names or numbers. But as she was heading out the door I called out to her, “Thank you again. Words can’t even begin to express how grateful I am!”
“No worries,” she replies, “Seriously. Shit happens.” And the two of us laugh together over the whines and cries of the toddlers, as we go our separate ways. Her gift of kindness and good will, will forever be engrained in my memory. The shame and embarrassment I felt from the attitude and actions of the other mom in the change room will be hard to forget, but the pain is definitely much easier to swallow when I reflect on the amazing woman who went out of her way to help me out.
Angie is the 20/40-committee leader for both UOAC and Calgary Ostomy Society and the webmaster for COS and NCACOA.
“Shhh…It Happens” first appeared in the Winter 2013 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.